Category Archives: Uncategorized

And the Beat Goes on…

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7 Years Post-Transplant!

Do you believe it?!  Last month was my 7-year stem cell birthday and still no progression!

So much has happened this past year. I was able to travel to New York City two times (see pics below), become the host of a podcast, and was recently asked to be the host of a virtual summit for The MS Gym, but I’m just as excited to share with you this YouTube video, where I talk with my HSCT comrades, Jeff and Tammy, who were treated in Moscow when I was in 2013. We each had different types of MS, different outcomes, and varying recovery trajectories. We share where we’re at now, what our current EDSS is compared to pre-transplant, our thoughts on re-vaccination and lots other insider info. It’s an honest look at what you can expect during treatment, and the often bumpy road that follows post-transplant.

So, whether you’re researching HSCT, scheduled for HSCT or post-HSCT, here’s your chance to hear what recovery looks like at 7 years out!

I Love New York!

From conferences to book launches, South Street Seaport to Midtown, this city I love is like an obstacle course if you have mobility challenges. Slow and easy wins the race was my mantra and by slowing down you notice all the little nuances this city has always served up but were always too busy to savor.

There are gifts in every setback. You can either let your MS be the ruining of you or the reinvention of you. I’ve chosen the latter…trekking poles included.

I’ll be taking this summer off to chill and work on some exciting new ventures. In the meantime, you can find me on Instagram or my post-transplant website www.brookeslick.com.

Thanks for stopping by!

Love and peace.

Brooke

Photo credits: Amy Hedges Photography

Let’s Give ’em Something to Talk About

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Let’s Give ’em Something to Talk About

Well guys, it’s coming up on my 6th stem cell transplant anniversary and I’m STILL talking about HSCT whenever I get the chance.

I’ve had more than a few opportunities over the years, and most recently, I was the first Moscow veteran to be interviewed on the HSCT Warriors Podcast. It was an honor to share my Moscow experience with host, “zen” Jen, who had her transplant done in Chicago.

Whether you’re researching HSCT in Moscow, a veteran or currently receiving treatment, I encourage you to give it a listen.  There are lots of little details about the treatment, the staff, recovery, Dr. Fedorenko, and two of my “superpowers” that were invaluable during treatment and recovery. Click on the image below for direct access.

While I’ve got you here, keep an eye out for an upcoming announcement about an incredible opportunity I’ve been given to continue advocating for MSrs on a much larger scale, and directly to my target market.  It’s an unprecedented chance to share updates on the book I’m working on, speaking gigs, collaborations, and the patented mobility device I created.

DON’T MISS OUT ON ALL THE GOODNESS COMING IN 2019

IF YOU HAVEN’T ALREADY SIGNED UP FOR EMAIL UPDATES FROM ME, HERE’S YOUR CHANCE

CLICK THE LOGO BELOW!

 

I’m Not Afraid to Take a Stand. Everybody, Come Take My Hand…

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Hello, everyone! I can’t believe it’s September already!

It seems like yesterday I was tearing up the busy streets of New York City, soaking up the energy that oozes from every concrete pore of the city I love so much, and gaining a newfound confidence in my future’s path.

So much has happened since April and I’m dying to share with you what’s been going on in my world of progression-free MS.

You see, here in the northeastern U.S., September typically means crates full of pumpkins, rows of multi-colored mums and occasional cool breezes that sneak their way into the lingering summer heat. They remind us to savor our last chances to dine al fresco or open all the windows in the house before we’re sealed in tightly as the world freezes over for five months.

This year, September means something completely different and exciting for me. As I had mentioned in an earlier post this year, I was considering writing a book. Not long after writing that post, I realized that instead of waiting until I thought it was the perfect time to write the book, I would plunge ahead with it now, as there really is no perfect time for, well, anything. If that were true, no one would ever get married or have children! It’s all about perspective and creating your own perfect timing. I went all in and spent the entire summer carving out the contents of this book from my last 18 years of personal experiences, observations, testimonials, encounters with and counseling of women like me who have been living with disability.

How does September play a role in this story? Well, I have a book proposal deadline of September 30th! In addition to writing the book, I’ve had to create a website under my own name, www.brookeslick.com, hire illustrative designers for logos, book content and cover design, a photographer, and an editor. There’s a bio to be written, a market analysis, a competitive analysis and more that all need to be completed and submitted by 09/30/2018! Whew! I’m out of breath!

Here’s where I need your help! In the eyes of a publisher, one of the most valued assets an author can possess is a healthy-sized “platform”. Platform = how many followers I have that are part of my target market audience and, just as important, how many email addresses I’ve obtained from those followers.

I’ve been so lucky with this blog over the last 5+ years with visitors to the site from 90+ countries and many loyal followers who receive emails any time I make a blog entry. Visitors from the US, Canada, Australia, the UK, Germany and Norway have been consistent front-runners since day one!  The only catch is, I originally created this accidental platform with the intent to share my HSCT experience for anyone, anywhere in the world who was seeking HSCT in Moscow. At the time, I had no intention of gathering email addresses from visitors. It was one of the very first HSCT blogs at a time when there were only a handful of free online resources/bloggers. I wanted to help as many people as possible…no strings attached. This site has and always will remain that way.

What I need now is for anyone who reads this post, “follower” or not, to go to my new website, www.brookeslick.com, and sign up for updates on my book, including the title release, sneak peeks, future release dates, and fun behind the scenes antics. By doing so, you will be helping to build my e-mail list which makes me and my book, which will be tackling vanity, self-worth and disability in a woman’s world, an even more desirable prospect to a publisher.

The fact that you’ve stuck around all these years humbles me beyond words. But, I’m not too humble to ask PLEASE, PLEASE, PLEASE go to my new website and sign up for updates!

I can’t thank you all enough for your continued support and for taking the time to lend a hand with this big adventure.

It’s evident by this post that dreams can come true after transplant. I wish you all the best before, during and after your HSCT journey. I hope you’re finding this blog at just the right time for you to make a move to free yourself.

Peace, love and thank you.

Brooke

P.S.  Be on the lookout for an official Brooke Slick Facebook & Instagram Page coming soon.

I Want You to Know…

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I Want You to Know…

It was an honor and a privilege to have been selected to co-host a live webinar with Dr. Denis Fedorenko, of the A.A. Maximov Department of Hematology and Cellular Therapy at Pirogov Medical Surgical Center in Moscow. At midnight, Moscow time (yes, that’s how he rolls), on Friday, June 22, 2018, Dr. Fedorenko answered many of the most-commonly-asked questions about HSCT (hematopoietic stem cell transplantation), how it works and why the non-myeloablative protocol he utilizes is considered the most effective treatment available to halt various autoimmune diseases. Below is a sampling of topics that were discussed, which included valuable information and advice for those considering HSCT as well as for veterans recovering from HSCT.

  • What is HSCT and how does it function to eradicate disease progression?
  • Who is the best candidate for HSCT?
  • What is the inclusion and exclusion criteria for acceptance to Pirogov?
  • What are the pros and cons of non-myeloablative vs. myeloablative protocol?
  • Relapse Rates
  • Pregnancy after transplantation
  • Rituximab vs. ATG in protocol
  • How to know if you may be a non-responder following transplant
  • The recovery rollercoaster
  • Safety precautions after transplant
  • How a positive attitude contributes to a more cohesive experience during and after transplant

If you ever wanted to know more about HSCT, and to hear the information from the voice of a highly-regarded HSCT legend, click on the image below and choose “Events” from the menu. I hope you enjoy this rare one-on-one opportunity.

All my best.

Brooke

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Click this Image to View Webinar

No More Monsters, I Can Breathe Again – 5 Year Anniversary!

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No More Monsters, I Can Breathe Again – 5 Year Anniversary!

What the…! Yes, really!

It’s finally here! My 5-year post-transplant mark has arrived!! My heart feels like it was yesterday, yet the MS part of me feels like it was decades ago. The taste of creamed corn lingering in my mouth, and Dr. Fedorenko saying “Just breathe…” as my once frozen stem cells were being reintroduced to my body will likely never vacate my memory banks. Seriously, how many MS patients around the world will get to experience this treatment that has saved so many from certain functional disability?! Damn straight, I’ll be remembering it! However, the MS part of my psyche that used to wake up to dread and uncertainty each morning has been gone since I walked out the doors of the stately facility that held me in its healing arms for a month in the spring of 2013.

As fate would have it, I’ve had the privilege of following and offering advice to a drove of patients who have followed since my stay, and, to this day, even though the facility’s program has grown to accommodate the newfound demand, the protocol, the staff, and the experience itself, have remained true to its caring, individualized, safety-minded roots. Ask any Moscow veteran and they will tell you that Dr. Fedorenko always made them feel like they were his only patient. There’s no better gift a doctor can give to his patient during such a tenuous time. The man was born to heal.

Fortunately, 1000s more MSrs have received HSCT in facilities throughout the world since I roamed the halls of Pirogov. I would love to be able to say that more patients have received the treatment because it is now a mainstream option, but that would not be the case. The largest means of public exposure regarding HSCT relies largely upon word of mouth distribution of information from veterans via blogs and social media. Then, of course, there was the 60 Minutes Australia piece that set the MS/HSCT world on fire and caused a ripple effect that continues today. Here in the US, Dr. Burt’s Chicago-based program is making strides, with some patients even having their HSCT covered by medical insurance, but it is still and may never be a first line of defense option in the US.

How I’m Doing Now…

Is my EDSS the same?

My EDSS (Expanded Disability Status Scale), which judges mobility only, is slightly lower (lower is better) than it was before transplant but can and does vary greatly dependant upon how long I’ve been walking, what type of terrain I’m walking on, and whether or not I’m tired or weak from illness. There is no magic switch that is flipped after you leave the hospital. You MUST put in the time for physical therapy! It likely took years for your body to transform into its current state. It’s important to note that physical therapy/exercise could very well be part of your routine for your lifetime. Discontinuing being active and moving your body after you’ve met your initial physical therapy goals, may not be an option if you are going to continue to remain as mobile as you can for as long as you can. And, please don’t tell me you don’t have the time or money. Have you heard of The MS Gym with over 14,000 members? It’s hands down the best free source of MS-specific rehabilitative exercise rooted in neuroplasticity available on the internet. Even 15 minutes a day is better than no minutes a day. Do you want to recover or not?!

Did my symptoms continue to improve?

My symptomatic improvements started to level out at about 3 years. My MS hug, in particular, remains dormant unless I’m fighting an infection of some type, but I used to have it 24/7 for about 4 years, so I’ll take it! My balance is still not 100%, and relies mainly upon the status of my foot drop on any given day, but is much better than before transplant. The foot brace (AFO) that I shed 4 years ago (1 year AFTER transplant) has remained in a storage bin since that time. The dexterity in my right hand is still less than stellar as well as is the strength in that hand and arm. Remember, HSCT doesn’t always “fix” everything. I’m totally cool with that. Are you?

Have I had any setbacks?

Yes. I have had 3 setbacks. My first was 2 years after transplant, and with the guidance of my neurologist and hematologist, I began my revaccination process. I had a tetanus/Diptheria injection and two days later any improvement in my foot drop had waned and I never did regain all of the prior improvement. It’s still better than before transplant, but after not having to use my trekking pole at all for months, it was definitely a blow to my ego. What would people who thought I was “all fixed” think?

My second was shingles, which I’ve had 4 times over the last 5 years. One of those bouts was on my left knee which is my good leg. The nerve damage from that outbreak traveled from my knee to my foot and has caused numbness in both of those areas. Given my history with shingles, my hematologist has recommended that I continue taking acyclovir twice a day, indefinitely. No breakouts since then.

My last and more dramatic setback really had nothing to do with HSCT, but the peripheral effect has definitely hindered my mobility. For two years in a row (2016 & 2017), I suffered from trigeminal neuralgia attacks (yes, I had glimmers of this bad boy before transplant). The necessity to take Gabapentin for this ailment greatly affected my balance and this last bout left me unable to move (literally) for about 3 months. Thank God, 3 months ago, I was finally able to have surgery for what I would consider the most painful experience of my life and I have not had any pain since. BUT, my core and overall strength I lost during that time has me starting all over from scratch with my walking and balance. Pain in my ass? Yes. Will I get over it? Hell, yes!

Have I had Triumphs?

Absolutely! Let’s start with 5 solid years of MRI scans reporting ZERO progression. Yep. That says “triumphant” to me! It’s like my scans have been frozen in time, thank you very much!

The simple act of being able to plan and dream for the future with certainty and without the chains of a progressive disease weighing you down like an anchor on your soul is the greatest triumph of all. It encompasses a large part of what we all hope for when we undergo this out-of-the-box treatment.

My biggest triumph to date took place two weeks ago, when I lived out one of my pre-transplant dreams. You see, I lived in New York City for almost ten years, but had not been back in over 27 years. If you’ve never been there before, it’s what I would consider a “walking” city. A walking city, that in the eyes of somebody with mobility deficits, looks like an obstacle course that a Marine would traverse at boot camp. Transitioning from surface to surface and sometimes within just feet of each other would have been impossible for me over the last 10 years. But, when Dr. Fedorenko’s assistant, Anastasia (aka, the Angel of Pirogov), contacted me to let me know that she was coming to New York and would love to meet me in person, there was no way I was going to say no. I knew this would be a huge test of what I could or could not accomplish independently. I was hesitantly excited. I didn’t want to slow anybody down. I didn’t want to fall in front of thousands of people. I was no longer an able-bodied 27-year-old navigating at the speed of light. I was 53, had mobility issues, and I was going to have to watch my shit or the masses of tourists would trample me like a bull at Pamplona! That never happened, but what a visual. ha ha

The 4.5 hour drive into the city was without incident. Unknowingly, I found a parking garage with an elevator to the street level. Score one for the limpy chick! I had angels watching over me the entire trip and they came in all shapes and sizes. I felt like the entire city knew I was coming back, but I was going to need a little help. The hotel, The Redbury, was very attentive with my bags, had a ramp and minimal stairs. The doorman was quick to show me how to use the “handicap” door opener button. Room service was super fast and scrumptious. The location was convenient to uptown and downtown so it was perfect! The following day, thanks to the opportunity to have a day to myself, I woke early, grabbed my two trekking poles, the secret to my navigational success, and jumped (You know I can’t jump!) in a cab to Soho, my old stomping grounds. Cobblestone streets, I got you. Hopped another cab to Bryant Park, Washington Square Park, Chelsea Market and topped off the night with a trek through Grand Central Station and then to a rooftop lounge that had a steep chrome staircase that looked like they were straight out of an 80s disco. Check, check, check, check, check! I truly was “living the dream”. Not a single trip or fall the entire time! I think it’s important to mention that I couldn’t have made this trip on my own without a very handy piece of carryon luggage with backup bag from the Travelon company that allowed me to roll all of my items around with just one hand. The lower part of the bag seen in the pic below also fits under the typical airplane seat. I used the water bottle pocket to carry my umbrella. Handy, indeed!! With my newfound confidence, I’ve already decided, my next trip will be much longer. I hope you enjoy the pics of the trip below, including a highly-coveted elevator selfie with Anastasia! 😉

Words of Wisdom from an OG of HSCT…

  • There are no guarantees or means to predict the amount of symptomatic improvement you may or may not experience post-transplant. If halting the disease, alone, is not enough for you, you might want to look into something else.
  • PLEASE, PLEASE, PLEASE LIVE during your recovery! DO NOT sit around waiting for miracles to happen or for worsening of symptoms or new symptoms to arise. STOP LIVING IN FEAR! Your mindset has huge implications on the cohesiveness of your recovery. Don’t let comparison and impatience become your own worst enemy.
  • RECOVERY…Because this is my personal blog, I’m going to use a verbally heavier hand than I do as an admin of the Moscow HSCT Facebook group for this topic related to recovery, so, here goes…QUIT YOUR BITCHING! When you read a million times that your symptoms may get worse for the first 3 to 6 months before they start to improve, WE MEAN IT. When we say you may feel strange sensations that you’ve never felt before like tingling or a muscle twinge, it’s normal, WE MEAN IT. When you read that you may have hot flashes for a year or more, WE MEAN IT. When we encourage you to read the list of commonly known post-transplant symptoms, WE MEAN IT. There’s no need to stress because it’s NORMAL.

What’s Next for Me?

  • More traveling! Now that I know I have the tools to safely navigate even the roughest of terrain, I’m going to go grab the world by the tail. Next stop is Colorado in September.
  • More living my purpose. I’m convinced I was graced, not cursed with this disease. I’m turning this obstacle into an opportunity to help others. Last year, I received a patent on a mobility device I created that has completely changed the way I live around my home and look forward to being able to use one in public, to travel, and to get back to living a fully engaged, independent life and sharing it with the rest of the world. As you all know, disability has no borders, so I plan on taking it international. All I need is the right company, with the same vision as I have to make it happen. Basically, the premise that being disabled doesn’t have to mean weary and stodgy. You can still be hip, cool active and stylish, but just so happen to be disabled.
  • More writing. Yes. I’ve already started a couple of books in my head. Don’t laugh. That’s where the magic happens. Blogging was just my playground to test my ability to share.
  • More mindfulness. I recently embraced meditation and it’s been a game-changer for me. I haven’t been able to sit still for 53 years. Who knew?! Thanks, Gabby Bernstein, Rebecca Campbell, and all the other spirit junkies who make this a habit I don’t want to kick…namaste!
  • More stepping back. Since last fall I’ve been doing my best to step away from my admin duties on FB, and any news, unless it’s related to weather. Basically, stripping away all the static that life tempts us with that keeps us from living a richer, more peaceful life.
  • More dream catching. Thanks to HSCT, I’ve been gifted with a brand new set of dreams. Will it be a book? Will it be speaking? Will I be traveling the world representing the mobility product I’ve created? Maybe all of the above.

Ta ta for now…

All good things must come to an end, and that’s my cue to exit one of my favorite posts in 5 years. I can’t thank you all enough (from over 70 countries) who have followed me on this journey. It’s meant everything to me. I’ll leave you with some silly pics that my daughter took in preparation for this blog post and some wise words to my MS with help from Kesha.

To my MS…
“Cause you brought the flames and you put me through hell
I had to learn how to fight for myself
And we both know all the truth I could tell
I’ll just say this is “I wish you farewell”

Peace.

Brooke

No More Monsters I Can Breathe Again – Part 1

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No More Monsters I Can Breathe Again – Part 1

Hello, everyone!  Although my 5-year stem cell birthday isn’t until mid May and I won’t be posting a detailed update until then, I couldn’t wait to share some fantastic news. I had my yearly MRI last week and there was absolutely ZERO progression!!  That’s right.  5 years.  No progression.  I know many potential patients are looking for veterans who are 5+ years post-transplant whose disease remains halted, and now you have proof of yet another HSCT success.  I have tons more to share about what I’ve been up to the past two years and will be blogging about it in May. Until then, I hope you are all doing well and I look forward to checking in next month.  To be continued…

Peace and love.

Brooke

Hello from the Other Side…of Recovery

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Hello from the Other Side…of Recovery

 

HELLO,  EVERYONE!  I’M ALMOST 3 YEARS POST-TRANSPLANT AND DECIDED TO WRITE A LETTER TO MY NEWLY-TRANSPLANTED SELF.  PLEASE TAKE A MOMENT TO WATCH THE INTRODUCTORY VIDEO WITH A MESSAGE FROM ME, AND I HOPE YOU ENJOY READING MY “LETTER”.

**PLEASE NOTE THAT EVERYONE’S RECOVERY STORY IS DIFFERENT.  THIS IS MINE.

Letter to My Newly-Transplanted Self

HEY, BROOKE!  SO, YOU JUST CAME HOME FROM MOSCOW AND YOU’RE WONDERING HOW THIS IS ALL GOING TO SHAKE OUT OVER THE NEXT FEW YEARS.  WELL, I’VE DECIDED I’M GOING TO GIVE YOU A PEEK INTO THE FUTURE.  DON’T BE AFRAID.  I WANT YOU TO KNOW THAT YOUR NEMESIS, PATIENCE, IS ABOUT TO BECOME YOUR BEST FRIEND AND THAT YOUR PROMISE TO YOURSELF TO EXPECT AND BE GRATEFUL FOR NOTHING MORE THAN HALTING YOUR DISEASE WILL BE THE GREATEST GIFT YOU COULD HAVE GIVEN HERSELF.  HERE’S WHAT’S IN STORE FOR YOU IN RELATIVE CHRONOLOGICAL ORDER…

Drama

CRAZY THINGS ARE GOING TO HAPPEN TO YOUR BODY AS SOON AS YOU GET BACK TO THE U.S..  THE WEEK YOU GET HOME, YOU’LL GET A FEVER AND RASH FROM YOUR NECK TO YOUR WAIST.  YOUR PCP AND DR. FEDORENKO WILL NAIL DOWN THAT IT’S A REACTION TO THE LONG-TERM USE OF THE BACTRIM YOU HAD IN MOSCOW AND THE EXTRAS HE SENT YOU HOME WITH.  ONE DAY AFTER DISCONTINUING IT, YOUR FEVER AND RASH WILL BE GONE.

Honeymoon

NOW THAT YOU GOT THE DRAMA OUT OF THE WAY, YOU’RE EXHAUSTED, EXCITED, THANKFUL AND GLOWING IN ANTICIPATION OF YOUR HONEYMOON PHASE!  ENJOY IT!  YOURS IS ONLY GOING TO LAST ABOUT 3 MONTHS, WHEN YOUR SPASTICITY STARTS TO RETURN LITTLE BY LITTLE, BUT THIS TIME, YOU’LL TAKE THE TIME AND EFFORT TO MANAGE IT WITH STRETCHING EXERCISES THAT WILL BECOME PART OF YOUR DAILY ROUTINE…FOR LIFE.  NO SHORTCUTS!

HOPEFULLY, YOU DON’T MIND A LITTLE SNOW ON YOUR HONEYMOON, BECAUSE EVERY TIME YOU CHANGE YOUR CLOTHES, IT’S GOING TO LOOK LIKE A SNOW SQUALL FROM ALL THE DRY SKIN CAUSED BY THE CHEMO YOU JUST ENDURED.  IT’S ONLY GOING TO LAST FOR A COUPLE OF MONTHS, AND YOU’LL BE TOO DISTRACTED BY THE HOT FLASHES YOU ENDURE FOR THE NEXT YEAR TO CARE!  YOU’LL BE REMINDED THAT CHEMO IS TOXIC!  SO TOXIC THAT YOUR FINGER TIPS WILL PERIODICALLY CRACK AND BLEED.  I WISH I COULD TELL YOU THIS IS GOING TO GO AWAY EVENTUALLY, BUT, YOU’RE ALMOST 3 YEARS POST-TRANSPLANT NOW AND O’KEEFE’S WORKING HANDS HAND CREAM IS A NIGHTLY BEDTIME STAPLE.

No Pain, No Gain?  Physical Therapy

ALL MOSCOW HSCT VETERANS KNOW DR. FEDORENKO’S MANTRA IS GOOD FOOD, GOOD ATTITUDE AND PHYSICAL THERAPY.  FOR YOU, HE PRESCRIBED BEGINNING PHYSICAL THERAPY ONE MONTH AFTER YOU RETURN HOME.  I KNOW YOU CAN’T WAIT TO START.  YOU FEEL BETTER AND HAVE MORE ENERGY THAN YOU HAVE IN YEARS, THE REFLEXES IN YOUR FEET AND KNEES ARE REACTING NORMALLY, AND YOU ARE SO ANXIOUS TO BE ABLE TO SAY “LOOK WHAT I CAN DO!”…NOT SO FAST.

WHEN THEY ASSESS YOU ON YOUR FIRST DAY OF THERAPY, YOU’RE GOING TO BE SHOCKED AND HUMBLED THAT YOU CAN’T EVEN GET OUT OF A CHAIR WITHOUT USING BOTH YOUR HANDS TO PUSH OFF AND WHEN THEY GIVE YOU A GENTLE SHOVE ON THE SHOULDER, YOU WILL STUMBLE BACKWARD LIKE A FRAIL 95-YEAR-OLD.  DID YOU REALLY THINK YOU WERE BUILDING STRENGTH WHILE YOU WERE CONFINED TO A HOSPITAL ROOM FOR A MONTH AND WHILE YOU WERE LOCKED IN YOUR MS SUIT OF ARMOR FOR 7+ YEARS?  REALLY?

YOUR PHYSICAL THERAPIST IS GOING TO SET GOALS FOR YOU AND YOU’LL COMMIT TO INVESTING AT LEAST ONE YEAR TO MEET THEM.  YOU’RE GOING TO TELL YOURSELF “I BREEZED THROUGH HSCT, I’LL KNOCK THIS OUT OF THE PARK, TOO”, AND YOU DO, BUT YOU ARE GOING TO EXPERIENCE MORE PAIN, SORENESS AND HUMILIATION THAN YOU HAVE IN YOUR ENTIRE LIFE.

3 MONTHS POST-TRANSPLANT AND ONE MONTH AFTER YOUR BEGIN PT, YOU WILL BEGIN TO EXPERIENCE EXTREME JOINT PAIN.  KNEES, HIPS, LOWER BACK, YOU NAME IT. IT’S GOING TO FEEL LIKE SOMEONE POURED BATTERY ACID INTO YOUR JOINTS, AND ROLLING OVER IN BED WILL REQUIRE PULLING YOURSELF INTO A FETAL POSITION AND GENTLY POSITIONING YOURSELF.  YOU’RE GOING TO HAVE MOMENTS WHEN YOU WONDER IF YOU’LL EVER GET ANY RELIEF.  YOU WILL.  3 MONTHS LATER, ON THANKSGIVING MORNING, YOU WILL WAKE UP AND HAVE ZERO JOINT PAIN…ZERO!  YOU’LL ASK YOURSELF WHAT THE???!!, AND IT NEVER RETURNS.  IN THE COMING MONTHS/YEARS, MANY OTHER VETERANS WILL EXPERIENCE THIS SAME JOINT PAIN.

THERE WILL BE A LOT OF MUSCLE PAIN INVOLVED WITH PHCHAMPAGNE BLOGYSICAL THERAPY. REMEMBER WHEN YOU FIRST STARTED WALKING FUNNY AND YOUR FOOT, LEG AND HIPS STARTED TURNING OUT WHILE YOU WALKED TO KEEP YOU FROM FALLING?  DO YOU REMEMBER HOW PAINFUL THAT WAS?  WELL, NOW, YOU HAVE THE CHANCE TO HAVE IT ALL SHIFTED BACK INTO PLACE, BUT IT’S GOING TO MAKE YOUR PREVIOUS PAIN SEEM LIKE A WALK IN THE PARK. YOU’RE GOING TO BE PUSHED TO YOUR LIMIT, AND SOMETIMES, YOU’LL PUSH TOO HARD AND REGRESS.  GOOD ADVICE WILL COME FROM AN HSCT BUDDY, KEITH.  HE’S A CHIROPRACTOR FROM CANADA.  HE’LL SUGGEST THAT YOU CUT YOUR ONE HOUR PT SESSIONS TO 30 MINUTES.  AT FIRST, YOU’RE GOING TO FEEL LIKE THAT WOULD BE THE EASY WAY OUT, BUT, YOU’LL QUICKLY COME TO UNDERSTAND THAT MORE PAIN, DOESN’T ALWAYS MEAN MORE GAIN AND YOU WILL REACH ALL OF YOUR GOALS 5 MONTHS EARLIER THAN EXPECTED.  BOOM!

YOU’LL TAKE THE ROUTINES YOU LEARNED AT PT AND BEGIN DOING THEM AT HOME.  DOING THEM EVERY OTHER DAY WILL BE YOUR PLAN, BUT IT WILL BE 2 YEARS BEFORE YOU FIND THE PERFECT ALL OVER BODY WORKOUT.  IT WILL COME IN THE FORM OF A HULA HOOP.  YES, BROOKE.  I SAID A HULA HOOP.  STOP LAUGHING!

Let’s Keep This Short – Followup Chemo

3 MONTHS POST-TRANSPLANT, YOU’RE GOmitoxantrone

ING TO BEGIN ONE YEAR OF FOLLOW-UP CHEMO, ONE EVERY THREE MONTHS, JUST AS DR. FEDORENKO HAD PRESCRIBED BEFORE YOUR HSCT BEGAN.  THE GOOD NEWS IS, OVER THE NEXT 3 YEARS, ONLY A FEW MOSCOW PATIENTS WILL REQUIRE FOLLOWUP CHEMO.  YOURS IS GOING TO BE MITOXANTRONE, AKA THE “BLUE DEVIL”, DUE TO ITS TOXIC NATURE.  ONCE AGAIN, THE PLANETS ARE GOING TO ALIGN FOR YOU.  YOU’LL BE BLESSED WITH NO SICKNESS, A FANTASTIC INFUSION CREW AND TWO SUPER COOL HEMATOLOGISTS TO MONITOR YOUR PROGRESS.  DON’T GET ME WRONG, 2 DAYS AFTER EACH OF YOUR CHEMO INFUSIONS, YOU’RE GOING TO HIT A BRICK WALL.  EVERY OUNCE OF ENERGY OVER EVERY INCH OF YOUR BODY WILL BE SUCKED OUT OF YOU.  BLINKING WILL BE YOUR BIGGEST TASK OF THE DAY.  NO WORRIES.  WITHIN A WEEK, YOU’LL BE BACK IN THE SADDLE, TEARING IT UP AT PHYSICAL THERAPY.  SUCK IT, MS!

Fancy Shoes

no brace

SO, GET THIS. A COUPLE OF WEEKS AFTER YOU GET HOME, YOU’RE GOING TO REALIZE THAT YOU NO LONGER NEED THE TREKKING POLE YOU’VE RELIED ON FOR THE LAST 2 YEARS.  YOUR BRAIN AND YOUR BODY WILL NO LONGER CRAVE IT FOR BALANCE.  YOU’LL KEEP IT IN YOUR CAR, JUST IN CASE, BUT, IN THE FUTURE, YOU’LL ONLY NEED IT FOR LONG WALKS OR UNEVEN SURFACES.  BELIEVE IT OR NOT, A YEAR FROM NOW, YOU’RE GOING TO FLY SOLO, NAVIGATING THROUGH SOME VERY LONG AIRLINE TERMINALS TO DALLAS AND WON’T EVEN TAKE THE POLE.  YOU’LL GET TO MEET THE ORIGINAL NINJA, AMY PETERSON, AND A HANDFUL OF YOUR SOFA SISTERS IN THE FLESH, BUT, YOU’LL STILL BE WEARING YOUR FOOT BRACE, THE ONE THAT KEEPS YOU FROM WEARING ANY OF YOUR FANCY SHOES AND BOOTS.   A FEW WEEKS AFTER THAT TRIP, YOU’LL WAKE UP ONE MORNING AND DECIDE THAT YOU’VE HAD ENOUGH OF THAT FOOT BRACE. YOU’LL PUT ON YOUR SHOES WITHOUT IT AND THE NEXT TIME YOU SEE THE BRACE WILL BE A YEAR AND ½ LATER, WHEN YOU’LL FIND IT IN A STORAGE BIN, WHILE LOOKING FOR CHRISTMAS DECORATIONS,  AND YOU’LL BE THANKING GOD YOU CAN WEAR CUTE SHOES AGAIN.

Stop the Train…I Want Off – Revaccination

WHAT ABOUT THOSE REVACCINATIONS?!  IT’S GOING TO BE ALMOST TWO YEARS POST-TRANSPLANT WHEN YOU DECIDE YOU’RE GOING TO SUCK IT UP AND GET YOUR VACCINATION TITRES DONE.  THE RESULTS SAY THAT YOUR DTAP (TETANUS/DIPHTHERIA/PERTUSSIS) VACCINATION IS NO LONGER VALID.  YOU SPEAK TO YOUR HEMATOLOGIST AND NEUROLOGIST, AND DECIDE TO MOVE FORWARD WITH IT.  THERE IS ABSOLUTELY NO WAY YOU COULD PREDICT WHAT WOULD HAPPEN TO YOU THE MORNING AFTER YOU HAD YOUR VACCINATION.  NO WAY!

YOU’RE GOING TO WAKE UP, AND YOU’LL NOTICE HOW SORE YOUR ARM IS.  YOU WON’T BE WORRIED.  IT’S PAR FOR THE COURSE.   IT WON’T BE UNTIL YOU STAND UP WHILE GETTING OUT OF BED THAT YOU’RE GOING TO BE TRANSPORTED BACK TO YOUR PRE-TRANSPLANT BODY.  THAT’S RIGHT!  YOU WILL BE CRAZY OFF BALANCE AND YOUR RIGHT FOOT WILL DROP SO MUCH THAT YOU’LL HEAR IT MAKING A SWISHING NOISE AS IT DRAGS ACROSS THE FLOOR WITH EACH STEP.  AS YOU ATTEMPT TO WALK DOWN THE HALLWAY, YOU WILL FIND YOURSELF GRABBING ON TO THE WALLS AND THEN SEARCHING FOR A PIECE OF FURNITURE TO NAVIGATE THE ROOM.   YOU’RE GOING TO FEEL LIKE THIS FOR A COUPLE OF WEEKS AND YOUR FOOT DROP WON’T BEGIN TO ALLEVIATE FOR SEVERAL MONTHS.  ALMOST A YEAR AFTER THIS VACCINATION, YOUR FOOT WILL STILL NOT BE AS STRONG AS IT WAS BEFORE THE VACCINATION, BUT IT WILL BE BETTER THAN IT WAS PRE-TRANSPLANT. THE ONE UPSIDE TO THIS INCIDENT, IS THAT IT WILL REMIND YOU JUST HOW BAD YOUR CONDITION USED TO BE COMPARED TO AFTER TRANSPLANT.  COUNT YOUR BLESSINGS!

You Say You Want a Revolution…The Russia Facebook Forum

SOON AFTER YOU RETURN FROM MOSCOW, YOUR MOSCOW COMRADE FROM HAWAII, JEFF, WITH HELP OF THE 2ND OF THE 3 MSKETEERS, TAMMY, WILL CREATE A FACEBOOK GROUP SPECIFICALLY FOR PATIENTS SEEKING HSCT IN MOSCOW.  THEY WILL ASK YOU IF YOU WANT TO BE AN ADMIN AND YOU, OF COURSE, ACCEPT.  IT WILL BE SLOW GOING IN THE BEGINNING AND 9 MONTHS IN YOU’LL ONLY HAVE 100 MEMBERS, BUT, 3 MONTHS LATER, AN AUSTRALIAN WOMAN, KRISTY CRUISE, THE ONE YOU MET IN MOSCOW, DELIVERED TO THE HOSPITAL AND WHO GOT YOU HOOKED ON TIM TAMS, WILL BECOME A ROCK STAR IN THE HSCT COMMUNITY AND START A WORLDWIDE HSCT REVOLUTION WHEN HER STORY IS AIRED ON 60 MINUTES-AUSTRALIA, AFTER THEY ACCOMPANY HER TO MOSCOW FOR HER TREATMENT.  HER STORY WILL OPEN THE FLOODGATES TO HSCT IN MOSCOW AND AROUND THE WORLD.  NEW FACILITIES WILL OPEN.  MORE FORUMS WILL BE CREATED, AND IN TWO Srussia forumHORT YEARS, THE RUSSIA FORUM’S MEMBERSHIP WILL SOAR TO OVER 2,000 MEMBERS FROM ALL OVER THE WORLD.  YOU AND YOUR COMRADES WILL DO EVERYTHING YOU CAN TO MAKE IT AN ORGANIZED, INFORMATIVE SANCTUARY FOR THOSE SEEKING HSCT IN MOSCOW.  YOU WON’T THINK SO IN THE BEGINNING, BUT, EVENTUALLY, YOU’LL HAVE TO WALK AWAY.  YOU WILL BEGIN TO SLOWLY TURN OFF NOTIFICATIONS TO ALL FORUMS EXCEPT RUSSIA.  YES, THERE WILL BE MANY. THE STAMPEDE FOR HSCT, WILL BRING OUT THE BEST AND THE WORST IN PEOPLE.  THE DRAMA THAT YOU WITNESS WILL WEAR YOU AND YOUR PATIENCE DOWN.  LIFE AND A BUSINESS VENTURE WILL FILL YOUR DAYS AND YOU WILL ABLE TO GET BACK TO LIVING, JUST AS YOU HAD HOPED PRE-TRANSPLANT. THAT’S WHY YOU DID THIS. REMEMBER?  TO GET YOUR LIFE AND YOUR FUTURE BACK.  THERE WILL BE OTHER ABLE VETERANS IN THE WINGS WHO COULD MANAGE THE RUSSIA FORUM, BUT, EVEN AT ALMOST 3 YEARS OUT, YOU’LL HAVE A TOUGH TIME FINDING THE PERFECT FIT AND WILL STRUGGLE WITH LETTING GO. BUT YOU WILL…WHEN IT FEELS RIGHT.

Thank You for Being a Friend

DURING YOUR TIME IN MOSCOW, THAT LITTLE GROUP OF SOFA SISTERS (SISTERHOOD OF THE FEDORENKO ALLIANCE) THAT LISA STALLINGS MALLOY PUT TOGETHER, WILL GROW TO OVER 25 MEMBERS FROM ALL OVER THE PLANET.  EVEN THOUGH YOU’LL ALWAYS HAVE A UNIQUE BOND, ALMOST ALL OF THEM WILL GO BACK TO THEIR RESPECTIVE LIVES, AND COUNTRIES, BUT,IMG_20140612_103418638 THERE ARE A FEW WITH WHOM YOU’LL BECOME VERY CLOBLOG PIC6SE.  LISA, TAMMY, KRISTY, VICKI, AND TONI (WHO’S A NON-SOFA WHO HAD HER HSCT IN GERMANY) ALONG WITH A HANDFUL OF OTHERS…THEY’RE LIKE THE SISTERS YOU’VE NEVER HAD.  HSCT THREW YOU IN EACH OTHER’S PATH, BUT THE SIMILAR SENSE OF HUMOR, QUICK WIT, STRENGTH AND LOYALTY THAT YOU ALL SHARE HAVE CEMENTED LIFELONG FRIENDSHIPS.  YOU’LL ALWAYS BE ONE PRIVATE MESSAGE AWAY FROM A HUGE BELLY LAUGH, OR A SHOULDER TO CRY ON.  YOU’D DO ANYTHING FOR EACH OTHER AND WILL STAND IN EACH OTHER’S DEFENSE, UNCONDITIONALLY.  PRICELESS.

Did That Just Happen?

SPEAKING OF FRIENDS…FOR YEARS, YOU’VE BEEN MAKING EXCUSES FOR NOT BEING ABLE TO GO TO SOCIAL FUNCTIONS.  YOU DIDN’T WANT TO PUT YOUR LIMPY SELF ON DISPLAY.  HELL, YOU COULDN’T EVEN STAND TO SEE YOUR REFLECTION AS YOU WALKED BY A STOREFRONT.  THAT COULDN’T BE YOU, COULD IT?  THAT’S GOING TO CHANGE NOW, AND AFTER ALL THOSE YEARS OF ISOLATION, YOU’RE GOING TO JUMP (NOT LITERALLY) AT THE CHANCE TO GO ON A GIRLS WEEKEND TO DEEP CREEK, MD.  YES, YOU’LL HAVE TO USE YOUR TREKKING POLE FOR UNEVEN SURFACES, BLAH, BLAH, BLAH, BUT WHO GIVES A DAMN!  YOU WERE ABLE TO DECORATE ALL THREE STORIES OF THE RENTAL HOUSE BEFORE THE GUESTS GOT THERE, AND, THERE’S NO BLACK CLOUD OF MS PROGRESSION FOLLOWING YOU EVERY DAY.

THE BEST PART OF THIS TRIP WILL BE WHAT HAPPENS WHEN YOU RETURN HOME.  YOU’LL BE PUTTING YOUR LUGGAGE AWAY AND MAKE A DISCOVERY THAT CAN CHANGE YOUR LIFE AND MILLIONS OF OTHERS, OLD AND YOUNG, WHO HAVE MOBILITY/WALKING DEFICITS.  WHILE TAKING YOUR SUITCASE FROM ONE END OF THE HOUSE TO THE OTHER, YOU HAVE AN AH-HAH MOMENT AND ASK YOURSELF “DID THAT JUST HAPPEN?”.  YOU’RE GOING TO SPEND THE NEXT YEAR WORKING WITH A DESIGN TEAM AND BUILDING ON THE CONCEPT, WHILE ATTEMPTING TO MAKE INROADS WITH POTENTIAL MANUFACTURERS. YOUR HOMEMADE VERSION OF THIS MOBILITY DEVICE WILL CHANGE THE WAY YOU LIVE WITHIN YOUR HOME AND WHEN IT FINALLY HITS THE MARKET, WILL CHANGE YOUR LIFE OUTSIDE THE HOME AS WELL.  TRADITIONAL MOBILITY BARRIERS WILL BE BREACHED, AND YOU WILL EXPERIENCE FREEDOM YOU NEVER THOUGHT WAS WITHIN YOUR REACH.  YOU ARE DETERMINED, AND SO AM I!  GET READY, BECAUSE YOU’RE GOING TO MAKE SOME BOLD MOVES TO MAKE IT HAPPEN.

Shit on a Shingle(s)

DON’T FORGET TO TAKE YOUR ACYCLOVIR!  DURING YOUR RECOVERY, YOU’RE GOING TO HEAR OF OTHER VETERANS WHO GET SHINGLES.  THE SHINGLES VIRUS CAN APPEAR IN ANYONE WHO HAS HAD CHICKENPOX, THEN, IT CAN LIE DORMANT IN YOUR BODY FOR DECADES.   IF THE VIRUS IS REACTIVATED LATER IN LIFE, WHICH IS COMMON IN PEOPLE OVER 60 OR PEOPLE WITH A COMPROMISED IMMUNE SYSTEM (YOU), IT PRESENTS IN THE FORM OF A PAINFUL, BLISTERED RASH.  YOURS WILL APPEAR IN JULY, 2015, ON YOUR LOWER BACK, WHICH IS ALSO A LITTLE OVER ONE YEAR POST-FOLLOW-UP CHEMO.  YOU WILL CONTAIN IT TO A 2 X 2 INCH AREA BY DOUBLING YOUR DOSE OF ACYCLOVIR UNTIL IT DISSIPATES…ABOUT TWO WEEKS.  DURING THE NEXT 5 MONTHS, YOU’LL GET IT ON YOUR KNEE TWO TIMES AND YOUR FOOT ONCE.  IT WON’T SURFACE ABOVE THE SKIN THE LAST 3 TIMES BECAUSE YOU WILL INSTANTLY RECOGNIZE THE TINGLING UNDERNEATH THE SKIN’S SURFACE THAT ACCOMPANIES SHINGLES.  YOU’LL ATTRIBUTE THE OCCURRENCES TO STRESS COUPLED WITH AN IMMUNE SYSTEM THAT’S CONTINUING TO BUILD.   LESSEN LEARNED.

Paying it Forward

IN ADDITION TO YOUR ONLINE WORK, YOU’LL HAVE AND TAKE THE OPPORTUNITY TO SPREAD THE WORD ABOUT HSCT IN NEWSPAPER ARTICLES, TELEVISION SPOTS AND SPEAKING ENGAGEMENTS.  YOU’LL DONATE ANY LEFTOVER FUNDS FROM YOUR FUNDRAISING EFFORTS BACK TO THE COMMUNITIES WHO RALLIED TO SEND YOU TO MOSCOW.  WHETHER IT’S A DONATION MADE TO AN INDIVIDUAL WHO WAS PARALYZED IN A CAR ACCIDENT, PAYING THE ELECTRIC BILL FOR A CANCER PATIENT IN NEED, OR BUYING A PAIR OF KINDLES FOR A YOUNG PATIENT AND HIS BROTHER AS THEY TRAVEL 2 HOURS EACH WAY FOR HIS IV INFUSIONS, THOSE FUNDS WILL FIND A PLACE WORTHY OF RECIPROCATING THE GENEROSITY YOU EXPERIENCED LEADING UP TO YOUR TRANSPLANT.HERALD2

The Big Reveal

YOU KNOW HOW YOU’D GIVE ANYTHING TO PEER INTO THE FUTURE TO SEE WHERE YOU’RE AT PHYSICALLY/MENTALLY AFTER HSCT. WILL YOUR LIMP BE GONE?  WILL YOUR MRIs HAVE SHOWN ANY PROGRESSION?  WILL YOU STILL USE A TREKKING POLE?  WILL YOUR BALANCE STILL SUCK?  THE BEST ADVICE I CAN GIVE YOU OR ANY NEWLY-TRANSPLANTED PATIENT IS TO IGNORE THE RECOVERY STATISTICS!!  YOU KNOW, THE ONES THAT SAY YOU WILL SEE MOST OF YOUR RECOVERY WITHIN 2 YEARS OR 3 TO 5 YEARS.  YOUR RECOVERY WILL BE AS UNIQUE AS YOUR DISEASE HISTORY AND YOUR HSCT EXPERIENCE.  STOP LOOKING AT THE RECOVERY TIMECLOCK, THE GRAPHS, THE CHARTS AND THE SCIENTIFIC BABBLE.  SOME OF THE BEST RECOVERIES I’VE SEEN ARE FROM PEOPLE WHO WALKED AWAY FROM THE COMPUTER AND THE FORUMS, AND GOT BACK TO LIVING WITHOUT LOOKING FOR REASSURANCE FROM OUTSIDE SOURCES.  PEOPLE NEED TO STOP COMPARING BECAUSE THERE ARE NO APPLES-TO-APPLES COMPARISONS WHEN IT COMES TO AUTOIMMUNE DISEASES AND YOU ARE NOT A NUMBER!

FOR YOU, THERE’S GOOD NEWS AND BAD NEWS, IF YOU EVEN WANT TO CALL IT BAD NEWS.  BAD NEWS WOULD BE THAT YOUR MRIs HAVE SHOWN THAT YOUR MS HAD PROGRESSED, OR YOUR SYMPTOMS HAVE GOTTEN WORSE THAN THEY WERE PRE-TRANSPLANT.  NONE OF THAT HAS HAPPENED.

  • YOU ARE PROGRESSION-FREE AND YOUR SYMPTOMS ARE THE SAME OR BETTER THAN THEY WERE BEFORE HSCT.
  • YES, YOU STILL LIMP, BUT, IT’S NOT AS PRONOUNCED AS IT WAS BEFORE AND YOU DON’T USE YOUR HIP TO LIFT YOUR FOOT.  YOU USE YOUR LEG.  YOUR CONTINUED FOOT DROP WILL ATTRIBUTE TO YOUR LIMP, BUT IT WILL UNPREDICTABLY COME AND GO.  SUCK IT UP.  YOU’RE WALKING, AREN’T YOU?
  • NO, YOU DON’T USE THE TREKKING POLE LIKE YOU USED TO…ONLY IF YOU ARE WALKING LONG DISTANCES OR ON UNEVEN SURFACES.
  • YOUR BALANCE IS NOT 100%, BUT, MUCH BETTER THAN PRE-TRANSPLANT.  THOSE CORE STRENGTHENING EXERCISES YOU’VE BEEN DOING AT HULA HOOP CLASS ARE GOING TO PAY OFF. YES, I SAID HULA HOOP!
  • THE DEXTERITY IN YOUR RIGHT HAND IS STILL HUGELY LACKING.  YOU WON’T BE LEARNING TO PLAY PIANO ANY TIME SOON OR TYPING 90 wpm LIKE YOU USED TO.
  •  MOST IMPORTANTLY, ALL 3 OF YOUR POST-TRANSPLANT MRIs ARE PROGRESSION-FREE.

A TYPICAL DAY FOR YOU IN FEBRUARY 2016 IS WAKING UP TO PRIVATE MESSAGES FROM INDIVIDUALS IN ENGLAND, SOUTH AFRICA, CANADA, MEXICO, EGYPT, ETC., SEEKING ADVICE REGARDING HSCT.  YOU ARE THEIR AMY PETERSON.  BE HONORED AND HUMBLED.

THIS IS THE YEAR DR. FEDORENKO SAID YOU WOULD HAVE BEEN IN A WHEELCHAIR WITHOUT HSCT.  YOU’LL BE THRILLED TO KNOW, YOU’RE STILL WALKING TALL AND YOUR FUTURE IS FULL OF ENDLESS POSSIBILITIES.

RAISE A GLASS, GIRL. YOU HAVE A LOT TO CELEBRATE! MAYBE I’LL SEE YOU AROUND SOMETIME.

CHMPAGNE

 

RESOURCES:

RUSSIA HSCT FOR MS & AUTOIMMUNE DISEASES FACEBOOK GROUP https://www.facebook.com/groups/404629779644453/

 

The Best is Yet to Come…

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The Best is Yet to Come…

Happy New Year!!

It’s been a little over 1.5 years since my stem cell transplant and about four months since my last blog update, so, I thought it was time to pop in with a status update from one of the earlier groups of international patients to have been treated in Moscow.   I’m happy to say that there are now 100s of patients currently scheduled to receive HSCT in Moscow.  In large part, the increase in numbers can be attributed to a 60 Minutes story that aired in March, 2014, in Australia, as well as the many veterans since who have blogged their HSCT experiences to the world.  If you think that it would be difficult for one person to make a difference, imagine my surprise when I received my 2014 blog stats from WordPress.  The graphic below indicates that in 2014 my blog was viewed by people from 97 different countries.  The U.S. was #1 on the list with Australia and Norway following the lead.

blog stats map 2014

 

My 2014 Checklist – In Pictures

Below is a pictorial of tasks that I was able to accomplish during 2014, many of which I would not have been able to complete pre-transplant, or, if I could have, it would not have been without a struggle.

My Recovery Status

–  Still walking without a trekking pole 98% of the time.  Only required for rugged terrain or longer walks.

–  Still walking without a foot brace since July, 2014.  I do not foresee having to wear one again…ever.

–  By the grace of God, I have never suffered from MS-related cognitive issues.  My cerebral clarity remains untouched!!

– I do retain a degree of spasticity in my right arm, hand, fingers and foot.  See pic of right-handed spasticity below. My right hand no longer naturally extends.

hand spasticity

 

–  I still retain lack of sensation in my fingers (one thumb still intact), toes, right ear and portions of my midriff.

–  Intermittently, I will experience the MS Hug (rib cage spasticity).  I may have it for an entire week and, then, not for two months.  I may have it for a day, then, not for a week.  It’s important not to wear a tight bra or clingy shirt, as it can trigger my Hug.

–  I continue to experience a degree of imbalance that also varies, however, nothing as bad as it was pre-transplant.  I attribute a large part of my ability to walk without assistance to the improvement in balance.

–  I do continue to suffer from coldness in my right arm/hand/fingers.  It is not a 24/7 situation, but, once it gets cold, it takes hours to get warm again.

– I no longer have shooting electrical shocks running through my eyes.

– My most nagging remaining symptom is foot drop, which has decreased significantly, but worsens as they day goes on or the longer I walk.  I do my best to rest in between walking to reserve my foot strength and function.

– My three MRIs that I have had since I returned from Moscow have all been completely stable.  No MS progression (Thank you, Dr. Fedorenko).

My Outlook

My outlook and attitude will always remain positive.  That’s just my style!  On average, an HSCT patient will realize the majority of their improvements within the first 2 years following transplant, however, improvement has also been evidenced at 3-5 years.  My case was thrown a bit of a twist when it was recommended (immediately prior to beginning my HSCT) that, based on my history of failing to respond to every MS drug/treatment that I tried (Betaseron, Copaxone, Gilenya, Tysabri, Solumedrol, Ampyra), I have one year of followup chemo after my transplant.  Given that, I’m kind of the “odd man out” in that I have no other Moscow HSCT patients, nor patients from other HSCT facilities who have been pre-emptively prescribed followup chemo.

So, what’s a girl to do?  I’ll tell you.  Recovery is hard work.  I plan to continue stretching and strengthening every single day and will most likely have to do that for the rest of my life.  Fair enough.  I will continue to move…no excuses.  I will accept whatever neurologic shortcomings I have been dealt, knowing the symptoms that remain will be all I will ever have (no more guessing what MS will take next…party over, MS!).  I will continue to update via this blog as I progress with my recovery and life.  I will gently step away from the HSCT spotlight to relentlessly pursue my dreams in whatever form they may come. I will remain forever grateful for the gift of HSCT.

As always, peace and love from the Pennsylvania countryside.

Brooke

Shout It! Shout It! Shout It Out Loud!!

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Shout It! Shout It!  Shout It Out Loud!!

This is a very quick update to let you all know that I’ve just received the most exciting news!!  My HSCT for MS story has been included in a newly published book on Amazon.com along with the stories of 20 other patients who received their healthcare abroad.  It’s titled…

Healthcare Elsewhere – Inspiring Medical Tourism Success Stories.

Right now, they are running a promotion on the Kindle version for 99 Cents! (I’m Chapter 5).    Please click on the image below to get your copy of the book for your phone or tablet today. Even if you don’t have a Kindle, there is a free Kindle app that works on EVERY system, mobile to desktop, Mac to PC.   Woo hoo!!

 

Disclaimer…I received zero compensation for my contribution to this book.

Celebrate Good Times…Come On!

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dallas interview 2

The hotel manager graced us with a bucket of champagne to celebrate our accomplishments.

With so much to celebrate as many Moscow veteran HSCT patients approach their 1-year, post-transplant birthdays, a select group of my SOFA (Sisterhood of the Fedorenko Alliance) sisters, who are far enough into their recovery to safely travel, took the opportunity to meet in Dallas to savor our successes together and, for several of us, meet face-to-face for the first time.  These are women who have been there for each other 24/7 for over a year, before, during and after their stem cell transplants.  One of the sisters, Kristy Cruise, from Australia, comes to the U.S. once every two years to visit her in-laws.  2014 was one of those years and we didn’t want to miss out on a chance to gather. What we thought was going to be a relaxing few days, turned out to be a mini media tour with tons of sister laughs, good wine, good food and a few tears sprinkled in. One of the sisters, Vicki Wilson, who flew in from Little Rock, Arkansas, contacted several television stations in the Dallas metro area to share our story of triumph and the unique bond that we all share.  ABC and CBS heeded the call and came to interview all of us at the NYLO Hotel where we were staying.  The ABC segment featured all of the sisters together, whereas, CBS decided to take the local angle and featured our very own police officer, Sheli Godbold, who lives in a Dallas suburb.  We kept the hotel staff hopping and the hotel guests guessing as the local media and their camera crews set up their encampments throughout the hotel.  I was even stopped in the lobby by a group of business associates who had seen us on television and wanted to know all about HSCT.  Score!!  Media tour success!!!  Both interviews can be viewed below. ABC Dallas Interview

During our ABC interview.

Click photo to see Sheli's CBS nterview.

In addition to being picked up at the airport by my gracious sister, Lisa Stallings, who gave me an awesome tour of the Gas Monkey Bar & Grill, then Garage, with her BFF Cindy Cathey, I had the privilege of meeting the woman who made it all possible for me to find out about HSCT and, in particular, HSCT in Moscow, through her fantabulous blog, Amy Goes Ninja on MS.  It was an incredible moment with lots of chills (at least for me) ha ha, and that comfortable feeling that I had known her forever.   The entire trip was a dream come true for me, and, quite frankly, there is no way in hell that I could have made this trip alone just a little over a year ago, without a trekking pole, no less (see pics).

Taken after my not-so-graceful, yet, victorius trek through the airport.

Taken after my not-so-graceful, yet, victorious trek through the airport.

I took lots of wonderful pics throughout the week, so, I’ve chosen my favorites and have posted them below (they are clickable).  Until my next post, cheers to HSCT!!

Me with the Ninja Extraordinare, Amy Peterson

Me with the Ninja extraordinaire, Amy Peterson

Vicki & Kristy

Vicki & Kristy

Kristy, Amy, Sheli

Kristy, Amy, Sheli

Vicki and I at Toulouse

Vicki and me at Toulouse

Me and Lisa

Me and Lisa

Me with Kristy

Me with Kristy

NYLO Lobby Bar

NYLO Lobby Bar

NYLO  Entrance

NYLO Entrance

NYLO  Entrance

NYLO Entrance

NYLO  Rooftop Pool

NYLO Rooftop Pool

NYLO Library

NYLO Library

Bubbly Sunset

Bubbly Sunset

This Opportunity Comes Once in a Lifetime

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This Opportunity Comes Once in a Lifetime

After a year of diligent work and follow-through, my Moscow HSCT treatment phase has finally come to an end.  Unlike most patients who receive their entire treatment in 5 weeks, my path was a little off the beaten one.

When I arrived in Moscow, I had 10 enhancing brain lesions. Those lesions were a blessing in disguise being that medical evidence shows the more lesion activity you have, the more optimal your HSCT result may be.  That was the upside to my lesion activity.  The downside was, based on the high number of enhancing lesions, Dr. Fedorenko thought it wise to prescribe an additional 4 doses of chemo over the next year (1 every 3 months) in order to guarantee capping off the monster that had plagued me for over 10 years and disabled me to the point that I needed to use a trekking pole to walk, due to foot drop, and the dexterity in my right hand/fingers was noticeably compromised.

Two weeks ago today, I had my FINAL dose of the Mitoxantrone (the “blue devil”), and decided that it was time to document and share my entire journey in a YouTube presentation.  It’s a condensed version of how it all began, how I got there, the treatment itself, and how it all played out in the end.  There are lots of previously unseen photos and I find that sometimes pictures portray a story better than words alone.  I also wanted to share a Podcast interview that I recently completed with Healthcare Elsewhere, a program that specializes in covering stories about medical tourism.  In that interview, I explain what HCST is, and how it works.  You can click on the pic below or the link above to access the interview.  One of my main goals with this blog is to bring hope to those who may think there isn’t any left for them.  Please feel free to share the link to the interview or my video with a friend or loved one who may be suffering from an autoimmune disease.  It may be the hope they’ve been looking for.

 

healthcare elsewhere for blog

 

Until my next blog post…peace and love from the Pennsylvania countryside!

Send the Call Out…Send the Call Out…

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Send the Call Out…Send the Call Out…

That’s exactly what’s going on here in the U.S. and abroad!  We are sending the call out to everyone who will listen about HSCT (Hematapoietic Stem Cell Transplant) for autoimmune diseases and the hope that it can bring to so many who think that they are out of options. Several Moscow veterans, including myself, and a woman from my area who will be going to Moscow in a few weeks, have had to opportunity to give a shout out to the public, via the media, singing the praises of HSCT.  We’re making as much noise as possible on television, radio, and, of course, social media.

vicki video

Vicki Wilson’s interview with Good Morning Arkansas

kristy 60 minutes

Kristy Cruise’s interview with 60 Minutes Australia.

 

 

 

 

 

 

wtaj interview

My WTAJ-TV-10 Interview with Diana Rees

Carol’s Radio Interview

 

 

 

 

 

 

In the meantime, I had my 3rd of 4 followup infusions of chemo (see post from April 27, 2013 for an explanation of the reason for my followup chemo)  in February and I’m happy to say that I tolerated it very well.  I didn’t even have my usual couple of “crash and burn” days.  I just kept chugging along.  I have one more to go in mid-May and then I’m home free.  My true recovery clock will not begin to tick until that day.

I continue to walk without a trekking pole and have completed my physical therapy about five months earlier than expected because I met or exceeded all of my goals.  As Dr. Fedorenko suggested, it did play a huge part in my physical recovery due to years of lack of use and/or misuse of my muscles.

I did have one bout of bronchitis a couple of months ago which I jumped on right away with antibiotics.  Surprisingly, I recovered from it much more quickly than I have pre-transplant.

Most of my days are filled with normal, everyday tasks without the dread that used to accompany them.  Who would have thought doing laundry could be so fun…not! ha ha   I was fortunate enough and physically able to make a 15-hour road trip to Atlanta last week. That is something I never would have been able to do a year ago.  Heck, I would have been lucky to be able to get in and out of the car or sit for that long a year go.  By the way, I did all the driving.  I was able to meet with Brandon Eurek and his family who have been some of my biggest fans since the moment I announced I was having HSCT (see pic below).

 

brandon and me

Keeping Calm with Brandon!

I also spend a portion of every day trying to spread the word about HSCT in one way or another.  As much as I would like to be banging on the doors of political figures to make this treatment more quickly available to the public at large, I know that could take years.  I want to concentrate on the people I can reach who need help NOW!  If I had $5 for every person who has said they wish they hadn’t waited to have it done, I could afford to pay someone to type this for me!  If you want to have this treatment and you think you could never afford it, you may be surprised what you can accomplish.  If you do have the funds and you’re simply waiting until you’re “bad enough” to have it done, I beg of you to reconsider and move forward as quickly as possible.  Time is not your friend.

As long as HSCT events occur and my post-transplant life evolves, I will continue to keep blogging.  I will, for sure, be posting about my very last dose of Mitoxantrone.  That will be a day of celebration!  It was just a year ago that I was packing my bags for Moscow.  I’m so excited for the next group of HSCTrs who will be filing into the halls of Pirogov during the month of April.  We are all so blessed by this opportunity.  I’m wishing the same for all of you.

Peace and love from the Pennsylvania countryside.

 

Sweet Dreams are Made of This…

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Sweet Dreams are Made of This…

Happy New Year to all!!!

Wow!  What a game-changing year I’ve had!!

Let’s get real!  Over the last ten years, MS has taken a lot from me.  2013 was the year that I decided to start taking those things back.  At the top of the list of my reclaimed losses was my ability to dream.  To hope and to plan for my future without the uncertainty of my MS acting as a constant roadblock to each decision is a gift that I never thought I could receive.  From planning a vacation, a life event, a career change, or my financial future, every question related to those plans was met with the standard answer “I’ll have to see where I’m at with my MS, first.”  Because MS affords you no guarantees but progression and a certain, yet, unpredictable increase in disability, definitive planning was a luxury I couldn’t afford.  I, along with my family, was living a life on hold.

Enter HSCT (stem cell transplant), hard work, and overwhelming support from family, friends and a community, and, today, I’m sitting here helping my daughter plan her wedding, which I will be walking to without the aid of a trekking pole.  I will be driving to a wedding in South Carolina in May.  Soon, I’ll be reserving my vacation for the summer of 2015 which won’t be limited to accommodations that don’t have stairs.  I could go on and on about the limitations that no longer exist in my life because I had a stem cell transplant to halt the progression and activity of my MS.

Imagine someone being wrongly-convicted of a crime and imprisoned for 10+ years, only to have the warden come to your jail cell and say, “You’ve been pardoned.  You are free to go.”  THAT is how I feel!  Reprogramming my brain to concentrate on the things that I CAN plan on doing, instead of what I CAN’T, is not as easy as you might think, but, I’m up for the task!

Recovery Update

–  I have successfully completed two of the four additional rounds of followup chemo that were recommended by Dr. Fedorenko when I was in Russia.  They have been uneventful and I have tolerated them well.  I will have my last dose in May, 2014.  My true recovery clock will begin when that goal has been reached.

–  I continue to take physical therapy three days a week.  Because of that, my strength and capabilities have increased tremendously.  Not only do I have to recover from five weeks of hospitalization, but, years of muscles and joints that were re-wired to function improperly.  I have a long way to go, but, I no longer feel like I’m trying to beat my MS clock.

– To date, I have not used my trekking pole to walk or navigate steps since June, 2013.  I do still utilize a foot brace for my right foot which still has a certain degree of foot drop that waxes and wanes.  I foresee that changing, but, will be completely content if it remains in that condition for the duration.

– I have and will continue to spread the word about HSCT and to support my SOFA (Sisterhood of the Fedorenko Alliance) Sisters who have been and will be going to Moscow for their own fight for freedom.

Although my posts will remain less frequent than when I was in Moscow, I will do my best to keep you updated on my progress.  Just know, that in between those posts, I will be living my life to fullest and free from the chains of my MS.  Sweet dreams are made of this!!

Looking forward to a new year and my new life!

Cheers to 2014!!

Peace, love and a Happy New Year!!

Brooke

I’m Not Broken, Just Bent-6 Months Out

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I’m Not Broken, Just Bent-6 Months Out

MRI NEWS

It’s been over two months since I last posted, and, honestly, I was waiting until I had my first brain MRI since Moscow to be able to share all of my recovery news.  Yesterday was that day and I’m pleased to announce that all of my lesions have decreased in size and all but one of the ten enhancing lesions no longer enhance.  The one that did enhance, just slightly, was the big Mamma Jamma that was about the size of a dime and looked like someone had shot me through the top of my head.  It is now the size of a shriveled pea with just a touch of enhancement.  I fully intend for that to be as dead as a doornail after my next three chemo treatments.  My next treatment is in two weeks and the last one will be in May, 2014.  For those of you just joining in, based on the lively activity of my brain lesions upon arrival in Moscow, it was decided by Dr. Fedorenko that I may, in fact, need four additional followup treatments of chemo to snuff out my MS fire.

RECOVERY NEWS

As is the typical course of HSCT, post-transplant, a patient’s symptoms initially improve and then worsen for the first 6 months then begin to stabilize and recover over the following 2+ years.  My honeymoon phase lasted a little longer than most.  Most of my old symptoms didn’t start returning until my 3rd month after HSCT (August).  Initially after treatment, my foot drop was much less pronounced.  My MS Hug was virtually non-existent.  My right arm and hand were stronger and much more fluid in their movements.  My balance had improved substantially and I no longer had the need to use a trekking pole to navigate in public.  Add to that my ability to go up and down stairs with more agility, and I was flying high.  Had I beaten the odds and all of my improvements were going stay without ebbing first?  Ummm…NO!  In August my MS Hug (painful, squeezing muscle spasms around the ribcage) began to creep back into my life consistently, rather than sporadically.  My foot drop, which never recovered 100%, increased again.  It varies from day to day.  My right arm, hand and fingers have gone back to their old ways of tightening up and fingers curling in at will, but only 50% of the time and not 100% of the time as they would in the past.  The very good news is that whatever my brain/body lacked in the past for me to be able to walk free of my trekking pole has been restored and I continue to walk without it.  I haven’t used it since the beginning of June.  My balance, although sketchy on some days, remains consistently better than pre-transplant. I have also retained the ability to be able to navigate steps one foot at a time rather than two-stepping up and down each  stair.  Those improvements, alone, have completely changed my outlook about my life/future and have kept my psyche from going to a dark place.  Depression is common post-transplant for HSCTrs.  There are many reasons why and it’s different for each person.  I, however, am unrelenting.  MS held me captive long enough.  It’s my turn, now.  No time for depression!

I've fought the battle and I've won the war!!

I’ve fought the battle and I’ve won the war against MS!!

Although I’ve been relatively mobile and on-the-go since about my 2nd or 3rd week back from Moscow (shopping, restaurants, driving, etc.), it’s only been in the last two months that I have gradually started getting out to social events (weddings, Halloween parties, etc. [see pics]) with larger groups of people.  I continue to be very careful about what I touch and my hands are cracked and raw from repeatedly washing them.  Cold and flu season quickly approaches, so, I find myself paying close attention to who’s coughing or sneezing in close vicinity to me.

I've put a spell on my MS!

I’ve put a spell on my MS!

My hair continues to grow in quickly, and, sadly, but comically, it is incredibly curly.  I’ve never had curly hair in my life, though, I do get a laugh out of it each morning before I slather on hair product to keep the curls at bay (see pic below).  I have had it colored and highlighted due to the fact that it grew in with the top entirely gray (only had a few grays prior to transplant), the sides light brown and a solid white patch about the size of a penny on the side of my hairline of the forehead.  I’ve been told that it may not last and will eventually get back to it’s straight, light brown.  Like they say “You can’t keep good hair down!”.

Hair 5.5 months post-transplant.

Hair 5.5 months post-transplant.

For me, the hardest, maybe I should say most awkward part of recovery, especially since I’m now out in the public eye, is being asked if the treatment was successful.  Many times, people will glance down first, see that I’m still limping and still wearing a foot brace, cock their head to the side looking confused and say “Well, did it work?”.  First off, I know they’re asking because they care and I appreciate every ounce of concern.  Second, there is no short, sweet answer to that.  I could just say “absolutely” and be on my way, but then they would still be wondering about that limpy leg.  What I really want to say is “Well, the only real way to tell if it ‘worked’ is MRI evidence that it has been halted.  I may not see 100% reversal of ANY of my prior symptoms.  I may see a few.  However, my MS will no longer progress and it will not be active.  That is the true definition of ‘It worked’.”.  That would make for one long conversation.  I think I’ll stick with “Absolutely!”.  ha ha  You see, I had MS for many years before I started limping, with a laundry list of painful symptoms that no one ever saw or I hid very well.  The limpy leg may be here to stay…maybe not.  Only time will tell.  On that note, I am still faithfully going to physical therapy 2-3 times a week.  At the advice of another HSCTr, Keith Moore, a chiropractor from Canada, I have shortened my sessions to 30 minutes each from 60 minutes.  The 60-minute sessions were killing me with muscle and joint soreness and I was pushing way too hard.  It was a great idea, Keith!  The core strengthening has helped my balance and posture which aides in my ability to walk for longer distances and more concisely.

MY POM POMS

Cheering on my HSCT friends around the globe.  Give me an H-S-C-T!!!

Cheering on my HSCT friends around the globe. Give me an H-S-C-T!!!

Since my departure from Pirogov in Moscow, I have had five more MS sisters and a brother have stem cell transplants there (5 or 6 more scheduled from the US, Finland, Norway, Australia), another sister in Heidelberg, Germany, and, most recently, one in Chicago.  To the best of my ability, I have been cheering them on with the assistance of the caricature to the right (thank you Presque Isle Printing) and sharing their success stories with as many people as I can.  The word is getting out and I’ve been contacted by people from all over the globe who are interested in having HSCT.  I just looked and this blog is now being watched by individuals from 70+ countries as diverse as Algeria, Argentina, Greece and more.  I told you I had a big mouth!  Well, that, plus I want to tell as many people I can with MS, that there is hope.  Along those lines, I am continuing to give newspaper interviews and to appear at speaking engagements to spread the word.  I’m not going to shut up, so, don’t even try!  🙂

WHAT’S UP NEXT?

Next week, I will have my first appointment with my neurologist since my return from Moscow.  I can’t wait to share my experience with him and show off my walk down the hallway without my pole.  The following week, I will be receiving my 2nd of 4 doses of Mitoxantrone (chemo) and will most likely be on the DL for a week or so…just in time for Thanksgiving.  I have too much to be thankful for this year to list!  I’ll have to start with thanking you for tuning in this past year and all of your support along the way.  Hopefully, I’ll be posting around Christmas time.  Until then, Happy Thanksgiving!!

I’m Blue da ba dee da ba die…

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I’m Blue da ba dee da ba die…

No, no, no!  I’m not “blue” as in “depressed”.   That would be ridiculous…or would it?!  I did a lot of research regarding this treatment and its potential emotional aftermath waaaaay before I said “Yes, to the HSCT dress”.  I came to find that depression following stem cell transplant is more common that I would have expected.  Being the eternal optimist, I simply couldn’t imagine that once you rid yourself of the progression of a disabling disease, that you wouldn’t want to do anything other than rejoice and give thanks for this life-saving gift.   However, I can see where it could happen.   Having this treatment, especially when you find yourself fundraising for it, blogging about it, and being interviewed by the media who are interested in it is a very time-consuming, overwhelming task filled with extreme highs.  It’s like planning for a wedding.  For months, you spend every waking moment planning for your dream to come true, and after the crowd has thrown the last grain of rice and the bride and groom ride off into the sunset, they are left with getting back to life as usual.  There’s laundry to do, grass to mow and bills to be paid…BUMMER!  If you’re not prepared for your “new normal”, then you may find yourself susceptible to an emotional hit.  SHA-POW!!   With a stem cell transplant for MS, in particular, I don’t care how much an MSr (me included) says to themselves “I’ll be completely satisfied if the only change is my MS being stopped”, and “If I get no reversal in symptoms, I’ll be fine with that.”   Some part of you secretly wishes that you will see an immediate positive change in your symptoms.  We all do it.  There’s no denying it.  And, even though we’ve all been told that you most likely won’t reach your maximum potential for 2 years on average and possibly even more from 3-5 years, we live in a society of instant gratification and the “quick fix”.  We want results NOW!  Lord knows, I’m one of those people.  Don’t even try to tell me that I have to wait for something…I’ll find a way around it!!  But, not this time.  Recovering from HSCT will test your will as much or more than when you struggled with your uncertain future with MS.  Remember?  The one where you knew that you would end up in a wheelchair, but, you weren’t sure when.  The one where you had to decide whether you needed to spend your money making your home handicap-accessible or spend it on a beach vacation before you’re no longer able to walk on the sand?  I can honestly say that I have NOT suffered from depression post-transplant, and when I find myself in a position where doubt could creep in, e.g., my foot drop is worse on a particular day, or I can’t lift my knee as high as I think I should be able to during PT, I acknowledge why I’m feeling frustrated and then, in the words of Cher before she slaps Nicolas Cage in “Moonstruck”, I say to myself “SNAP OUT OF IT!” (see mini-clip below).  It works for me.  I have no patience for whiners, and I don’t want to end up being one!  If you catch me whining, just do this…

Now, about the “blue” I was talking about.  That blue is the color of the chemotherapy drug, Mitoxantrone (Novantrone), that I was given this past Thursday and was the first of four doses that I will receive every three months over the next year.  If you’re just tuning in to my story, this followup chemo was not part of my original treatment plan, and I was unaware that it would be prescribed until after I arrived in Moscow and they found that instead of just a few enhancing brain lesions, I had actually had 10!!  Given my highly active lesions and the ineffectiveness of four previously-prescribed MS drugs (Betaseron, Copaxone, Gilenya & Tyrsabri), it was decided, that as a precautionary measure I would take this one extra step to ensure that no rogue T or B cells would get any crazy ideas about making an appearance at any point in my future.  Even though the extra chemo was recommended, but not mandatory, there is no way I was going to allow an incredibly stubborn MS to veer off course…ever.  Mitoxantrone is nicknamed the “Blue Devil” due to its color and its potency.  It belongs to the general group of medicines called antineoplastics. Prior to its approval for use in MS, it was used only to treat certain forms of cancer. It acts in MS by suppressing the activity of T cells, B cells, and macrophages (white blood cells within tissue) that are thought to lead the attack on the myelin sheath.  I must say that given the amount of chemotherapy that I had received in Moscow, and the lack of side effects that I experienced afterward, I wasn’t too concerned about the drug itself.  I was more concerned about the care that I would receive during the infusion and the attention to detail that was always a part of every second of every day while in Russia.  Upon entry to the infusion center, reality struck a chord in me after quickly noticing that in a large, open room of about 20 patients, I would be the only one receiving chemo for MS.  The others were battling cancer.  Although it’s very tempting to assume that this room would be filled with sorrow and gloom, I was thrilled (more for the others than myself), that this room was filled with humorous, pampering, understanding, happy nurses who were 100% on top of their game, and were more than happy to cover up my IV entry site as I requested (out of sight, out of mind).   Many of these patient’s infusions last for 5-6 hours.  Mine was only 2 hours.  I was expecting to be chair-bound for that time and was pleasantly surprised when I was told that I could take my IV pole to the restroom with me at any time and even get up to stretch and move around.  If that wasn’t enough, I noticed that other infusion center veterans were heading up to the snack bar (see pic below) for fruits, crackers, coffee and refreshments.  Did I mention they have complimentary Wi-Fi?!  I’m thinking “I love this place!!”  Just when you think it can’t get any better, a nurse goes from patient to patient asking if they would like a cupcake.  A CUPCAKE???!!  Pinch me!  Am I really getting chemo right now??  Actually, you don’t get the chemo first.  Initially, and for the duration of the infusion, you receive saline, followed by a steroid, then an anti-nausea med (Avelox).  Then, and only for the last 25 minutes of the infusion, comes the infamous blue bag of solution (pic below).

The Blue Devil - Mitoxantrone/Novantrone

The Blue Devil – Mitoxantrone/Novantrone

The Snack Bar

The Snack Bar

The Fantabulous Nurses

The Fantabulous Nurses

Me and my Kindle during chemo.

Me and my Kindle during chemo.

If only this seemingly happily-ever-after story would have continued…and it did…for about 48 hours.  That’s when I hit the wall.  The day of the infusion and the day after were perfect.  In fact, the steroids that were included in the infusion pretty much wiped out any aches and pains that I had been having from physical therapy.  I woke up Saturday morning at about 8 a.m., much later than my usual.  I notice that my MS Hug had returned with a vengeance, making it difficult to breath deeply, my right foot felt like I was dragging along a dead bear, and it was very difficult to keep my eyes open.  Damn!!!  Before you go freaking out and thinking “Oh my God, her transplant didn’t work!!!”, please keep in mind, this is exactly what happens when you’re in my position and given chemotherapy.  My MS symptoms will worsen and then they will subside.  It happened the first time I had chemo and it will happen 3 more times within the next year.  I slept all day Saturday in the Mom Cave.   Even my cat sensed that something was up and wouldn’t leave my side.  Sunday, I managed to make it to the couch in the living room where I watched “Airplane Repo” for about 8 hours straight.  I considered changing the channel, but, that would have required moving my fingers to click the buttons which was, simply, not an option.

Today is Labor Day, and I decided that it would probably be wise to get a shower and change out of the clothes I had been wearing for the last 48 hours (eventually, someone was going to notice).  ha ha   I’ve had no nausea or vomiting, so, I figured if I got dressed, threw on some makeup and went for a drive it would make me feel alive again…and it did…for about 45 minutes.  That’s when I headed home.  It’s turned out to be a beautiful day and I know that this period of ill-being is just a blip on the radar of what will be a life with MS not haunting me.  Let’s not forget, I haven’t used my trekking pole for 3 months, I can safely navigate steps and I become more independent every day.  Before you start thinking “Oh, poor Brooke”…please don’t.  I’ve weathered worse and the pic below of me, taken a few hours after chemo, shows that my spirit has not been broken.  My next chemo treatment will be Thanksgiving week…Do you believe it?!!  Oh, well.  I always eat too much anyway.  Until next time.  Peace and Love…from the Cove.

Shock the Monkey

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Shock the Monkey

Please disregard the previous version of this post that you may have received earlier today. This is the post in its entirety.

Over a month in the making, this post focuses mainly on what I’ve been doing in an effort to follow through with Dr. Fedorenko’s post-transplant recommendations. He prescribes three main requirements for a successful recovery. They are Good Attitude, Good Food and Physical Therapy. In addition, I will be discussing the improvements that I have seen since returning home. Some of them are pretty cool!!

Good Attitude

Well, I’ve always had a good attitude, and when you suddenly find yourself not having to use a trekking pole after three+ years of relying heavily upon it to navigate in public, your attitude certainly gets a little boost. That’s right. Since my last post, I am no longer dependent upon using that pole (nicknamed Tiff). I do still wear a foot brace for the foot drop, but, it is quickly becoming more of a hindrance than helpful. I’m not sure exactly what happened, but after living with this miracle for over month, I have come to the conclusion that it has something to do with my brain being able to more quickly process what I’m seeing as I’m walking and my legs now receiving the messages that were previously prohibited by damage from MS. Add to that the fact that my balance has improved by at least 50% and I can’t help but have a good attitude. The portion of my balance that continues to need work is the part that requires both feet to be working in unison to provide a steady gait. My brain is ready to hit the trail, cut my right foot is hesitant to do so, but it’s taking baby steps to get me where I’m going. That leads me to my next post-transplant recommendation…Physical Therapy. Don’t worry, I didn’t forget about the Food.

Physical Therapy

Shock the Monkey!

This picture evidences another one of the miracles that has happened since my HSCT, If you’ll notice, the right foot with the electrodes connected to it is flipped up, whereas the left foot is relaxed. Why so miraculous? Last October, after six weeks of this same stimulation treatment, this foot was completely limp. No response at all. There’s no question in my mind that the HSCT is responsible for that new foot-to-brain connection. That offers great hope for potential recovery of my right foot drop which was the reason for all of my past falls. Now, we just need to strengthen and teach it how to walk all over again. In addition to stimulation therapy, my therapists are working on balance, and stretching and strengthening of my muscles that have been dormant for so long. Something else that continues to improve is my ability to navigate steps. Instead of two-stepping up the stairs as I have for four years, I am going up one step after another with alternate feet. It may seem like a small feat, but it is a huge victory for me. I’ll be honest…the physical therapy is much more difficult for me than the actual HSCT was. After four weeks of therapy, I am still in the “very sore” stage. Take a look at a few of the sometimes grueling, yet, sometimes comical exercises that I endure. These pics are all clickable for a closer view and explanation of what’s going on.

Owey!

Balance Board

Toes to Nose

Command Central

HealthSouth Rehabilitation

Good Food

As most people do after they’ve been released from a lengthy hospital stay, especially when it’s in another country, you do a week or two of eating everything you’ve been unable to eat while hospitalized. That was about it. I’m trying my best to eat fresh fruits and vegetables and cut the fat off of all of the meats that I cook. Yes, I’ll have the occasional small ice cream cone and I will not give up my fountain Coke, but that’s all of the splurging I intend to do. I’m really not a foodie. I am well aware of the trepidation about the food for others who are having their HSCT in Moscow. Trust me, you’re going to be way to preoccupied to worry about food.

Additional Improvements

An especially pleasant improvement that I think I had for weeks and didn’t even notice it, was my MS Hug disappearing. The MS Hug is a sometimes very painful muscle spasm that wraps around your ribcage from front to back. I had it for about 5 years and sometimes the squeezing sensation would be so strong that you could barely take a breath. No longer having it allows me to stand up straighter, which assists in my ability to walk. I’ve had one or two twinges of it within the past month which were just enough to remind me how glad I am that it’s gone, but they were temporary and hopefully, will not return.

In the last two weeks, the numbness on the ends of my fingertips has started to decrease. They are definitely not 100% yet, but I would say I have seen about a 30% improvement. Instead of my hands feeling like I’m wearing winter gloves, they feel like I’m wearing thin, plastic gloves. On average, I’m expected to see a majority of the improvement in my symptoms over the next two years, so, I’m very pleased to see these small changes early on in my recovery.

Miscellaneous

Two weeks ago I had the pleasure of meeting with my hematologist/oncologist in Pittsburgh. He was pleasantly surprised that I was no longer using my pole and was very pleased with my bloodwork results…all were normal. I will continue to see him every 3 months and he is arranging for my 3 doses of chemotherapy (Rituximab, aka Rituxan) that I will be receiving over the next 9 months. For those of you who may have missed the chemo story earlier on, I will be taking those based upon the fact that I had 10 enhancing lesions upon my arrival in Moscow and that my MS had previously failed to respond to 4 MS drugs. My MS is a very stubborn one and the doctor just wants to make sure that it doesn’t get any crazy ideas about making any appearances in the future. These 3 extra doses are not mandatory, however, why would I come this far and not take these 3 extra infusions for safety’s sake? Bring it on. I am happy to report that my hair is making a comeback (see pic below). Within the last 3 weeks it has really taken off. Yes, I still look like a refugee and I will be covering it with scarves and hats for a couple months, but, I’m happy to have it back. I do believe it is going to be the same color, but not certain of the texture…please be straight, please be straight, please be straight. ha ha

Comeback!!

As always, I would like to thank everyone for following along and continuing to support me during this recovery period. I have a LONG way to go. I am now doing my best to support my fellow MSrs who are heading off to various facilities around the world for their HSCT. They all amaze me.

A VERY SPECIAL THANK YOU to…The staff at HealthSouth Rehabilitation’s Duncansville facility for tolerating my giggling. You’re the best!!

Hello…is it Me You’re Looking for?

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Hello…is it Me You’re Looking for?

Well, it’s been two weeks and two days since I stepped foot back onto U.S soil.  I quickly found myself dealing with some serious chemo fatigue coupled with the residual effects of sleep deprivation.  The kind of fatigue where you fall asleep in the middle of a full-on conversation…embarrassing!   My plan was to take a week off from blogging and to jump back on to let you all know how things were going.  Three days into that plan, when passing my husband in the hallway, he says “Do you have a rash?”  I’m like “What do you mean?”.  I was wearing a t-shirt and he said “It looks like you have a rash on your neck.”.  I race into the bathroom, and, sure enough, I do appear to have a rash just peeking out over the collar of my t-shirt.  It looks like heat rash and it doesn’t itch, so, I wasn’t panicking.  I figured I’d assess the situation further, and lift up my shirt in front of the bathroom mirror only to find that I have a rash from my neck down to my waist and from my neck to lower back.  WHAT??!!!  This was Monday the 10th.  Late Monday, I shoot an e-mail off to Dr. Fedorenko in Moscow.  He seems to think that it could be a food allergy, but, I’ve never had any food allergies, nor had I eaten anything out of the ordinary since my return.  He recommends a short course of steroids (my favorite…NOT!) and recommends that I see my PCP.  I call my PCP on Tuesday.  They can’t see me until Thursday morning.  No problem, except for the fact that, by Thursday morning, I had a low-grade fever, chills, and the rash is turning into something that looks more like hives.  I continue to try to nail down what food or environmental item I may have been exposed to, all the while, my strength, which is already compromised due to being in an 11 x 12 room for five weeks continues to deteriorate.   I can survive a stem cell transplant like a champ, but, throw a fever at me and I’m down for the count!  REALLY?!!  By Wednesday night, I had been living on the couch for almost three days wondering what the heck have I done to myself?!!  I had this fabulous run with no complications, no pain and none of the typical HSCT issues that could arise…NONE!  My HSCT experience was nearly flawless.  I was seriously considering submitting my photo to all of the medical dictionaries, under the entry of HSCT Perfection!  Was all of that going to have to go up in smoke?  Wahhhhhhh!!!  I finally get to see my PCP on Thursday morning.  It is quickly evident to him that I was shaking like a leaf, my blood pressure was low (as usual!), my heart rate was 138, my fever was 101.something, my appetite was gone, and the now “itching rash” had spread as low as my mid-thigh.  We go over every drug that I was currently taking.  There were only two…Bactrim (for bacterial infections) and Acyclovir (for viral infections), oh, and Tylenol for the fever.  The Bactrim and Acyclovir were both given to me upon my release from the hospital and I had been taking them from day one that my transplant regime began.  They are both standard HSCT drugs.  Bottom line was that I had been taking them for a month, already.  My PCP, took the rash very seriously, and quickly nailed down, after ruling out a rash from Rituximab use, and a rash from Engraftment Syndrome, that it was most likely due to prolonged use of Bactrim, which he said was common.  He pulled the Bactrim out of the lineup and replaced it with once-a-day Levoquin, kept the Acyclovir, put me on a two-week course of Prednisone, and sent me for STAT bloodwork.  He called me that night (after hours…kudos!) to say that all of my bloodwork (platelets, WBC, hemoglobin, etc.) were all completely normal.  He did say that my liver function was a smidge high, but that was to be expected following chemo.  I immediately, sent an e-mail back to Dr. Fedorenko, who e-mailed back right away to say that my PCP had done exactly what he would have done.  What a relief!   We had picked up the meds on the way home and I started them ASAP.  By the next day (Friday) at 1:00 p.m., I was not only able to make it off the couch, but my fever was completely gone, I did four loads of laundry, cleaned, dusted, swept, and ate like I hadn’t eaten in weeks.  WOW, WOW and, WOW!  I had a followup appointment with my PCP on Monday and he was very pleased with my results.  I felt so good on that day,  that I convinced mom to stop by Walmart with me (I hadn’t been out in public since my return home) and then I talked her into letting me drive home from there (about 15 miles).  I had already been given permission to drive before I left Russia, but, my dizziness and sickness had kept me from doing so.  I felt like I was free.  I have been driving ever since and even made a couple of trips to Altoona (about 30 miles away).  It was during these independent jaunts, that I discovered that I really didn’t need my trekking pole for my balance as much.  Normally, I would wear my foot brace (which I did), and I would have my trekking pole for balance and stability while lifting my hip which lifts my foot to clear the ground.  This trip, each time I would walk from the car to a store, I would take my trekking pole, but, I found mysef carrying it in the air in my hand.  Pretty cool stuff!  In addition, although I still use the brace because my leg and foot are weak, in general, from being cooped up with a lack of activity for so long, the brace and shoe seem to try to slip off of my foot as my foot is trying to very gently turn itself into its correct (forward) position.  This is all within the past few days, so I’m still letting it gel, but it’s so fun.   I hadn’t divulged this informaton to my husband, because, when you tell people that things are getting better, then they stare every time you walk, over-analyze and don’t see all of the changes that you are feeling and may wonder why you’re not skipping down the street.  Trust me, there will be NO skipping in my immediate future.   However, last night, he asked if I wanted to go out to dinner and when we pulled in to the restaurant, normally, I would have grabbed my trekking pole and his arm after he helped me out of the car.  This time I said “Go ahead.”  He said “Don’t you need your pole?”  My reply, “Nope!”  “Do you need my arm?”, he says.  I respond, “Just don’t go too far, in case I do.”  He stands back, watches me get out of the car unassisted, walk across the uneven parking lot, up onto the sidewalk, across a carpeted floor and to our booth, all without my trekking pole or his arm.  I was totally testing myself and was petrified because I knew that I could be face-planting at any second, but, I DID IT without a single bobble.  He was impressed and asked when I started doing that.  I told him I had been practicing all week.  He proceeds to tell me that he was going to have to give all of his friends an update, because the day before he was telling them all that I was still walking with my pole when I was in public.   Then, today, we went grocery shopping and the shopping carts that I used to (8 weeks ago) have to hang onto for dear life in order to walk, I was able to gently place my hands on and just kind of tap along while I kept my balance and walked all on my own.   It gave me that feeling that a baby must get when attempting their first steps and one parent releases them to walk across the floor to the other parent and they make it the entire way without stumbling and everybody cheers.   Yep.  That was me at the Creekside Inn last night.   Nobody else in the restaurant had any idea that they were witnessing a miracle, but, my husband certainly did seemed impressed.  Hurray for HSCT!!  Whoop, whoop!!

I will continue to take my Prednisone for its course (love the instant 8 extra pounds of facial/abdominal weight within 3 days!) and I finished my Levoquin today.  My appointment with my hematologist in Pittsburgh will be in two weeks and I will begin my physical therapy, which my PCP was kind enough to prescribe, within the next three weeks or so.  I consider myself just scratching the surface of what is normally up to two years of initial improvement.  And, let’s not forget, at this moment, my MS has been completely shut down.   There will be no more trips to the infusion center for the MS drug which made me feel worse and no more years of painful injections.

I have spent the last week doing what I had planned on doing my first week home.  Unpacking my luggage, rearranging the house, doing tons more laundry, cooking, and, of course, resting in between.  You might be wondering how my other MS symptoms have been.  As expected, and for an average of 3-6 months following HSCT, I do and may continue to experience a worsening of some symptoms.  Not that a fever helped the situation, but, my fingertips are more numb than usual and the dexterity in my right hand is less than stellar.  Patience is an HSCTrs biggest challenge.  I may have mentioned that “patience” is at the top of my “Brooke Sucks at These” list.  lol    But, I’ll get over it…in time.  Always at the top of my “To Do” list will be paying it forward in the form of shouting it to the mountaintops about HSCT and its benefits.  There’s no need for MSrs like me to suffer any longer than they have to.  Why not use my big mouth to make that happen?

I can’t thank you all enough for all of the private messages and e-mails asking how I’m doing.  I think this post pretty much spells it all out.  I will, of course, continue to blog as events (good, bad and ugly) unfold.  However, I will not be able to feed the addiction that I’ve since been informed of that took place every morning for the coffee/tea crowd while I was blogging from Russia.  I will be setting out on new, recovery-related adventures, as well as watching the lives of fellow HSCTrs progress as they start to make their own way to Moscow.  One of my HSCT sisters begins her treatment tomorrow, and there will be many more to follow within the next year.  I am so anxious for their life stories to be re-written, as well.  What a gift!

In the meantime, peace, love and recovery…from the Cove!

My Recovery Room!

My Recovery Room!

The Wanted…Mom’s Companion/Caregiver/Solo Advice

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The Wanted…Mom’s Companion/Caregiver/Solo Advice

By popular demand (mom has been contacted by many), my mom has put together a recap of travel advice for those traveling with a companion/caregiver or if you are traveling alone.  In the meantime, I am working on my own update covering my first week at home (to be posted in the next few days).  Here ya go, Mom…

ADVICE FOR THOSE TRAVELING WITH A CAREGIVER/COMPANION , OR TRAVELING ALONE

This is a recap of my Russian experience as an accompanying person with my daughter for her HSCT treatment.  As you prepare for your trip, and throughout the entire experience, if you encounter any problem, or have any question, please know that you can contact me at any time via e-mail – or friend me on Facebook (Connie Taylor) and we can message – for solutions to any problem.  You will never be alone and we will follow your progress toward this miracle you’re about to experience from day 1 to your return to your home. My e-mail address is:  cct41@atlanticbb.net.  Please put MS QUESTIONS as the subject line so I don’t delete the e-mail in error.

These are the things the caregiver may be concerned about:

Emotions:

You may feel guilty about the person you’re accompanying going through so many medical procedures, and you’re out there enjoying the scenery.  There is no need for guilt. You can be there for them, whenever they need you to be.   After I saw the hospital, doctor, and how organized and caring this process is, any guilt I had subsided.  Bottom line, you don’t have MS, they do.  You can’t fix it.  Dr. Fedorenko (“Dr. F.”)  and his staff will.  When they are in isolation. there is a constant stream of staff coming in to do tests, IVs, injections, etc., so, it’s not as ‘lonely’ as it might appear.  They are tired and need rest.  I knew she was in good hands and I had total faith In my daughter’s determination, the HSCT process and the care she was going to receive.  At that point, I decided to make the most of it – we will never have to do this again.  NOTE:  I never once experienced any concerns about safety of my person or my property.   I never found the people of Russia to be anything but pleasant, friendly and helpful.

Airport to the hotel:

The taxi ride from the airport to the hotel is anywhere from 1-2 hours depending upon which airport you fly into.  We flew into SVO.  It is a beautiful airport and their staff was very accommodating.  We did arrange with our airline, Delta, for Brooke to have a wheelchair.  They provide you with an assistant who will help you navigate through the airport  and allowed us to avoid all of the long lines at customs.  Basically, you are given VIP priority.  Dr. Fedorenko arranges for you to be picked up at the airport upon your arrival in Moscow and deliver you directly to your hotel.  The cost of that taxi was $130.  Hang onto your hats when you get into the taxi.  Driving in Moscow is fast and furious and the lines on the road are nothing more than a suggestion.

Hospital:

Dr. Fedorenko is interested in the patient’s care, comfort and results – not money.  Dr. F speaks English, e-mails in English, is taking lessons, and his staff will as well, to improve English.  He will answer any and all questions that you may have about the patient that you are accompanying.  Dr. F’s staff is kind, pleasant, organized, efficient and well-trained.  He is involved in every aspect of your treatment, right down to making sure that your fridge is fully stocked with protein drinks.  The hospital’s protocol to insure an infection-free facility is amazing and followed faithfully by the staff.  Cleanliness is a top priority. The hospital may appear “old-school”, not full of bells and whistles, but they get the job done and they get results  The caregiver is always treated as a guest, permitted to share any/all meals with the patient, made to feel comfortable, and never made to feel as if you’re in the way.

I shared some meals but found that some of the Russian foods were something I could not get used to.  They’re healthy meals and we should all take a lesson from them. Brooke learned to eat most things. Refusing to eat would delay HSCT progress and goals. The patient must go with the program.

Security and transportation to/from hospital:

Security at the hospital is tight. You can enter only via the security building and showing the pass provided by Dr. F.  You are given a paper with the taxi company’s phone number, hospital address, and Dr. F’s mobile phone on it.  You show that to the concierge at the hotel and they know to call a taxi. The taxi driver must check in with the concierge before leaving with you so it is completely safe.  You may need to show him your paper with the hospital address on it.  The fee to the hospital is one set by the hotel/taxi people.  It is 600 rubles – $ 18+ US Dollars.

There is a high, wrought iron fence around the entire hospital property and no one can enter without the pass.  Dr. F. is the only one who can call the taxi company for a cab to take you back to the hotel. You tell him what time you want to leave, and he will schedule it and tell you when they will be there. They will pick you up outside the security building. You don’t need a pass to leave the property but must go through the security building again to get out.  The taxi he calls must have the number 956 (part of their phone number) on the side of the vehicle.  You can get a business card at the hotel desk with the address of the hotel on it.  You just say VEGA (pronounced like Vegas without the S) and show the card so they know for sure where you want to go.  The fee for this ride can vary but is lower than the hotel due to an agreement with the hospital.  It can be from 300 to 400 rubles – $ 9.00 to $12.00.

Patient:

The patient’s attitude is a huge part of the battle.  You both should always “keep your eye on the prize”-to leave MS in Russia.  A positive outlook, cooperation with the doctor and nurses, accept your surroundings and embrace the opportunity to do this as a blessing.

The facilities surrounding the patient are quite nice.  They are clean, private, they have a fridge and a microwave oven. Dishes are kept in the patient’s room and are used only by that patient throughout the procedure. Disposable paper products are not readily used in Russia anywhere.

Between medical procedures, books, electronics, and much-needed naps the patient will have a lot to fill the day.  WI-FI is available in the room.

Everyone is different.  Some patients required pain meds, Brooke never did, and with each patient the staff develops new ways to keep undesirable reactions to a minimum.

Dr. F’s experience with HSCT has grown in leaps and bounds, he knows what works to relieve chemo nausea, pain, infection, etc.  He has tweaked the necessary medications to make this process successful and without distress to the patient.  These meds protect the gastric system, liver, kidneys, etc., ensuring the best results possible.

Communication/Electronics:

As the person on the outside, these items were my greatest challenge – but thanks to electronics were made easier with specialized APPs available for your phone, tablet, or whatever electronic device you bring with you.

I did not bring a phone, nor did I need one.  Brooke also didn’t buy a SIM card for her phone to get service in Moscow, but instead used a APP called Viber on her Smartphone to talk and text to home and is free to use.  It worked very well she didn’t have to sign up for international talk and text with her phone carrier, Verizon.   I Skyped with Brooke and with my family in Pennsylvania. I had a Nexus 7 tablet.  I loaded a currency conversion APP that works without WI-FI, and a translation APP from ECTACO (find it on-line) that also works WITHOUT WI-FI.  Google has a translation APP but needs WI-FI which doesn’t help you in the grocery store, flea market, or asking directions. The ECTACO costs $60+ dollars but was worth every cent.   Facebook was a constant contact between home, the hospital and the world.

I also had a Nikon camera with me at all times. There was always something interesting to take photos of.  I got a special connector from Amazon which connects the camera to my Nexus 7 tablet and uploads the pictures into a Gallery on my tablet.  I didn’t take a computer to upload them into.  This worked wonders.  Brooke would tell me what she was looking for as a special souvenir for someone, I would go to the market and take pics of various ones, upload them into the Nexus, Facebook them to Brooke, she would pick the one she wanted, and I would go to the market the next day and buy it. Worked great!!

Currency conversion:

Your currency conversion APP will be your best friend – but eventually you will be doing it in your head. A ruble value varies day to day, but on the average it is 31 cents.  When a vendor told me the price of something I mentally multiplied it by 3 and added a few dollars to know what the US Dollars equivalent was.  It’s confusing because rubles have zeros everywhere and you think you’re spending tons of money but you’re not.  Ex:  1,000 = $ 30.00.  500 ru = $ 15   100 ru = $ 3.00.  You get it.  At the market EVERYONE will bargain for the price with you.  If you see something you want, decide how many US Dollars it’s worth to you, convert that to rubles and start the bargaining.  Pause while you’re calculating and the price starts going down because they think you’re going to walk away.  I got very good at it – you will too.

Atm Machine / Bank Fees:

There are ATM machines in the lobby of the hotel.  Only one has an English option.  You use your bank card, then wait, (I didn’t but I learned) and a choice of English will come up.  Your bank will charge you a fee each time you use the machine just like in the States.  IMPORTANT:  Before you go to Russia, talk to your bank and make them aware that you will be using an ATM in Russia during a certain time. They will put a note on your account so they don’t think your identity has been stolen.  Find out what your bank’s international ATM withdrawal limits (withdrawals per day, amount per day) and their fee to you for using an international ATM.  There is a place in the lobby to get large rubles broken down into smaller denominations for shopping.  I didn’t like using coins but the grocery stores and deli prefer it.  You can use a  credit card at the grocery store if you buy a lot of items.

SUPER IMPORTANT:

Find out from your bank if they charge an international transaction fee for when you transfer money to the hospital from your US account.  Some banks charge 10% – that’s $4,000 !!! Also, the hotel bill, if it’s held with your credit or debit card, is there a bank fee for that?  Again, we found it was going to be 10%. Some banks have no fee.  Check it out!!  We began drawing cash out of the ATM each day so we could pay the hotel bill in cash and not incur the 10% fee.  Banks vary GREATLY.  To avoid any fees when paying the hotel bill, pay for the entire balance in cash (rubles).

Language:

This was definitely the most difficult part of the trip – but manageable.  The most important Russian word you must learn is Thank You (pronounced “spuh-see-buh” in Russian).  Here, again, your translation APP is invaluable, unless you’ve been more adept than I, and have learned the key Russian phrases.  If you want to know the price of something just ask “rubles ?”.  Charades work sometimes.  Very few people speak English, some say they do but they don’t.  If you order room service first ask “English ?” And they will put someone on who speaks a little.

Hotel:

We stayed at the Best Western Vega Ru, the closest hotel to the hospital.  An important item I found out the hard way.  When you enter your hotel room you insert your room card/key in the device on the wall which turns on the power in your room.  Any time you leave, be sure to take that card with you or you won’t be able to get back in.  BUT if you leave a tablet or phone on the charger, this will turn the power to the charger off and it won’t be charging.  NOTE:  There is one electrical power strip that stays on at all times for the purpose of chargers.  It’s located beside the desk in most rooms.

Security:  Absolutely no concerns.  There is a guard at the bank of elevators who, until he’s familiar with you, will ask to see your sign-in paper that shows your room number.  When you get to your floor, your key will get you from the elevator bank and onto the floor to access  your room.  Each floor has a specific key so people cannot roam from floor to floor.  And finally you will use your key for the door to your room, once inside put it in the wall device to turn on the power and you’re good to go.

There are 3 TV stations in English.  They are primarily news shows and documentaries.  They are channels 20, 21, and 22.  Their news is quite refreshing – they actually report facts with no innuendo or interpretation thrown in.  It’s world news and you find out things are messed up everywhere, not just where you live. J

If you have trouble with WI-FI going down, there is a number for IT in the front of the Hotel Services book on the desk.  If they offer to move you to another room for better service, tell them you want the IT guy to check the new room to make sure service is OK there before you move.

This hotel, made my trip the positive experience it was.  It is as “Americanized” as possible and it made my life so much better.  All signs in the hotel also had English on them.

Food:

Always mindful that the bulk of our expenses were due to generous donations from friends and family, I tried to be as thrifty as possible.  After finding that on a daily basis I could not eat the hospital food (even though it was free, the cab ride each day added up) – I searched for a more cost-effective way.  The hotel has an extensive breakfast buffet from 7 to 11 every day.  It is 500 rubles – $ 16.00.  Pricey – but I ate there at 10:30 some days and never needed anything more the rest of the day except maybe a snack from the grocery store – cookies, crackers, cheese – etc.  It actually saved a lot of money and was excellent with a huge variety of choices.  All items were labeled with English also.

There is a mall, by the name of AST, within walking distance of the hotel – where there is a grocery store on the ground floor.  I bought cheese and crackers there, as well as chocolate and cookies.  KFC is on the 3rd floor. The prices are low compared to US.  There is a deli very close to the hotel – open 24 hrs. per day – got my Coca-Cola there…cheaper than the hotel.  A restaurant Brooke and I went to that was excellent is located beside the hotel (exit the front entrance of the hotel and make a right, then head across the plaza.  It is straight ahead.  It will say Pectopah on the left and – Sole Mio in the center and has a sunrise graphic.  It has all kinds of wonderful, fresh food, prepared from scratch while you wait, and they have Italian pizza (take out if you like) that is to die for.  All restaurants have menus with English translations on them.  At KFC you can ask for the English menu and point to what you want.  There are 3 restaurants in the hotel.  They’re a la carte so it can get expensive but portions are large.  Anything like ketchup, sour cream, mustard, etc. you must ask for and pay extra.

Well, that’s about it.  There’s a lot more but these are the basics.  Don’t forget my offer to help you along the way- anything from getting prepared to coming home with miracle results –   you will never be alone there.

IF YOU ARE A PATIENT TRAVELING ALONE:

The A.A. Maximov Hospital, Moscow, is the perfect facility to accommodate patients traveling alone.  You will be taken care of from your admission to the hospital until your departure.  DO NOT be concerned that you are traveling alone.  It is a non-issue.

Tips:

–  Make certain that, if you need it, you arrange for a wheelchair at the airport of your departure and at your airport of arrival in Moscow.

–  A bellhop (they are not on duty until 8 a.m.) will be available at the hotel to transport your luggage to your room.  If you call the front desk when you are ready to head to the hospital, they will also arrange for your baggage to be taken to the lobby.

–  Contact the Concierge ahead of time (night before) to arrange for your taxi from the hotel to the hospital.  That way, it will be ready for you and on time.  Make sure that you have the name, address and phone number of the hospital (in Russian) with you to show to the taxi driver.  Dr. Fedorenko supplies this to you via e-mail.  If he hasn’t yet, contact him closer to your date of admission.  Here’s a copy in case you need it in a pinch:

Москва, Ул Нижняя Первомайская 70, Национальный медико-хирургический центр им. Пирогова

Клиника гематологии и клеточной терапии им. Максимова

Федоренко Денис Анатольевич Моб +7-915-290-00-67

–  If you have a free day or so before your admission, and if you haven’t already brought them with you, try to get out to a deli or grocery store to stock up on any snacks you might want while hospitalized.  Salt, pepper and cinnamon are must-have items, as well as any other condiment that you prefer (ketchup, mustard, etc.).

PS:  I have tailored this to the US audience as far as money – I’m not familiar with pounds or Euros – but I am aware that HSCT patients are headed to Moscow from all across the globe, so I hope you all find this information useful.

If you have any additional questions, please feel free to contact me at the e-mail address above, or Brooke on here or on Facebook.

Connie Taylor, aka Moscow Momma, mother of Brooke Slick who left her MS in Moscow

The original "Moscow Momma"!

The original “Moscow Momma”!

Call Me, Maybe…

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Call Me, Maybe…

My view for the last week as I blog at all hours of the night.

My view for the last week as I blog at all hours of the night.

It’s been almost six weeks since my arrival in Moscow, and, here, on the eve of my departure, it’s hard to believe what has taken place since that first day.  So many fears.  So many expectations.  So many hurdles to cross.  And, one by one, each mission was accomplished.  Not always easily, but, ultimately, seamlessly, accomplished.  Never, could I have predicted the lack of complications, absence of major discomfort, total lack of need for any kind of pain medication, or a transplantation day where I was up and out of bed within about 15 minutes or so, smiling and wondering where lunch was.   As much as a part of me wants to believe that it was fate and a guiding hand…and I do, I also know that it was the complete selflessness of Dr. Fedorenko and his staff that made every effort to make sure that every moment of every day that I was safe from harm, infection and undue risk, both medically, physically and psychologically.  My overall happiness was #1 on the list of the staff’s priorities.  As part of Dr. F’s parting pep talk, he said my mantra should be “Good attitude, good food and physical therapy!”.  He said that it is a “whole body experience” and that we are not just treating the disease but the entire person.  I really do love the way this man thinks.  He just gets its.

What can I expect from this point forward?  First, the ultimate goal has already been accomplished.  The MS has been halted, as was evidenced on my MRI, taken the day before my discharge.  I saw the films myself, and I can honestly say I’ve never seen anything quite like it.  At least not in the last 12 years or so.  The before and after pics (comparing my MRI done pre-testing week) were dramatically different.  From 10 enhancing brain lesions, to no enhancing brain lesions.  Even I’m impressed…GO BRAIN!!

What kind of reversal might I see and when?  The average turnaround time for reversal of symptoms to present themselves is two years, however, that could start happening soon after the initial 3-6 of months of initial healing, maybe even before.  Based on the documentation of other HSCTrs, symptom reversal kind of creeps up on you.  One day, you’ll find yourself being able to do something that  you haven’t been able to do in 3-4 years, and initially you won’t even notice and you’ll turn around and be…”Wait a minute!  Did I just do that?”  I will begin physical therapy approximately one month from now and have been blessed to be able to see a hematologist/oncologist in Pittsburgh, who specializes in transplantation, and will be monitoring my bloodwork to make certain that all of my levels are on par.  A large part of my recovery has nothing to do with the transplant and everything to do with recovering from the effects of chemotherapy.  It’s a serious drug and requires serious attention and time to recover from it.  Lots of napping, and healthy living are on my agenda.  Let’s not forget, I will also be having 3 additional infusions of Rituximab (the b-cell attacking drug) as a precautionary measure over the next year.  A small price to pay for piece of mind.  I must give fair warning, that I will be scarce during the next few months.  I have been instructed that I can feel free to venture into wide open spaces without a face mask, but, to avoid enclosed spaces that are heavily populated and to avoid anyone who is sick or have been exposed to someone who is, including colds, flu, etc.  The good news is, that way I will be able to keep my Sunday morning grocery shopping dates with my husband.  It’s a tradition of ours that I’m happy to keep.  My immune system is that of a newborn and I’m supposed to treat it as such.  My advice is, as much as I’d love to have everyone over for a big stem cell blowout party, I’m going to have to opt out.  Hence, the “Call me…maybe”.  If I don’t pick up, hopefully, I’m napping…strict orders!!  Though I will not be continuing to blog on the daily, I will try to maintain regular submissions as the weeks pass.  There’s no way I’m going to leave the cheerleading squad heard round’ the world high and dry.

CAN WE TALK ABOUT SHOPPING, NOW?

Let’s talk about what mom and I did today.  Months ago, when I was planning this trip, I, of course, Googled “Moscow” and “malls”, and came across the most architecturally fabulous mall I had ever seen right off of Red Square.  It was called GUM (pronounced “goom”…liked “groom”), and if there was any chance that I could see it, I was going to make every effort to do so.  That dream was realized today and there are pics below to prove it.  It did not disappoint and I was surprised to find that there were even shops where the average Joe could afford to pick up a special gift to take home to the States.

MY GUM COME TRUE!

Mom caught a glimpse of me from an upper floor.

Mom caught a glimpse of me from an upper floor.

GUM Mall, Moscow.

GUM Mall, Moscow.

GUM Mall, Moscow.

GUM Mall, Moscow.

GUM Mall, Moscow.

GUM Mall, Moscow.

The Ugg Strore.

The Ugg Strore.

GUM Mall, Moscow.

GUM Mall, Moscow.

For all of you Sex in the City fans...

For all of you Sex in the City fans…

GUM Mall, Moscow.

GUM Mall, Moscow.

The fountain where they were serving yummy ice cream.

The fountain where they were serving yummy ice cream.

Dramatic architecture.

Dramatic architecture.

Though many of the stores were high-end, there were many reasonably-priced stores as well.  There was even a Timberland store.

Though many of the stores were high-end, there were many reasonably-priced stores as well. There was even a Timberland store.

St. Basil's Cathedral on Red Square...from the taxi.

St. Basil’s Cathedral on Red Square…from the taxi.

Tomorrow morning, back to the United States, the Pennsylvania countryside and the mountain view that will help to heal my weary bones.  Don’t worry, I’ll be back on in a few days to let you know how it was navigating through the airports, etc.  In the meantime…

Peace, love and gratitude…from Moscow.

Wrap it Up…I’ll Take it!

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Wrap it Up…I’ll Take it!

What day is it?  What’s today’s date?  Is it June yet?  Most importantly…what time is it?  Because, it is STILL daylight outside!!  You’d think that once I was outside the confines of the hospital, I would have a much better grip on the minute details of day-to-day life…not so much.  I’m in a foreign country, different time zone, different sun time (it stays daylight until about 10:00 p.m. and starts getting daylight around 3:00 a.m.).  All the while, this chemo-battered body is trying to play catch up and keep up.  I must tell you, it takes careful planning and the willingness to be flexible (not my strong suit), but it can be done.  Yesterday, was a perfect example of that.  I had already enjoyed two days of rest and only short treks in and out of the hotel.  But, yesterday, I was on a mission to finally be able to safely navigate across the plaza, up and down many unrailed steps, and across the street to the mall that held most of the souvenirs that I had on my wish list of gifts for family members as well as a nice selection of scarves to feed my addiction, which now includes using those scarves (inset pic, top left) to cover my newly bald head.  Mom and I started out at 10:00 a.m., me promising myself, that it didn’t matter how long it took to cross the great divide, as long as I made it…and I did.  Once inside the mall, there were escalators and elevators that made navigation much simpler, but I’m convinced that they must have some kind of ban on benches in malls. because there are none.  This mall (AST Mall), though rather lackluster, was air-conditioned, 3 stories high and included a food court, complete with a KFC and plenty of tables for resting in between souvenir runs.  And, let’s not forget, one of the food vendors served fountain Cokes.  This food court served as my Pit Stop for the course of the day and was the perfect venue for this recovering HSCTr to reach all of retail therapy goals.  Well, after about 3 hours of shop, rest,  Coke, repeat, all of the boxes had been checked off my list and we had only one more thing left to do at this mall…a visit to the grocery store that mom had been going to for the last month.  It is in the bottom floor of the mall and has everything soup to nuts to liquor…lots and lots of liquor (see pics below).  We finally decide to make the trek back to the hotel.  As we leave, we realize that it’s raining outside and we have no umbrellas.  Rain has never felt so good on a body that felt like it was wilting from the humidity.  As soon as you exit the mall and cross over toward the hotel, you are met with obstacle after obstacle in the way of uneven surfaces and large stone steps.  So, one large stone step at a time we went.  You might be thinking by now “What’s the damn big deal about the uneven surfaces and the steps, Brooke?  Aren’t you all fixed now?”  “When you had your transplant, didn’t somebody wave some kind of magic wand and everything is 100%?”  Unfortunately, that’s not how this gig works.  For at least the first 3-6 months on average, your MS symptoms worsen before they begin to improve, and then an additional average of 2 years, possible up to 5 to see the maximum reversal/stabilization of symptoms.  That’s right.  You know that wobbly, off-base, limpy, foot-droppy Brooke you always see?  Well, turn her disability dial up about 4 notches, and that’s what we’re dealing with right now.  Is that going to stop me?  No.  But, it is going to slow me down, considerably, and it makes me have to be incredibly careful with every step that I take, so as to avoid a tumble that could lead to injury.  IMPORTANT!  Let us not forget, that the MS has been HALTED.  I simply need time to heal.

This was just the first half of the day.  We get back to the hotel, and I receive a message from my friend, Kristy Cruise, from Australia, who is also here in Moscow for her HSCT pre-testing.  She says that she’s done with all of her testing for the day, and that she’s going to see if the doctor will spring her from the hospital in order to have dinner out.  You see, yesterday was her birthday, she was half a world away from family and friends and alone in a hospital room.  There was just no way we were going to let that happen.  Several hours, a few tactical moves and one female Candy Crushing taxi driver later, and Special Agent Koala Bear, mom and I were sitting at the loungy, white and linen themed, couch-laden restaurant enjoying the best beef stroganoff and Tiramasu that I’ve ever had.  Kristy opted for ice cream in lieu of birthday cake.  When all was said and done, Kristy was securely delivered back to the hospital (after mom threatened the cab driver that he had to stay with her until the guards let her back into the hospital!), and it was around midnight when we made it back to our room and promptly collapsed onto our beds.  Today, we had an early breakfast at the buffet here in the hotel, and I plan on spending the remainder of the day resting, reading, napping, blogging and arranging my belongings for our departure on Friday.  On tomorrow’s agenda?  Red Square, and the GUM Mall.  This mall is as much about the architecture as it is about the shopping and I can’t wait to see it.  In the meantime, here are some pics from yesterday’s adventure.

SHOP, BUT DON’T DROP!!

STEPS!

STEPS!

STEPS!

STEPS!

Me sitting at the base of the steps!

Me sitting at the base of the steps!

AST Mall

AST Mall

AST Mall

AST Mall

AST Mall

AST Mall

AST Mall

AST Mall

The Food Court at the AST Mall.

The Food Court at the AST Mall.

The grocery store at the AST Mall.

The grocery store at the AST Mall.

Bottoms up! At the grocery store.

Bottoms up! At the grocery store.

More grocery store.

More grocery store.

IT’S TIME FOR A BIRTHDAY PARTY!!

Our birthday dinner table.

Our birthday dinner table.

The inside portion of the restaurant.

The inside portion of the restaurant.

The beautiful birthday girl!

The beautiful birthday girl!

Kristy's birthday ice cream.

Kristy’s birthday ice cream.

My Tiramasu.  Best ever!

My Tiramasu. Best ever!

Stuffed!

Stuffed!

A too quick goodbye to a very long day.

A too quick goodbye to a very long day.

Another day down, and two days until we lift off for the States.

Peace, love and scarves…from Moscow.

Sign, Sealed, Delivered…

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Sign, Sealed, Delivered…

As much as you all may have thought that this trip was supposed to have been all about me, saving myself from my MS, what you may not have known, is that it’s always been about a whole lot more to me.  I knew that living and blogging this experience in real-time may be the one and only chance for me to directly touch the lives of others who are having or considering having HSCT for HALT their MS as well.  It’s a mission that has kept me focused during my treatment and has served as a soulful reminder of this rare opportunity that I have.  Lucky for me, today, I had an up close and personal opportunity to assist a friend and fellow HSCTr, Kristy Cruise’s, cohesive entry into Pirogov Hospital for her pre-testing.   That first day there is full of so many unknowns, and being able to be help to make that as comfortable for her as possible was truly a labor of love.  I’ve even already had the opportunity to identify some of the food she’s been served .  She sent me the distress picture early after lunch with the “What do you think this is?” tagline.  Of course, I let her know that it was a chicken croquette and they were quite tasty.  ha ha    I have included a couple of pics of us right before we left the hotel for hospital.

About to head to the hospital.

About to head to the hospital.

Delivering Special Agent Koala Bear to the hospital for pre-testing.

Delivering Special Agent Koala Bear to the hospital for pre-testing.

With Kristy successfully placed, and her already being ushered off for testing, Dr. Fedorenko had requested a 3-day post-discharge exam and consult.  I passed  with flying colors and he proceeded to continue to warn me that I would be suffering from the side effects of chemo for at least 3-6 months.  So far, my main side effects from that have been dizziness and fatigue quelled only by periodic naps.  He reminded me that I only had to wear a mask in a crowded situation, such as the plane ride home or an enclosed space with  groups of people.  I was a little surprised when he said that I would not be able to go swimming until the last week of June, due to potential exposure to bacteria in pool water.  That was just fine with me.  I usually don’t get in until the first week of July, anyway.  One very pleasant tidbit of information was that he said there was no reason why I couldn’t drink wine.  Really?  I mean, REALLY?!!  I do love the occasional glass of very dry red, and, as summer is upon us, the thought of a crispy Reisling on the patio in the evening makes me shiver with excitement.   For some reason, I had just assumed that it might be at least 6 months until I was able to partake.  Who knew?!  He also said that I can begin driving, as soon as I feel comfortable doing so…perfect!

Dr. Fedorenko and I said our goodbyes and I headed back to hotel to meet with mom.  Our goal for the day was to try to get me to the mall across from the hotel.   Whether it took 15 minutes or an hour, I was determined to get there.  We opted to wait until later in the afternoon for the temps to cool down a bit and we headed out across the plaza, down two sets of long stairs, through a parking lot, and just as we were about to cross the street to the mall, I realized that #1, I was already exhausted from getting up early, #2, my feet were sore from yesterday’s trip to the Market and, #3, that the 2 or so hours that I had intended on spending in that mall were more likely to be an unproductive 1/2 hour.  I was close enough to reach out and touch it (see pic), but, I know when to cut my losses, and tomorrow is another free day for us.

So close...yet so far.  Not a happy camper.

So close…yet so far. Not a happy camper.

We opted to head back to this cozy little restaurant we’d wanted to try out that is right outside the hotel, and we would give the mall another try bright and early tomorrow morning when this Energizer Bunny’s batteries were fully charged.   Below are a couple of pics from the restaurant called Sole Mio.  The food was fantastic, the prices were reasonable and the service was impeccable.

This lovely little restaurant, Sole Mio, also has fab takeout pizza. Pectopah, means "restaurant".

This lovely little restaurant, Sole Mio, also has fab takeout pizza.  Pectopah, means “restaurant”.

Cheese balls with ham and melted cheese inside.  Delish.  Love the presentation!

Cheese balls with ham and melted cheese inside. Delish. Love the presentation!

The restaurant, Sole Mio!

The restaurant, Sole Mio!

Mom and I enjoying a little Coke before dinner.

Mom and I enjoying a little Coke before dinner.

So, yet another productive day in Moscow as I continue to build strength while trying to incorporate an appropriate amount of rest.  It’s a challenge for me, but well worth the sacrifice.  Tune in tomorrow, at a time unknown to see what kind of trouble mom and I might be getting into.  As the week progresses, I will be addressing what I can expect upon my return to the states in the way of recovery, reversal, and all around expectations of myself and my plans for rehabilitation.  This, my friends, is just the first leg of the race.  And many miles to go…

Peace, love and cheese balls from Moscow.

Tip Toe Through the Tulips…

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Tip Toe Through the Tulips…

Today, was my “challenge” day.  The day, that, no matter what, I promised myself that I was going to attempt to step outside of this hotel, across the street, down a long set of stairs, though a large parking lot and into the Izmaylova Market which is situated adjacent the hotel.  This Market is one of most popular outdoor markets in Moscow and provides one-stop shopping for souvenir-seeking tourists.  From fur hats, to nesting dolls, jewelry to pottery, this is the place to go for best finds and bargains.  For my entire month in the hospital, I’ve been watching from a distance as my mother has memorized every inch of this Market and befriended most of the vendors.   Today, she was going to be my houndog, and as we soon found out, would be a shoulder to place my hand on, as my dizziness, though it has decreased very slightly, refuses to relent.  But, did you really think that was going stop me from the art of the deal?  I knew that as long as I took it slow and didn’t over-exert, that there would be no harm done…kinda.

It was a beautiful, crisp, windy day and 70 degrees.  I made it the entire way to the Market and did manage to “tip toe” over many an uneven surface and curb to cut through to many of the vendors.  We decided that we were going to rest for a while and enjoy my fave…an icy cold Coke.  Just about that time, my fellow HSCTr, Kristy Cruise appears ready to find a few bargains of her own.  And we did!  (pic below)

Kristy &  me, Moving Mountains for her MS in Izmaylova Market, Moscow.

Kristy & me, Moving Mountains for her MS in Izmaylova Market, Moscow.

The market was bustling with tourists, and I had to watch every single step, so as not to stumble.  My legs are still very weak, and a tumble could have happened in a split second.  But, it didn’t.  I had nowhere to be, no timeframe, and absolutely no desire to leave there without exactly what I wanted.  I could sit in the hotel room the rest of the week and rest, but, I’ve been “resting” for month.  By the time that we made it back to the hotel, I could barely lift my right leg even to clear the ground.  I literally hobbled into the hotel lobby as Mom and Kristy poured me into the elevator and deposited me on the edge of the bed in our room.  MISSION ACCOMPLISHED!  Will I be attempting the same feat tomorrow?  No, I will not.  Actually, early tomorrow morning, I will be accompanying Kristy to the hospital so that she can be admitted for her pre-testing.  It’s quite a maze of guard gates, tunnels, administrative office, etc., and I have been instructed exactly where to take her by Dr. Fedorenko.  In addition, he will be supplying me with all my medical records to take back to the States.  One last goodbye to the doctor who facilitated my future of freedom.

After leaving the hospital tomorrow, I will be resting and relaxing at the hotel, most likely eating at the hotel restaurants for the convenience of it.  The restaurants in the hotel provide a wide range of menu choices, menus in English and prices to suit even the smallest budget.

Though my thigh muscles feel like they’ve been beaten by a meat clever, it’s a good kind of pain.  Those muscles haven’t been used in so long, and they needed a good kickstart.  I will leave  you with a bunch of fun pics from the Izmaylova Market.  Seriously…who doesn’t like to go shopping?

On the way to the Market.   Wine!!!

On the way to the Market. Wine!!!

Our favorte pizza place!!

Our favorte pizza place!!

Outside of Izmaylova Market.

Outside of Izmaylova Market.

Lots of fur hats, scarves and headbands.

Our Coke break venue.

Beautiful Turkish and Polish pottery.

Nesting dolls.

The hustle and bustle of tourists.

Pillow Palooza!

One of my purchases.  A Turkish platter.

One of my purchases. A Turkish platter.

My first Russian scarf purchase (linen).  Will it be the last?  Hmmm.

My first Russian scarf purchase (linen). Will it be the last? Hmmm.

Peace, love and retail therapy…from Moscow!

I’ll Put One Foot In Front of the Other…

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I’ll Put One Foot In Front of the Other…

After a day of rest at the hotel, today, was to be a day where I try out my sea legs to see how much or how little endurance I may have.  One month of isolation in a hospital, does not lend itself to muscle strengthening, and I knew that, but, WOW, I definitely underestimated the amount of atrophy that can take place in such a short amount of time.  Just the act of getting a normal, everyday, full-length shower and getting dressed almost completely wiped me out.  Normally, I’m able to push through the fatigue. but, when you couple that with the dizziness/edginess that comes with recovering from chemo and being on a steroid (that always makes me feel like death!) and I knew it was not going at what I consider to be a “productive” day.

Last night, my friend, Kristy Cruise, of Australia, arrived in preparation for her HSCT pre-testing which will begin on Monday.  She, mom and I had agreed  to meet for the hotel’s breakfast buffet, and I really was looking forward to it.  First obstacle?  There is no elevator to the 3rd floor restaurant.  Every other floor has access to an elevator, but not that one.  Mom had already been up the stair case several times and knew that it would be a bit of challenge for me, but I could do it.  Mom opted to get me safely up the stairs (see pic), literally, one step at a time and to the restaurant and she would meet with Kristy and return.

Stairs to the restaurant in the hotel.

Stairs to the restaurant in the hotel.

We had a lovely breakfast (see pics) and chat, and it was decided that even though I fully intended to go the flea market for a short stretch, that it wouldn’t be very wise to do so, just yet.

More restaurant.

More restaurant.

To restaurant.

To restaurant.

Restaurant entrance.

Restaurant entrance.

One of the many restaurants at Best Western Vega Ru

One of the many restaurants at Best Western Vega Ru

Speical Agent Koala Bear, reporting for breakfast.

Special Agent Koala Bear, reporting for breakfast.

Mom and Kristy proceeded over to Izmaylova Market for a very productive couple of hours of souvenir shopping, site-seeing and photo ops.  I will admit, I took one of the most peaceful naps that I’ve had the entire time I’ve been here.  Wise choice, Brooke.  Slow and easy.  Earlier, Kristy had graciously gifted me with one her Moving Mountains t-shirts and a few trinkets.  One of my fave “trinkets” was a container of Tim Tams from down under.  They are kind of a chocolately, toffee wafer type of cookie that are to die for.  But, last, but, not least, was a very thoughtful “Ninja” charm (see pic) that she picked up on her way through Japan this week.  It is to remind me of the brave “Ninja”, Amy Peterson, whom, had she not blogged her HSCT experience here, I wouldn’t be here right now and about to venture on a life free of the constraints of MS.

Pink "Ninja" charm.

Pink “Ninja” charm.

Below are a couple of pics of me and Kristy in our room.  Just a couple of members of the Sisterhood, hanging out.

Me, Kristy and one of her Moving Mountains t-shirts.

Me, Kristy and one of her Moving Mountains t-shirts.

Sisterhood!

Sisterhood!

So, my first whole day on the outside.  Was it everything I had hoped?  It was spent with friends and family.  There were laughs, and tons of food and naps. and, as it should be, the healing of me has just begun.  For this “Impatient Penny”, it’s not an easy task to hold back, but days like these, no matter how limited are precious to me because my life of fear is waning and a life of living awaits.  Well worth the wait, if I do say so.Peace, love and naps, from Moscow.  🙂

The Sweetest Goodbye…

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The Sweetest Goodbye…

How do you say goodbye to the people who just dedicated a month of their lives to saving yours?  You take a deep breath, put on a smile and document your appreciation in pictures.  Dr. Fedorenko always said that “We are a team!”  I think that is evident in these pics.  Take a look at the events that unfolded before my departure, today.

Me & Dr. Fedorenko

Me & Dr. Fedorenko

Just a little excited!

Just a little excited!

Me, Mom & Dr. Fedorenko...HALTING MS!!!

Me, Mom & Dr. Fedorenko…HALTING MS!!!

Me with our favorite food staffer that we nicknamed "Bon Appetit" because that's what she says every time she serves your food.  She was so sweet.

Me with our favorite food staffer that we nicknamed “Bon Appetit” because that’s what she says every time she serves your food. She was so sweet.

One of the cleaning staff who was always practicing her English.

One of the cleaning staff who was always practicing her English.

The beautiful Galena.  Chemo nurse. Aspheresis nurse. Transplantation nurse.  Two-handed fist-pump nurse. Friend.

The beautiful Galena. Chemo nurse. Aspheresis nurse. Transplantation nurse. Two-handed fist-pump nurse. Friend.

A shout out to the Moscow Momma!

A shout out to the Moscow Momma!

Just waiting on a cab, and a new future.

Just waiting on a cab, and a new future.

On this particular morning, there were no blood draws, no IV drips, no temperature checks.  There was one unexpected prednisone injection that is meant to bolster me over the next 72 hours.  Other than that, just a lot of reflection.  Mom and I are now hunkered down in our room at the hotel, where each day, I will try to venture out bit by bit.  I am still very dizzy and unbalanced, not to mention jittery from the steroid.  But, I am at peace and content to gaze out the window at the view of the Izmaylova Market that is calling my name…in time.  I will be continuing to blog for the remainder of our stay here, which will be until next Friday.  Expect those posts to include some input from my Mom on surviving/supporting as a guest/companion of an HSCT patient while here in Moscow.  She has it down to a science, and wants to show all of those other Moscow Mommas how it’s done.  In addition, I’m hoping to be able to share some pics of this great city.  Why shouldn’t you all have some fun coming along, too!

I Can See Clearly Now, the Rain is Gone…

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I Can See Clearly Now, the Rain is Gone…

VERY BIG, UNEXPECTED NEWS, TODAY!!

It’s a gloriously sunny day today with a high of 75 expected and the climate within my room has also hit a fever pitch.  I arose early,  knowing that today would be filled with lots of “lasts”.  IV drips, blood draws, bloodwork results, and, finally, the big one…MY CATH LINE WOULD BE REMOVED.  Of course, they never tell  you exactly when, other than “before lunch” or “after lunch”.   BTW…I quickly recovered overnight from yesterdays’s semi-sedated stupor of an infusion.

In addition to my cath line being removed, yesterday, Dr. Fedorenko informed me that, based on the fact that I had so many enhancing lesions when I arrived here…10 to be exact, and the fact that my MS had never responded to any immunomodulating (MS) drugs in the past (10% don’t), that he was going to do something a bit out of the ordinary and order another MRI of the brain, today, to see how those 10 lovely lesions responded to chemo.  He also said that he wanted to be able to document it for their records, a patient with highly drug-resistant MS and its response  to HSCT.  Off I go flying through the underground tunnels and over to the MRI department and back to my room by 10:30 a.m.  Dr. Fedorenko just left my room after a long, serious, uplifting and promising discussion.    He said that he had “very good news” and proceeded to say that “NONE, of the the 10 lesions enhanced.”!!  Not a single one and that my MS had been “Halted”.  I proceeded to ask him what that could possibly mean for me in the way of potential reversal of symptoms.  For future HSCTrs out there, you know that this is the one time in your MS life that you WANT to have enhancing lesions when you begin treatment, because that still means that there is potential function (like we saw when I first started chemo and started seeing some small improvements).  He said that it was the best case scenario that I could have hoped for and that I should see optimal results with regard to improvement.  This is the very thing that I have disallowed myself to hope, dream, wish for.  That would have been selfish.  Halting the disease would have to be enough, and I was 100% down with that.  That still would have meant that, for once in 12 years that I controlled the MS and not the other way around.  So, what was meant to be a day of lasts, also began a day of firsts.  My first MRI in nearly 12 years that didn’t have some type of enhancing lesion.  The first day that I can begin to think “In a year or two, maybe I could do X”.  The first day to really accept that I could be living an MS-free life.  It’s a lot to bite off, and it’s going to take some adjusting on  my part.  Fear has been the undertone of my life for so long, that letting go of that fear may not be quite as easy as you’d think.  I WILL OVERCOME.  I HAVE OVERCOME.  I knew I said I wouldn’t say it, but “PRAISE, JESUS!!”.  🙂

MORE ON THAT CATH REMOVAL!

I was under the impression that the subclavian catheter line that was inserted over two weeks ago, would be removed in the same mini-surgical center where it was placed.  Gilenna, one of the head nurses, taps on my door at around 12 noon, peeks in and points to my shoulder/chest area, motioning as if to say “Are you ready to have that removed?”  I was nodded YES!!!  The thought of an unobstructed shower was floating through my brain.  So, she nods and takes off down the hall toward the surgical center, and I follow behind.  She turns around and says “Nyet, nyet.”  and waves me back to my room.  I’m like, they must not be ready for me yet.  She then comes to my room with a little packet of goodies to removed the cath line, right there in my room.  Cool.  She has me lie on my back, takes off the bandages, makes two little snips to remove the stitches that had been holding the cath line in place (I didn’t feel a thing), and she squeaks  out “Duh! (yes)”.  I open my eyes, and there she is holding the cath line in her hand and beaming from ear to ear.  I felt absolutely NOTHIING.  SWEET!  Below is a pic of what has become my very best friend over these 2+ weeks.  Never a pin prick.  Never a missed vein.  Never a bruise.

My subclavian cathether line.  My new BFF!

My subclavian cathether line.  An HSCT patient’s best friend.

Here I am, on what will be the last night of my stay in this top-notch facility.  I am sad to say goodbye to the staff.  I am excited to say hello to room service and maybe a little souvenir shopping.  There could not have been a better outcome for me here.  How often does that happen…right across the board?  Humble doesn’t really cover it.  All I can say to any of you considering  your HSCT in Moscow, is that you will NEVER regret making that choice.

Peace, love and healing…from Moscow.

The Sun Will Come Out…Tomorrow

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The Sun Will Come Out…Tomorrow

What started out as the most idyllic day, despite the thunder, lightning, dark skies and rain, turned quickly when a surprise visit from Dr. Fedorenko came with the announcement that I would be getting my 5-hour Rituximab infusion today, instead of tomorrow, so that he could have one more day to monitor me after having the infusion.  Side effects are common and he wants to make sure that I’m all ready to check out on Friday, safe and sound.

It certainly sounded simple enough.  Lord knows I’ve had so many IV meds every day throughout the day, you’d think there would be not trick to this MacDaddy of a drug.  This is the drug that will keep my B-cells in check in case they decide to pop out and start playing “chicken” with my re-booted immune system.  It’s not likely to happen, but each of Dr. Fedorenko’s patients receives a precautionary dose shortly before their check-out date.   I, on the other hand, will receive three more doses back in the U.S. based on the history of MS not responding to four other drugs.  It’s a better safe than sorry scenario and could be done reactively.  We have chosen to do it proactively.

Here’s the WebMD description of Rituximab:  Rituximab is used alone or with other medications to treat certain types of cancer (e.g., non-Hodgkin’s lymphoma) and autoimmune diseases. It is a type of medication called a monoclonal antibody. It works by attaching to certain blood cells from your immune system (B cells) and killing them. It is also used with other monoclonal antibodies and radioactive drugs to treat certain cancers.

Side Effects of Rituximab:  Headache, fever, chills, nausea, heartburn, flushing, weakness, or dizziness may occur. If any of these effects persist or worsen, contact your doctor or pharmacist promptly.

When getting these infusions done, it all about monitoring the side effects.  In preparation for that, they pre-treat you with an IV bottle of prednisone and antihistamine.  I’m a total lightweight when it comes to any drugs that will make you sleepy, groggy,  or in this case, downright incoherent and unfocused.   Two minutes in, the nurse shoots the antihistamine into my line and within seconds I’m heading south.   The prednisone already had my eyes jumping all over the place and as much as I’d like to maneuver from one side of the room to the other (about 6 ft), it looks like a bowling alley and I opt to lean back.  Mom had already planned on coming over.  We were going to take my first walk outside since isolation and just chill out.  Well, my infusion status changed while she was on the way and by the time she got here, I was in less than Susie Sunshine  mode.  You see, Susie Sunshine is a control freak and she doesn’t like not having a grasp on every single mental and physical task of her day.  If I remember correctly, Susie may have even been whining.  Damn, Susie….SNAP OUT OF IT!

Mom was here about an hour, and when she quickly realized that I was out of my element, she opted to head out early and I spent the next 3 hours in a reclining slumber, only to be woken up  by Dr. F. to say “Only 2 more hours”.  Are you kidding me?   Well, the two hours came and went and dinner was served.  Dinner that looked just like breakfast.  It was oatmeal.  OATMEAL!!!???   I ate a small portion of it, smothered in sugar and cinnamon, at the two pieces of bread and called it a meager meal.  I know I have a bag of M&Ms around her somewhere.

To summarize…I had ONE sucky day…out of an entire month of what could have been pure hell, but never was.    This is just me, letting  you know that I’m human.  Sitting here super dizzy, eyes glassy and unable to focus  and having to re-type every word twice because I can’t feel my fingers…and, hungry.  It’s time to give myself permission to hit the wall…just this once.

Ironically, when Dr. Fedorenko entered my room this morning and it was storming so badly, I pointed to the window and said “You see, even though it looks like that out there, the sun is always shining in Brooke’s room!”  He got a kick out of that.  Either way, I’m sure, the sun will come out tomorrow..

Peace, love and steroids, from Moscow.

We are Never, Ever, Ever, Getting Back Together…

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We are Never, Ever, Ever, Getting Back Together…

Today is a monumental day in my HSCT quest to free myself of MS.  Dr. Fedorenko has been waiting for the last three day’s bloodwork results to come in to finally tell me the words that I’ve been waiting to hear for all of these weeks.  The reason that I came here, and the reason why I will leave here with a new lease on life and without the burden of living with further progression of my MS.

His words, exactly, “Your immune system has been officially re-booted!”  He said that is the universal term used with regard to HSCT…REBOOT!  He, of course, tells me this with that gleam in his eye, and, with that unending enthusiasm of his that I think may actually rival my own.  He said to me from the beginning that “we are a team”.  Well, the team won big today.  We hit it right over the fence!

It is very important for me to explain exactly what has taken place here, and it is equally as important to Dr. Fedorenko that I relay the information in the most accurate way.  We spoke at length before I made this post.  For the piece and mind of my family and friends, as well as the families and friends of those who are either scheduled to undergo HSCT or in the planning process, it is important to know exactly what will be taking place with their immune systems.  Since making the decision to have HSCT, I have had a full understanding of how this works.  I will do my best to explain it without suffocating you with medical terminology.

Dr. Fedorenko said that there is no “old” and “new” immune system.  It will always be the same immune system.  However, it will have been “re-booted”.  Meaning that it has been functionally dismantled by chemo and re-built with a new foundation (with the assistance of my stem cells) wherein your MS is permanently in “functional remission”.  He said that my immune system will always have a memory of MS.  But, it will not have the ability to react.  I will always test positive for MS, however, it will be non-functioning and non-progressive. It will be HALTED!  The very core of my immune system has all but been expunged.  Only a skiff of my immune system remains, and that is the area that contains any prior vaccinations that I may have had.  In a later post, I will discuss where we go from here and what I can expect with regard to recovery and restoration of function.

This is the part where I sit here humbled and overwhelmed.  This is the part where my mind scans chronologically back through the last four weeks and every pain-staking move that I needed to endure to make this happen.  THIS IS THE PART WHERE MY DANCE WITH THE DEVIL ENDS.

Peace and love from Moscow.

Ain’t No Lie, Baby, Bye, Bye, Bye…

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Ain’t No Lie, Baby, Bye, Bye, Bye…

There are many milestones that an HSCT patient will reach during their stay in Moscow, or any other facility for that matter.  But, one of the more prominent in my mind, and maybe it’s because I’m a woman, is the loss of hair due to chemo.  That’s right, there’s no avoiding it.  Nobody gets a check out free card that will save themselves from certain  hair loss due to the four days of high-dose chemo that’s administered prior to transplantation.  If you don’t receive chemo, you don’t kill the T-cells where the MS resides.  No chemo, no curative effect.  If you haven’t figured it out by now, the chemo is the real hero in this entire process.  Without it, the transplantation would be moot.

So,  you have your four, kick-ass days of chemo, you rest a day (there has to be a 24-hour period without it before transplantation), you have your transplant, then you wait, while in isolation, for the “cumulative effects” of the chemo that Dr. Fedorenko warned you about.    The ones that I didn’t suffer from at all, until after I engrafted and came out of isolation two days ago.  The ones that keep me from being able to keep my eyes open, yet, when I close them, I can only sleep peacefully for two-ish hours at a time.  Not to  mention the dizziness, overall weakness and worsening of MS symptoms…DON’T WORRY!!  IT’S ALL TEMPORARY.  3-6 months TEMPORARY!  That sounds like an awfully long temporary for this impatient puppy.  But, I’ve waited 13 years to rid myself of this monster, I suppose I’d look pretty lame if I couldn’t suck it up for another few months or so.  You can bring me my straw and that tall glass of “suck it up” and I’ll get right on it.

LET’S GET BACK TO THE HAIR!!!

5 days post chemo, I hadn’t lost one shred of hair.  Three days ago, I went into the bathroom, thought I’d give a little tug to some strands and within 20 minutes and with no resistance, all of the hair on my head, except for a baby fine layer of blonde had filled the entire sink.  I looked at it in horror…and amusement.  You see, MS has taken a lot from me over the last 13 years.  Too many things to count, and if I did, it could send me reeling over the edge.  My  hair, was the last thing it will take from me.  HERE, MS!  COME AND GET IT YIPPY KI-AY, MOFO!   I warned you I swear like a trucker.  But, this little slip of the tongue feels DAMN GOOD.  You killed my hair, and I killed you.  Sounds fair enough to me!

So, what’s a girl to do?  I end up looking like death warmed over and the doc suggests that I wait a couple of  days until my platelets come up to shave my head.   He said it will fall out, anyway…No it didn’t.  Yesterday, he gave me permission to shave it, and last evening, one of the sweet nurses came in and did it for me.  Although I was initially psyched to have it done, I was getting a little worried that I might start tearing up or something.  HELL, NO!   I took one look, pumped my fists in the air and proclaimed “I’m free!  I’m free!”  It was a good moment (pics below).

Ain't no lie. Baby, bye, bye, bye!

Ain’t no lie. Baby, bye, bye, bye!

A shiny side-shot!

A shiny side-shot!

I couldn't resist this bald-headed Charlie Brown cartoon.  Crack me up!

I couldn’t resist this bald-headed Charlie Brown cartoon. Crack me up!

MY NUMBERS ARE IN!

Leukocytes – 31  Platelets – 73  Hemoglobin – 112

SIDENOTETODAY IS MY HUSBAND’S 45TH BIRTHDAY!  This year, I’m giving him his wife back…MS free.  Not exactly sure how I’m going to top that next year.  🙂  Happy Memorial Day to all of my U.S. peeps!!

We Are Family. I’ve Got All My Sisters with Me…

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We Are Family.  I’ve Got All My Sisters with Me…

Today is Sunday.  A very quiet and uneventful day here at the hospital.  I plan on taking the opportunity to do a sidestep with my blog, to let you know what’s been going on behind the scenes of this adventure.   Because the adventure doesn’t stop here.  It’s going on across the U.S. and beyond, and it includes my sisters.

Over the past few months, as my trip has unfolded, I have had the opportunity to connect with a group of like-minded woman, who are also seeking to have stem cell transplantation (HSCT) for their MS.  In the beginning, most of them where still searching for just the right facility to have their HSCT.  It’s available in Germany, India, Israel, Chicago, etc..  Each of those facilities has its own set of criteria for acceptance, and every patient’s story is different, so any of these women could have ended up anywhere, but, they didn’t.  They are ALL coming to Moscow.

There are nine of us, who have now created an informal group amongst ourselves called Sisterhood of the Fedorenko Alliance (SOFA) in honor of Dr. Fedorenko, our oncologist/hematologist, guide, and protector.  Three of us have already completed our HSCT here, I am still in the process, and there are four more to follow this Summer and Fall.  In addition, there are four more potential candidates waiting in the wings as all of the pieces to their puzzles come together.  Our goal is to remain in touch throughout the rest of our MS-free lives.  This unique HSCT bond cannot be duplicated with a non-HSCTr.  Thanks to technology, we feel very strongly that we will be able to maintain it.  Here is a list of our fearless members from all over the planet:

Amy Peterson, Texas, Trailblazer

Phoebe Scopes, England, Trailblazer

Tammy Reichert, Washington

Brooke Slick, Pennsylvania

Linda Stallings, Oklahoma

Vicki Wilson, Florida

Kristy Cruise, Australia

Jane Stratton, California

Sheli Godbold Smith, Texas

Our intent is to empower each other through the sharing of experiences, including tips and tricks to navigating this crazy HSCT war we are waging.  It’s not that easy sometimes.  There can never be too many shoulders to cry on or ears to bend.  Our ages range from 30s to late 50s.  We represent a wide range of career paths, geographic paths, and familial paths.  However, our war paths are identical.  That path leads to a life/future free of MS.  I must add that this group of ladies is a HOOT!  We all know that it takes one heck of a sense of humor to live with MS and we thrive on each other’s comical banter.

I’m going to give you a perfect example of the importance of this group in my life and the members who belong to it:

This morning, at 3:00 a.m (yes, I was up!),  I had the perfect opportunity to step up to the plate for one my sisters. I received a private message from Kristy Cruise, aka Secret Agent Koala Bear (she’s from the Gold Goast of Australia-check out her pic below)  saying that the pre-arranged plans that she had for lodging, in-town transportation and site-seeing had unexpectedly fallen through and would I mind if she borrowed my mom to show her the ropes for the three days before she was admitted to the hospital.   What she didn’t know, was that I was being released a day early, and would be at the hotel when she arrived.  What I knew, was that this secret agent would be enduring, alone, a 19-hour flight from the east coast of Australia, through Dubai, and on to Moscow.  Add to that, I knew she was crushed by having to leave her young sons 2 and 5 behind with her family.  We all have made sacrifices to make it here, and not all of them are financial.  It was apparent that this Koala was going to need some “sister” love.

Special Agent Koala Bear and her cubs.  She's "Moving Mountains" to be MS-free.

Special Agent Koala Bear and her cubs. She’s “Moving Mountains” to be MS-free.  Click to take a look.

I shot off  a “Code Red” message to mom, knowing that she would get it when she woke up, and “Operation Save a Sister” was put into motion.  We decided that we would meet with her for dinner on Friday (if she can keep her eyes open), then we will take her with us to the Izmaylova Market on Saturday and possibly Red Square on Sunday.  All of this contingent upon my physical capabilities.  Then, and most importantly, we will take her via taxi to the hospital for her admission on Monday, get her through the security gates (They all know mom.  They call her “English”) and make sure that she is delivered safe and sound to Dr. Fedorenko.  We were graced with this opportunity when Jeff Root’s wife did the same for us and it made the experience a lot less daunting.

So there you have it.   We will be there for each other through thick and thin as we trample down this road, machete in hand.  WE ARE FIERCE!  FEAR US!

TODAY’S STATS!

LEUKOCYTES – 28 = ENGRAFTMENT

PLATELETS – 64 = ENGRAFTMENT

IT’S TIME TO PUT THOSE TURBINES TO WORK!

What a Feeling! Being’s Believing…

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What a Feeling!  Being’s Believing…

Don’t you love the way I date myself with the Irene Cara music?  We all boogied to it.  You know you did!

It  just so happens that today it is a very fitting title to describe  how my day began, as glimmers of neurologic improvement continue to sprout in this MS-worn body of mine.

I was up bright and early, around 5:45 a.m.  I get up and start moving around (yes, still dizzy from the chemo…slow her down, Brooke).  I pick out my clothes, I take some meds, I have my supplemental protein drink, and all the while I’m thinking that I must have really been sweating last night, because my pajama pants (see pic below) seem so damp down the fronts of the legs.  Well, first of all, my legs never sweat, and second of all, I had not sweating issues at all last night.  I keep moving, still trying to figure out why my pants are so cold.  I finally just reach down to feel them, and they are dry as a bone!  Well, well, well…what do we have here?  About five years ago, I lost the sensation of the outer layer of skin in both of my legs from about the mid-thigh, down.  Did it take a little getting used to?  Did I have to be super careful when shaving to avoid cutting myself?  Did I end up with bruises that I had absolutely no idea where I would have gotten something so dramatic?  Yes, yes, and yes.  Was it going to keep me from living, breathing, working.  No, there would plenty of that to come in other disabling forms.  I continue to press the pants against my legs, each time, feeling the cooler temperature of the fabric.  I then put my hand on my leg, and voila!…I can feel that, too.  Well, just tie me up in a bow and call me amazed.  Something else surfaces anew.  Another bud of hope.  You need to understand, that it takes up to two years and a max of five to see the full benefit of this treatment.  To be seeing so many little things so early, lifts my soul.  They may be fleeting and then return again.  But, for now, I will remain steadfast in my belief that I got here just in time.  That there was no other path that I should have taken, and that hope springs eternal in this house of healing.

My Happy Pants! Yes, that is my ever- so-purposeful hot pink duct tape holding them to the wall.  :)

My Happy Pants!
Yes, that is my ever- so-purposeful hot pink duct tape holding them to the wall. 🙂

MY NUMBERS ARE IN!!

My leukocytes are now at 18.9!!  Hemoglobin 112 and Platelets have doubled to 48.  Something interesting that Dr. Fedorenko explained to me today is that their are two different engraftments going on during this process.  Leukocyte engraftment and platelet engraftment (I didn’t know that!).  He said that when my platelets reach 50, they will be considered “engrafted”.  Meaning that they will be doubling down with my leukocytes to jump start this brand-spankin’ new immune system of mine.

HAIRS TO YA!

Dr. F. did another examination of my scalp, which now glares like the sun underneath the fine coating of what’s left of my hair.  He says, again “We will not shave your hair.  It will be completely gone in two days.”.  I’ve trusted this man every step of the way, and he’s never steered me wrong.  If he says two days, I say two days.  Bring it!

What's left!  2 more days till lift off!!

What’s left!  2 more days till lift off!!

I Don’t Want to Live Like a Refugee…

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I Don’t Want to Live Like a Refugee…

Well, at least I don’t want to look like one.  But, it turns out, I don’t have a choice.  When Dr. Fedorenko came in this morning, I asked him what time we would be shaving my hair today.  Mom was on her way and ready for photo ops.  He took one look at my scalp, which is now a very thin, heathery kind of blonde and said “We will not be cutting it today.”  “Because there is so little hair, I think that you should just continue to wash it until it all falls out.”.   That news was the pin to my balloon.  I was totally amped to go bald today.  My plan is to shampoo it, hard 3-4 times daily in order to speed along the process.  In the meantime, with my current do, I truly do look like some kind of refugee.  Lucky for me, I was given back my luggage today with all of the hats and scarves that I had purchased before my trip in preparation  for having to look presentable in public sans the hair.  Mom and I tried to have a fun little photo shoot, where we ended up laughing so hard, half of the pics were too blurry to publish.  Take a look below to see how my bald fashion is faring.

Refugee drama!

Refugee drama!

Side View #1

Side View #2

Side View #2

Bring on the hats.  I also have tan, pink, white, and charcoal.  When you can't decide...

Bring on the hats. I also have tan, pink, white, and charcoal. When you can’t decide…

I think I can do this!

I think I can do this!

This is how mom has to dress to see me, now. Did I mention she’s claustrophobic?

TODAY’S NUMBERS ARE IN AND THEY ARE OVER THE TOP!!!

Yesterday’s leukocyte #s were 2.3.  Today’s leukocyte #s are 12.9!!  12.9!!!  No wonder I can’t sleep at night.  I’ve got a lot of rebuilding going on.  This construction zone is working on O/T!  Of course, the waves, high fives, prayers and praise don’t hurt either.  In addition, my platelets have risen from 14 yesterday, to 24, today.  That helps to decrease my risk of bleeding and helps to get a little more oxygen to my brain…thank you, platelets.  I swear I’ll never take thinking clearly again for granted.  ha ha

Symptomatic Changes:  Due to the increase in leukocyte production, I have begun to experience muscle cramping in my left hand.  The kind that you get when you’re dehydrated (usually in your feet) and your hand starts to automatically clench together and you have to hold it open to alleviate the spasm.  But, that doesn’t always work.  It’s not something that’s really treated, because it’s just par for the course.  At night, I have also begun to have mid-lower aching of the spine (much like menstrual cramps), that the doc says is also due to rising leukocytes.  I choose to take no meds for it, so, it’s a suck it up Brooke situation.  Due to the hand spasms, my blog posts may take a little longer and be on a little later than usual (apologies).  Oh, I almost forgot…I am no longer required to utilize asceptic body cleansing.  I can just take your everyday shower.  Yippee!

That’s where we are today.  Holding strong, spirits up, sense of humor in tact.   I can’t thank  you all enough for keeping my spirits aloft.  That’s why we’re rockin’ this…HARD!

The Tide is High and I’m Holding on…

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The Tide is High and I’m Holding on…

What a difference a day makes here in Moscow.  And, I mean a BIG difference.

For those of you who know me, personally, and now for those who don’t, it’s no secret that I’m not the most patient chickadee in the hen house.  When I get something in my sites, I’m going to get it, and you won’t find me piddling around to wait for it.  I’m going to take care of it myself.  SET THE GOAL.  REACH THE GOAL.  DONE!  Who knew that my personal style of living would resonate into this medical adventure to rid myself of MS, but it has served me well during my stay.  Seriously, there’s really only so much that I can control with this leukocyte situation.  I can be as stubborn as an ox, but if my leukocyte numbers don’t feel like rising, it’s not like I can put the smackdown on them.   You simply must wait.  Wait is a four-letter word to me.  Grrrr.

Yesterday, my leukocyte levels were at .28, with an optimum goal for engraftment of 1.0…SET THE GOAL.  About an hour ago, Dr. Fedorenko arrived with my results (earlier than normal).  He said that my leukocytes were now at .23 (lower than yesterday).  My heart sunk.   I said “.23!!!  That’s lower than yesterday!”.  He replies “No, no, no, they are 2.3!”  The original goal, which he did not think I would reach for 2 more days was 1.0…REACH THE GOAL.  Not only did I reach my goal, but I more than doubled it in one day’s time.  DONE!   Don’t think for a moment that I’m taking credit for all of this.  With a cheer squad like I have, there’s no way I wasn’t going to reach that goal.  But, who knew it would be overnight?!

On the turn of a dime, everything changed.  He continued to ramble on that my isolation would end tomorrow, they would return my clothes to me tomorrow and that mom would now be able to visit, again.  She will have to wear a mask.  I will not.  Then, another lifestyle changing statement was made by the good doc.  He turned around and said “And, we will be shaving your head, tomorrow”.   Looks like I’ve finally got that date with Nurse Hatchet.  It works out perfectly, because then I will have access to the hats and scarves that I have in my luggage.  Of course, I will be featuring the “hair raising” event on tomorrow’s blog post.

Then what?  He said that beginning Monday, the 27th, they will begin reducing immune-supportive medications for about 4 days in order for my new immune system to thrive on its own.  I will then receive my first of 4 infusions of Rituximab, which, normally, all of his patients receive only one infusion, here, before they depart that targets B-cells.  Due to my history of MS that has been a non-responder to 4 typical MS drugs, I will be receiving 3 more of those infusions back in the States.  It is not mandatory, but it will help to keep any rogue B-cells from getting any crazy ideas about trying to take the lid off of my MS seal.  Basically, it is a triple-precaution, that is not mandatory, but wise.  It’s an additional 15 hours of my life within this year, that I’m sure I can squeeze in some kind of shopping trip to ease the inconvenience of it. 🙂  No matter the case, the MS will be halted when I leave this hospital and before I get those infusions.

By the end of next week, I will be getting released from the hospital a little ahead of schedule, and mom will be helping me to navigate the streets of Moscow in search of souvenirs, and a normal meal.  I will be weak, and the doctor says that dizziness/weakness will remain for up to 3-6 months due to the side effects of chemo.  Some of my MS symptoms will worsen before they improve due to the residual inflammatory issues that come with chemo.  But, I already knew all of this.  So, yes, I will be taking my time next week.  I have a small checklist of places I would like to go and they can all be reached by cab.

As far as my current symptoms go…for almost five days, I have lived without the MS Hug that has plagued me for years, and, when I have sporadic reprieves from my chemo weakness, my right foot continues to try to fight its way back into its correct position.  Also, clonus, which can cause an uncontrollable trembling of my feet when I place the “ball” of my foot on the ground, has begun to dissipate.  Small symptoms.  Huge to me.

I’ll leave you with this.

In the words of Blondie…I’M NOT THE KIND OF GIRL WHO GIVES UP JUST LIKE THAT!

Step it Up & Go Higher…

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Step it Up & Go Higher…

Oh, what a glorious day in Moscow!   No cloudy skies could possibly dampen this day.  THIS IS THE DAY THAT MY LEUKOCYTE NUMBERS HAVE BEGUN TO CLIMB!!  This is the beginning of the engraftment period in which my stem cells will begin to hone into position and set up camp with my new MS-free immune system.  Dr. Fedorenko predicts complete engraftment with 2 days. The goal leukocyte level is 1.0 for complete engraftment. We had already met this morning, but the numbers weren’t in yet, so, I showed him my new trick.  I leaned over my tablet, gently swished my fingertips through my bangs and a flurry of wisps of hair came floating down like snowflakes.  His eyes twinkled over his face mask and you could see that he was grinning.  His voice rose and he said “I predict, when I get your bloodwork results today, engraftment will have begun!”  He says that he will return in 30-45 minutes with the results.  When he returned, he told me that my levels had climbed from 0.12, yesterday, to 0.28, today and that, in fact, engraftment had begun.  He reminded me that the normal range of engraftment takes place within 7-10 days and mine should land at 8.  He also let me know that my platelet levels would now be adequate enough that I would not require any platelet infusions..  Yay!  To avoid the risk of a cut, he would still like me to wait to have my head shaved.  So, in the meantime, I will be playing “Lunch Lady”(see pic below)  in my room for a couple of days.  Like I’ve said…”Everybody looks good in blue.”

The Lunch Lady!!

The Lunch Lady!!

- Hemoglobin - Leukocytes - Platelets

– Hemoglobin
– Leukocytes
– Platelets

As far as my state of health.  I remain weak, but in very good spirits. All vitals are phenomenal.  Appetite is fantastic.  No pain or discomfort…AT ALL.  To date, not a single pain medication taken short of the surprise shot in the rump for a headache that was completely uncalled for.  I still struggle to get enough sleep at night, but am trying to make up for it with daytime naps.

The nurses now give me a two-handed fist pump when they show up to do my bloodwork and IVs in the morning.  I, of course, return the gestures.  Team spirit is contagious!

Please take a moment to celebrate with me today with one of my favorite Gloria Estefan dance tunes called “Higher” by clicking on the graphic below.  It’s perfect for the occasion and it gets my blood pumping  every time and gives you an idea where my spirits are at the moment.  Woo hoo!  Step it up and go “higher”!!

I’m Goin’ Down, Down, Down…

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I’m Goin’ Down, Down, Down…

That’s right!

MY RESULTS ARE IN!  My leukocytes have dropped to 0.12.  Just what we were looking for.  And, we’re not done yet.  My platelets have also dropped to 15 (yowza!)  He did mention that in 4-5 days, if my platelets remain low, I may require a transfusion to bolster those.  Whatev!  Just let me know when to be ready.

- Hemoglobin - Leukocytes - Platelets

– Hemoglobin
– Leukocytes
– Platelets

His visit with me today centered around this progressing neutropenic stage and what types of symptoms that I may experience.  He has recommended that I rest all day today, and I plan to do so.  Maybe that’s because he caught me sleeping when he walked in.  Two hours of sleep a night is not going to cut it.  He said that I will experience extreme fatigue, which is normal.  I am to be very careful not to cut or bruise myself.  He said that my MS symptoms will continue to worsen, but that will subside.  I am also to be very mindful of the cleansing regimen, and to just use common sense when it comes to any kind of cross-contamination of items that I touch.  .  Not there’s any chance in hell that there are any germs in this room.  They just came in and mopped down the walls, floors and windows with a thick antiseptic  cleanser, changed the bed linens as they do daily and, of course the antimicrobial light is always on in my bathroom.

He continues to be pleased with my blood pressure levels (though sometimes lower, but that’s just me), my temp remains normal or slightly below normal range.  I’ve lost about 4 lbs in the last two days…expected.

The last part of my meeting with the doctor today what all about…HAIR.  After talking to my US comrades who recently had their HSCT here, they each had a story of their own about when the hair came out/off.  I think I wouldn’t have been too concerned if it weren’t for a story about “Nurse Hatchet”, who just swoops in with an “off with your head” look on her face, and before you know it, you’re a cue ball.  I didn’t relay that to Dr. F.  I just said “When do we decide to shave my head?”  He said that he would like to wait 4-5 days until I have engrafted and then they will do it.  He said that it is dangerous to do it during this phase of treatment, as one misstep could cause a cut, which could lead to infection.  My hair is hanging on like a bulldog, so, I’m satisfied with his answer.

Talk about small things tickling my fancy these days.  They just brought in the package with my new hospital gown for tomorrow morning.  I think it has PINK flowers on it!!  My favorite color is blue, and the gowns I’ve had so far have all had blue or purple flowers on them.  But every once in a while, a girls wants to feel “pretty in pink”.  My second little treasure this morning was the lemon slice that was decoratively served with my breakfast.  I carefully, placed it in a bowl in the fridge and now it will be  the cherry on the top of my homemade iced tea that I make each night.  That’s right.  A lemon has me feeling all giddy and pampered.  LOL

Today, is the only day that I’ve awoken to solidly cloudy skies in Moscow.  It definitely changes the hue of my room, but it certainly won’t dampen my spirits.  The sun has been shining through the window of my life since the moment I stepped into this facility, and that will linger for a lifetime.

Peace and Love.

This Girl is on Fire….

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This Girl is on Fire….

Though my days have become rather mundane, there’s so much going on under the surface, it actually keeps me stoked as my numbers drop and this process of engraftment is soon to take place.  Well, at least, in a few days or so.  I want to explain why my leukocytes (leukocyte = t-cell) (see pic below) are dropping.  It’s because they are continuing to die due to the high-dose chemo.  In killing the t-cells, we are killing the MS that lies within the t-cell.  So for optimum depletion of the MS, the leukocyte numbers must go as low as possible so that my stem cells will be able to launch my new immune system with no defenders getting in their way.  I’m sure there’s some football analogy that would come in handy right now, but it escapes me.

This is a t-cell.  My MS resides within my t-cells.  That is why we kill them with chemo.

This is a t-cell/leukocyte. My MS resides within my t-cells. That is why we kill them with chemo.  Nasty little bugger!

Over the last three nights, and for the first time since receiving my high-dose chemo before transplantation, I’ve begun to have night sweats.  Moscow’s “White Nights” have become Brooke’s “White Hot Nights”.  You wake up each night, soaked with sweat from the neck down and you repeat this two or three times.  Dr. Fedorenko said that is the chemo at work.  When we were discussing the fact that my appetite continues to hold strong, he reminded me that even though I am carb loading, the chemo is working at a way faster rate of speed  than my level of food consumption.  He also mentioned that though I’m mostly sedentary throughout the day, my body is actually in the process of running a marathon.  Therefore, he says I can expect to lose some weight during these next two weeks.   Perfect.  I’m five pounds more than when I walked in the door, and I’d be happy to get back to my fighting weight.

I continue to sleep for only four hours per night.  Two at the beginning of the evening and two in the morning.  The night sweats don’t exactly make for a solid night of rest.   When I’m able to, I try to take cat naps during the day.  The doctor is satisfied with that.

IMPROVEMENT…EXCITING!:

During this inflammatory period of time, overall, my symptoms have gone back to their norm, which should change over the next 3-6 months, but that could begin to change while I’m here.  My fingers are incredibly numb and lack dexterity and my legs are very weak, but I’m holding my own.  However, yesterday, a symptom that has plagued me for over four years, magically disappeared.  I have suffered from what is called “The MS Hug”.  It is a tight banding that wraps around your ribcage from front to back (like a charlie horse).  It feels exactly like wearing  a corset, making it difficult to take a deep breath, difficult to speak, difficult to sleep, and, interestingly, difficult to eat anything other than small portions of food.  The tightness often turns into a painful spasm over which you have no control.  Basically, you have to ride it out.  Could be five minutes…could be an  hour…could last half the day.

Upon admission to the hospital, I quickly came to find that the eating habits and timing of meals for Russia, vary greatly in timing and portion of meals compared to our U.S. traditions. (see pics below)  You are served breakfast at approximately 9:00 a.m. that consists of oatmeal, porridge or a square of scrambled egg casserole with two slices of bread.  At 12:00 noon, you are served a snack that typically consists of two boiled apples and/or pears, with a small side of meat (yes, tongue) and two pieces of bread.  Then at 2:00 p.m., you are served lunch.  Lunch is the biggest meal of the day here, and when I say big, I mean big.  Too big for this corsetted chick to eat without having to endure some major pain due to muscle spasms.  As much as I’m starving and need to eat to sustain my weight, I end up throwing most of it away, or pay the price in a couple of hours of pain.  Dinner is served at around 6:00 p.m. and is a minimal offering of rice soup and bread.  I supplement during the evening with the protein shakes provided by the hospital.  They’re just enough to get me through the night and he encourages drinking them to complement your overall health.

Breakfast.  Oatmeal, some kind of bologna and two pieces of bread with butter.

8-9:00 a.m.  Breakfast. Oatmeal, some kind of bologna and two pieces of bread with butter.

12:00 noon-Snack Two boiled apples, two pieces of tongue, one hard-boiled egg.

12:00 noon-Snack
Two boiled apples, two pieces of beef, one hard-boiled egg.

12:00 noon - Lunch Vegetable soup, a boiled piece of chicken, tons of cauliflower and a chicken croquette...with bread.

2:00 p.m. – Lunch
Vegetable soup, a boiled piece of chicken, tons of cauliflower and a chicken croquette…with bread.

That all changed two days ago.  Honestly, I didn’t even realize it the first day.  It was after yesterday’s lunch that I had downed like I hadn’t eaten in days and realized that I had no spasms, pain or distress at all…just a full stomach and a satisfied appetite that I realized what was going on.  That’s how this HSCT thing works.  It sneaks up on you  when you least expect it and leaves behind gifts that may seem so trivial to a non-MSr, but are like winning the lottery for someone who’s ever had to live like that.  This is huge for me.  No more eating my appetizer at a restaurant and then having to have them box the entire entree to take home.  Heck, I may even be able to have a side salad.  Imagine the possibilities!!  Yay!

JUST FOR FUN! (hair still hangin’ tough)

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If you ever wonder how I look at 3:00 a.m., this would be it. This girl is on fire!!

MY LEUKOCYTE NUMBERS ARE IN!!!

They are the same as yesterday at 0.13.  He said that is completely normal, especially given that they had dropped a day earlier than expected in the beginning.  He said they will flatline within the next two days.  Otherwise, all of my other bloodwork is outstanding.  I remain very healthy, happy…and blessed.

Oh-oh-oh, Miss International Love…and Fees!

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Oh-oh-oh, Miss International Love…and Fees!

You’ve finally gotten all of the proceeds together to follow through with your HSCT here in Moscow.  You’ve made all of your financial arrangements with all of your banks and credit cards.  You’ve let them know the timeframe in which you will be moving the funds around, the approximate amount of funds that they can anticipate being transacted and that it will be for hospital payment, lodging, etc.  Well, it sounds like you really have your act together.  You should be so relieved to have that taken care of.  I know I was.  You see, I had already been warned that basically every single international patient to date that has tried to make their first payment to the hospital using a credit and/or debit card, was declined for some unidentified reason that varied from patient to patient.  So, there was no way that Brooke was going to fall into that trap.  No way!  Huh-uh!

Admission day arrives, and one of the first tasks at hand is heading to the administrative/financial offices, accompanied by Dr. Fedorenko so that he can act as translator.  On this day, you will make your first payment of $1,000, which covers the cost of your initial week of testing.  MRIs, ultrasounds, bloodwork, xrays, urinalysis and CTs, if necessary.  All of the paperwork is properly filled out with your home address, etc., and, finally the credit card transaction is put into motion.  I remember sitting there so excited to see that machine spit out that little piece of paper for me to sign…not so much!  DECLINED!  They try it again…DECLINED!  Trying to remain calm, when all the while I’m thinking “BASTARDS!”, I whip out my Target card.  Target specifically told me that they no longer charge any additional fees for international transactions, so they were first on my hit list.  The transaction goes through seamlessly.  Thank you, Target.  I’ll be seeing you again, soon.  I immediately texted my husband and put him, his mom (a former banker) and my local bank staff on the case.  Ultimately, they rocked it.  But, don’t think anyone made it easy for them.

With that all taken care of, I breathe a sigh of relief and I am made aware that the next payment will be due after my official acceptance/agreement to obtain HSCT at Pirogov.  That payment will be approximately $23,000.  then, the final payment will be approximately $16,000.  No problem.  I got this!

I’m accepted!  I’m moving forward with stimulation shots, new meds and the works.  I am on my way.  Now, it’s time for that next chunk of change to be paid.   This time, in order to avoid having to wheel me through the underground tunnel to the other side of the hospital, they have one of their financial people come to my room with a portable credit card machine.  How considerate of them.  I bet they were thrilled to be getting their money.  But they didn’t.  DECLINED!!!  I was mortified, crushed, embarrassed and incredibly stressed, all at the same time.  I thought, wait a minute, let me at least show them that I have the funds in the account. I pulled up my bank account and there was no question that the money was sitting right there,waiting for the transaction.  Please note, that at no time, did they make me feel uncomfortable or pressured, and, I think when they actually saw the funds in the account, it went a long way to relieving their fears and mine.

How could this possibly be happening?  Me!  The planner, organizer, one-step-ahead at all times person.  The entire scenario turns out to be marred with twists, turns, miscommunications, lack of communication and way too many levels of fraud security for my own good.  First, even though my bank was told the timeframe that I would be here, I was not told that I had to tell them a specific time and date that I would be making the transaction.  We finally did nail that down, and, once again…DECLINED!  This time the culprit was not my bank.  It was VISA.  My bank card is a VISA debit card, which means that I can use it at any location that accepts VISA, just like a credit card.  It turns out that my bank was allowing it to go through and VISA was blocking it due to possible fraud.  My local bank, God love them, put the hammer down on VISA and now they have cleared my cards for the entire length of my stay.  My bank’s good.  VISA is good.  Sighhhhhhh!   And, on the eve of my transplant, no less.

I am now paid in full.  I owe not another cent!  Oh, wouldn’t that be a fabulous dream?  I, of course, feel compelled to review my bank account online to make sure that everything has gone through and I can finally get a good night’s sleep before this life-changing transplant, on the next day.  Sure enough, the transactions had all gone through…IN ADDITION TO $2,000 IN “INTERNATIONAL FEES”!!!!  WHAT!!!??  Yet another small detail that the corporate headquarters of my bank failed to tell me when I was arranging my pre-trip finances.  I immediately start making mental comparisons to the things that I could have done with that $2,000.  Mainly, paying it forward when I return home…a top priority of mine.  Then I get to thinking about the fact that we have been paying our hotel bill with that card, and taking cash out of the ATM with that card.  My head starts reeling.  I pop back into my bank account and don’t you know it.  We are being charged “international fees” to do so, and at this point, they add up to several hundred dollars.  Each ATM transaction is $8.00.  The fee for the hotel was about $200.

What had to follow was the dreaded text to my husband.  “Oh, gee, honey. You know that $40,000 stem cell transplant plus extra expenses that we have to pay?”  “Well, it’s going to be a boatload more than that!”  “Love you.  Kisses.”    No amount of smiley icons is going to make up for that text.  Well, I’m married to a saint, and he took it much better than expected.  I’ve been really lucky that my mom has become quite savvy with our finances on the outside.  She finds the best deals on food, etc., in the most unlikely places, and she takes great care to be frugal.  We are very mindful that a large marjority of this money that got me here was donated and we want to honor that generosity.

To all of you future Moscow HSCTrs.  YOU HAVE BEEN WARNED!  Even the best-laid plans can be de-railed.  Have a Plan A, B & C in place. Or, just pay for everything in Rubles (cash).  Not exactly convenient, but I suppose it could be done.

TODAY’S MEDICAL NEWS…

I woke up with much more energy than yesterday.  In the shower at 6:00 a.m. and ready to face another beautiful Moscow day.  Albeit, through my room’s picture window.  As far as symptoms go, during this period of time, they all worsen.  Don’t have a panic.  That doesn’t mean that there aren’t changes being seen.  They are just currently thwarted by the inflammation caused by chemo and the lowering of leukocytes and platelet counts.   All completely normal.  The patient and the MS must heal from the chemo, the transplant and all peripheral treatment.  My appetite remains hearty, though I was warned by the doc today, that I can eat all I want, but I will be losing weight because of the energy that the body is burning to compensate for the lack of WBC, etc.  Forget the technical stuff.  I feel great…happy…peaceful.

MY NUMBERS ARE IN…

My leukocyte level has dropped to 0.13.  He predicts that they will bottom out over the next two days and then begin to rise.   That is right on schedule and I couldn’t be happier.  He seems to be genuinely pleased with my body’s resilience, and I must say that I agree.

Today's hemoglobin, leukocyte & platelet counts.

Today’s hemoglobin, leukocyte & platelet counts.

WISP WATCH!  NO MORE HAIR IS FALLING…YET!

Are You in Control, Lord? Are You in Control?

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Are You in Control, Lord?  Are You in Control?

As the days gently pass while in isolation, the routine allows for me to effectively plan my day, mostly, for no plans at all, and it is for this time that I’ve actually looked forward to, so that I might be able to give you a glimpse into what really makes me tick…who I am, why I’m here, how I got here, and why I remain so “strong, brave, committed” as so many of you have praised me for along the way. I appreciate the recognition, but, it’s not quite as simple as that. I didn’t turn into Superwoman overnight!

I know many of you following along are people “of faith”. Maybe you’re Catholic, or Protestant, or Jewish, or Buddhist. Faith is faith no matter how you slice it. Maybe you’re a non-believer. All are welcome in my world.

I was raised in the Protestant faith (Methodist), by the hand of strong-willed grandmother who wanted nothing more than her grandchildren to embrace the church, and, who now sits at God’s side. Add to that a Sunday school teacher, Albert Masood, Sr., whose teachings of over 40 years ago remain with me today and make for a very solid foundation of faith…unwavering, unquestionable faith.

Before you get carried away thinking that I carry my Bible in my purse every day and go to church every Sunday, you can just wipe that scenario right off the chalkboard. When my grandfather Warren passed away, at the funeral service, the pastor said “Warren was the most religious man I knew who never went to church!” That pastor hit the nail on the head with that remark and that is where my grandfather and I have so much in common! My grandfather also grew up in the church, but, as he grew older, he showed his faith through touching the lives of others, like taking such care of my grandmother’s every whim and the needs of their six children, caring for and taking in of family members, and in the end, making certain that every little old lady in town had the brakes and turn signals working on their cars for little or no charge (he was a retired mechanic).

I hold my relationship with God, so close to my heart that I tend to keep it just for myself. It is my happy place, and I don’t always want to share it. I’ve taken my faith with with me during my travels all over the world. Nothing says safe and secure more than having God and a quality Swiss Army knife in your back pocket. 🙂 Over the years, I have been approached by pastors, friends, family, all offering to have me come join their congregation. As much as I’ve appreciated those sincere gestures, I am 100% satisfied with the way I roll with my God and my faith. I’ll be honest. I have great difficulty walking into a church without tearing up. That’s how bad it is. It could be a wedding, a Christmas play, or a basket bingo. When I walk in, I get so overwhelmed by the fact that I’m in His house that it takes everything I have to keep it together. Yes, it’s true. I have a soft side! So, the next time you feel like asking me to a church “tea” or something, please don’t take offense when I decline. I’m just saving you from watching me break down when we walk in. ha ha

So, now, you must be like “Wow!, Brooke is way more “religious” than I thought”. No, I’m not. I just execute it in an entirely different way than you might. Or, who knows, maybe we have way more in common than you thought.

Here’s my philosophy on how I execute my faith. You will NEVER find me banging a Bible or throwing around the “Praise Jesus!” at every turn. Except, of course, if I’ve just had the most fabulous sip of Gascon Argentinian Malbec. Now, that is reason for a “Praise Jesus!”. He and God are the ones responsible for those grapes, right? You will never hear me say every day for every situation, “Well it’s all in God’s Hands.”, or “God will take care of it.”, or “Just pray and it will be okay.” There are certain extreme situations when every option available to you has been exhausted and there is nothing left but to leave it in God’s hands. In that I do believe. However, I feel and have always felt that this gracious gift of faith is no “free ride”. Do you really think that I’m over here expecting God to take care of every little thing while I just sit back and ride his coat tails?! Heck, no! I must do my part as well. I must prove how badly I want it and fight until there’s nothing left in me. It’s no different than getting a promotion at work. Just because you got the job, doesn’t mean that you don’t have to continue to earn your keep. That’s just a little more of my blunt, black and white, sensical take on life. Take me or leave me.

You may be wondering how my faith came into play when I was deciding and preparing for this rather extraordinary trip to Russia to save myself from my MS. It went a little something like this. I did the research. I knew it was the right thing to do and that I was going to make it happen, but, something inside of me longed for some kind of heavenly sign from my dad or from God. I didn’t have to have it to move forward, but it was definitely gnawing at me. Well, dad knows that I’m not that patient, and well, God knows…everything, so they humored me and gave me exactly what I was looking for. Dad (pic below) started “visiting” me when I would sit down to eat my breakfast, but, only if I was sitting in Doug’s chair at the island. One morning in particular, he came to me as soon as I sat down and, as clear as a bell I heard him say “You’re a Taylor (maiden name), and you can do this.” Well, that’s all I needed to hear. BOOM, DONE! Let’s book the tickets! God, on the other hand, visits me in the bathroom. I’m always deep in thought in front of the mirror, contemplating my day and he just kind of graces me with his presence. No visuals, no words…just a presence. And that’s plenty for me.

Dad's words of wisdom...

Dad’s words of wisdom…”You’re a Taylor, and you can do this!

Wow, man, this is getting soooo deep! NO IT’S NOT! Just hang on. It gets lighter.

So, who’s the everyday me? The one who mustered the guts to do this thang!? Here’s the deal. Much to my husband’s chagrin, I swear like a trucker. I’ve actually become quite talented at infusing swear words into multi-syllable words. The more syllables, the bigger the challenge. You try to live with MS for 10 years, and we’ll see if you aren’t slinging F-bombs on the daily. Just sayin’! Don’t worry, I keep my profanities within my domain. I know when to keep my mouth shut…sometimes. My family comes first. Work has always been a very close second. I have great friends who appreciate my sense of humor or all would be lost. I live a homemade country life while trying to infuse it with my big-city instincts. I’d like to think I have the best of both worlds…and I do.

Let’s get down to my medical status for the day. I slept for 4 hours last night…a record. It was only two at a time, but, I’ll take it. I woke up at 6:00 a.m., feeling fabulous, but weak (typical for this phase of the treatment). Get my shower, sit down to the computer, and, suddenly, I can feel my lights dimming. Not the ones in the room, but the ones in my head. I’ve passed out many times in my day, and this was it for sure. I took a deep breath and gingerly walked over to my bed and rang the nurses. I had already placed my head between my legs, pointed to the symptom sheet to let them know that I was dizzy and then they all switched into high gear. My BP was 85/48 and I was misting with sweat. They made me lie on my side, take my temp and start giving me IV fluids to assist with my electrolyte balance. They take an additional blood draw to check for infection/sepsis…it was negative. I was in no pain and not nauseous. This is simply typical and something that I need to pay close attention to and the utmost respect to in the process. Next up, Dr. Fedorenko is on the phone asking all of the usual questions and asking me to please rest until he gets to the hospital. After his examination, he once again says that this is to be expected, but to make sure to report any changes at all, and I will. The nurses just arrived with a battery of fluids to offset my little fainting drama (see the pic below).

This what you get when you get a lil' woozy around here.  Get the (!!!!!! ) out of my way.  I have to go to the (!!!!!) potty!  ha ha

This is what you get when you get a lil’ woozy around here. Get the (!!!!!! ) out of my way. I have to go to the (!!!!!) potty! ha ha

NOTHING NEW TO REPORT ON THE WISP WATCH…SO NO PIC TODAY.

MY NUMBERS ARE IN!! MY LEUKOCYTES ARE DOWN TO 0.18, EXACTLY AS THEY SHOULD BE AND ALL VITALS ARE IN CHECK.

PRAISE, JESUS!!

Can You Kneel before The King and Say “I’m Clean”?

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Can You Kneel before The King and Say “I’m Clean”?

In case you missed it, yesterday was the big move to solid isolation.  I knew it had to happen.  I knew it would be soon, and I knew exactly what to expect.  Or, did I?  Of course, I completely understood the idea of my door always being shut, and that brushing of teeth was prohibited, etc.  Easy stuff.  Here came the difficult stuff, or was it?  Enter the nurse who speaks a little English.  Little enough and broken enough that I had no idea what she was saying today when she was describing to me all of the apothecary-looking bottles filled with clear and golden-colored liquids that I was to use to wash my body.  Normally, we have a relatively good understanding of the point that we’re trying to get across to each other.  Not today!  Why was I not understanding that you use the same type of solution to wash your face and neck as you do your private parts?  Why was I not understanding that it was a two-step process?  Why didn’t I, nor don’t I, know for certain if  you’re supposed to rinse off with water first, then use the cleansers, or use the cleansers and then rinse off?  Why?  Why?  Why?   I was able to glean that she wanted me to wash my face and neck with the solution.  After that, it all went down hill.  First, I thought she told me that I didn’t have to do it until the evening, so I sat there in the bathroom, out of her way, so she could clean the rest of my room.  The next thing you know, she comes in pointing to my back and saying…I have no idea.  I’m like “Do you want me to wash my back?”.  She points to herself and I deduce that she is going to clean my back.  Ah-ha.  I do remember Dr. Fedorenko telling me that she would show me how to do that the first time.  I take the shirt off.  She loads up a gauze pad with some type of alcohol and says “Vodka!”, “Da, Vodka” and holds the gauze to my nose, giggling.  Sure enough, it smelled exactly like Vodka.  I made a motion as if I was drinking out of the bottle and we laughed.   She finishes my back cleansing and walked away.  I grab a towel to cover up, and I wait.  Now, what am I supposed to do?  I sit back down on the toilet seat while she continues cleaning.  She comes back and says…I have no idea, and points to my legs.  I suppose I was psychically supposed to know that I was supposed to be cleaning those next…and my private parts?  I close the door and get to my business, (young ones and macho men look away)  and YIIIIIKES!!  I start yelling “No!”, “No!”, “No!”  Here’s the deal.  I’ll be 49 in September.  I’ve never had a hot flash in my life and my period has been on time every month for 37 years.  You would think, after the crazy week of physical manipulation and stress that I’ve been through, that I might have been spared that perfectly-timed feminine monthly reminder.  ARE YOU KIDDING ME!!??  Ok, Brooke, reel it in.  You’ve had nothing less than a stellar track record during this entire treatment.  Get your head on straight and be glad that you’re not experiencing menopause mania, yet.  I knew that I had to immediately report my discovery to Dr. Fedorenko, because he specifically asked me to tell him if it happened during the neutropenic stage of the treatment.  Ding, ding, ding!  We have a winner.  So, what are the ramifications of this happening during this phase?  I wanted to know if I would be forced to used pads, which I haven’t used since I was 12, or if it was okay to use tampons.  Or, would there be a risk of toxic shock syndrome.  Yes, it’s been about 30 years since the first big toxic shock scare and it still haunts me.  Luckily, he said that “yes”, I could use tampons, but, I am to keep a very close watch on any abnormal bleeding or clotting.  Fair enough.  Breakdown over.

The nurse sets up what is now my sterile dish washing area, wherein, dishes that I use never leave the room, and before they are washed and put away, they are placed for 15 minutes in a holding tank of  special water (I’m going to imagine it’s that far out “diamond water”).  ha ha  They are then removed and dried.  Even though the staff would wash your dishes for you, it has become a tradition for us ladies to do it for them.  It’s like a game where we try to get them washed and dried before they come back to do it.  Both Tammy and I brought our own little bottles of dishwashing liquid with us.  It’s fun, and it brings a sense of “down home” normalcy to a not so normal situation.  These nurses do so much for us.  It’s nice to see the look of gratitude when they see we’ve returned the favor.

I’m in the home stretch with this body cleansing debacle, and I decide to wash my hair in the sink as the evening winds down.  Brilliant.  Why didn’t I think of that, before?  Now that I’m feeling as fresh as a Vodka Gimlet, I’m ready to settle down in front of my laptop, listen to some tunes and chill.  Flying through the outer corridor door is the nurse/bartender motioning for me to take my temperature.  I do, and hold it up to the glass so she can record it.  She then starts pointing to my bedside table.  Once again,  a look of bewilderment on my part.  There’s my pillbox, some alcohol spray and a blood pressure monitor on the table.  She motions to the crook of her arm and through the glass I say do you want to take my blood pressure?  She points to me.  I say “You want me to do it?”  She says “Da (yes)”.  I’m thinking, okay, I can do this.  I wrap the cuff around my arm.  I think it looks perfect and she keeps shaking head no.  I’m all ready to push the automatic button and I see her start gowning up to come in.  What the hell did I do now?  I’m no nurse!  She turns the cuff.  Apparently I didn’t have it turned to the correct spot where you catch the pulse.  She then asks me if I’m a doctor.  WHAT!??  I laughed.  She said “I am Medical Assistant, are you?”  I shook my head no, looked over at my computer and mimed typing on the computer.  THEN, she got it and said “Ohhhhh”.  We both laughed…hard.

So I’ll end this evening by asking all of you from this point forward to look at me with the respect of a “Medical Assistant” (nurse in Russia).  I have serious cramps, and a blood pressure cuff, and I’m not afraid to use it!

NEW ADDITION…I’m going to start posting a pic of myself each day (if I can get a decent “selfie”) and call it “Wisp Watch”.  As of this morning, after I was done washing my hair, I did begin to see a few wisps fall into the sink.  This is a new development.  My hair never falls out.  This should get interesting…

I leave you with a few pics of from new cleanliness regimen and a brand new Wave pic hot off the presses.

My body cleansers.

My body cleansers. Notice the pink duct tape labels?

Sterile gauze pads that you soak and wash with.

Sterile gauze pads that you soak and wash with.

The anti-microbial light that is now always on in the bathroom.

Mouth gargle, that is used after each meal.

Mouth gargle, that is used after each meal and in lieu of brushing teeth.

This is the dishwashing station, where the dishes must be soaked in a treated water for 15 minutes.  My "diamond water". :)

This is the dishwashing station, where the dishes must be soaked in a treated water for 15 minutes. My “diamond water”. 🙂

Me in my fresh, floral hospital gown.  Fabulous!

Me in my fresh, floral hospital gown. Fabulous!  This is where I will begin my “Wisp Watch” pics of the day.

My nemesis.  The Cuff!

My nemesis. The Cuff!

Here's my NBC crew waving my stem cells along to their homes.  Keep it up!!

Here’s my NBC crew waving my stem cells along to their homes. Keep it up!!

NUMBERS JUST IN!!!  MY LEUKOCYTE LEVEL HAS APPROPRIATELY DROPPED TO 0.2!!

Livin’ it Up While I’m Goin’ Down…

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Livin’ it Up While I’m Goin’ Down…

Pre-testing, over.  Stim shots, over.  Catheter placement, over.  Chemo, over.  Stem cell transplant, over.  That went rather quickly, don’t you think? At this point of the treatment, EVERYTHING revolves around your daily blood test results.  I will have a blood draw early each morning, the results will be processed by early afternoon, while, behind the scenes, my meds will adjusted accordingly.  Only one of my lab results yesterday was out of range.  That of the liver, which Dr. Fedorenko said, based on me having taken so many MS immunomodulating drugs in the past  (Betaseron, Copaxone, Gilenya, Tysabri) and the fact that I had just endured chemo, that range was not alarming and that he has had patients with double that result in the past.  Otherwise, kidney function, as well as everything else was completely normal.  In hindsight, it’s crazy to think of all of the damage that I’ve done to my body by taking all the typical MS drugs.  That was also a contributing factor to why I was only able to get minimal stem cell collection on the first day of collection.  It’s my understanding that those drugs have an effect on your bone marrow.  Who knew?!  If the doc tells you to take something that will help to keep your MS at bay, at least in my case, I shut up and do what I’m told…for a while.  ha ha

If you’ll notice on the upper right sidebar of my blog, I’ve included a “Leukocyte Watch”.  At this stage of the game, that is what my world and level of isolation will revolve around.  The leukocyte levels will be indicative of the fragility and/or growth of my new immune system.  When the number hits 0.50, my level of isolation will change, as will the protocol that takes place in the room where I currently reside.  I will remain in the same room I have been for the last week, for the remainder of my stay.  However, my inner door will always remain closed unless to use the restroom and all who enter will be gowned up, masked up, and bootied up.  In addition, mom will no longer be able to visit (Look out Moscow, Connie’s on the loose!).

THE RESULTS ARE IN!!

Dr. Fedorenko just arrived to share with me that my leukocyte level had dropped to 0.47 and that my room’s protocol and I would be stepped up to the highest level of isolation.  By reaching this number, I have now entered the neutropenic stage of the treatment, which means that I will be living with a very low number of white blood cells in my system.  This increases my risk of infection and leads to my increased level of isolation.  This period will last approximately 7-8 days.  Over that 7-8 days, my numbers will first continue to drop.  By the end of that period, they will begin to rise, with the goal of 1.0 leukocytes, which will indicate that my stem cells have actually engrafted (taken hold) and are starting to rebuild a my new immune system.  He said that I had reached the goal of below 0.50 one day sooner than expected and, for some medical reason, that was a very good sign of successful results in the future.  Way to overachieve leukocytes!  You’re the best!

Dr. F. told me that within a few hours, the nurses would arrive to completely change out the linens in my room, scrub the room down, and me.  Yes, me.  At least for the first go around, they will be teaching me, with special solutions for each part of my body, exactly how to cleanse myself  for maximum removal of bacteria or other harmful germs.  I will then be able to wear only my underwear and a bra, with a hospital gown (I’ll post pics of that, for sure).  They will allow me to wear my socks.

As far as moving around my living areas (bedroom, corridor, bathroom), I must always keep my door shut.  When I go to the bathroom, the door must be shut behind me at all times.  I am able to access my food and drinks.  He said that the nurses will now be fully gowned, and masked when they enter the room.  I will once again begin receiving stimulation shots in the upper arm, once a day at 3:00 p.m.  I will also continue to receive two doses of protective IV fluids, twice a day.  As he reviews my bloodwork results each day, he will adjust my medications accordingly.  He said that I am also to pay keen attention to my symptoms from this point forward.  Any changes to temperature, digestive issues, dizziness, weakness, etc., must all be reported immediately.

And so we wait.  For seven to eight more days, I will be recording my leukocyte numbers as I receive them.  I think watching the numbers drop will be a bit more harrowing that the anticipation of watching them rise, as I know that one must come before the other, even with the risk involved in maintaining such a fragile state.

I realize this post is much more technical than those to date, but, I really want you all to understand as much as I do and be able to explain it to the best of my ability.  I’m not a doctor.  I’m just the messenger.  If my facts/figures seem a little off, maybe they are, but most of them are taken from his hand-written notes to me and detailed conversations regarding what I am to expect.

During this downtime, I will still be completely wired.  I am able to keep ALL of my electronics and headphones and rest my little heart out.  Time to heal.  Time to grow.  And, hopefully, time to touch a few more lives out there of people with MS, who think they’ve run out of options.  For me, that is what this blog is really all about.

Let’s lighten this up a bit.  Today, in the midst of the flurry of test results, consultations, instructions, my lunch came.  It included the usual 2 microwaved (or boiled) apples, which I’ve come to love.  You just scoop out the middles like applesauce.  It’s delish.  Well, as they always do, they throw on a piece of cow’s tongue, just to taunt me, I’m sure.  Today, I was feeling strong, brave, fierce and famished.  I doused that bad boy with salt and pepper and ate it like it was filet mignon.  It tasted exactly like roast beef and the consistency was the same as roast beef.  From now on, I’m all over the tongue.  Brooke wants more tongue!!  ha ha ha

Thanks all for hanging in there with me.  It’s going to be a long 7-8 days, but, we’ll get through it.  Mooooo.  🙂

Let’s Party Like it’s My Birthday…

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Let’s Party Like it’s My Birthday…

Drink Bacardi, like it’s my birthday…

On the day that a patient has their stem cell transplantation (the day you get your stem cells back), it is coined your new birthday…the birth of your new immune system, which is free of MS. As much as I don’t think of it as a physical birth, I have no problem playing along if there’s a celebration involved. Feel free to have a cocktail in my honor. Happy birthday to me, baby!

It was a perfect day today, here in Moscow. The sun was shining and the sky was so blue. My sterile “box” just seemed to have a warm glow that lended itself to creating the perfect vibe for my mindset. It’s as if it knew what was about to transpire.

My routine has become me lying in bed from 5-6:00 a.m. I get in the shower at 6:00 a.m and am ready for whichever nurse may come flying in the door with an IV drip or 5, or injections, temperature, pills. Today, was a little different. Dr. Fedorenko promised that there would be no early morning anything, so, I decided to sleep until 6:00 a.m. Lie in bed until 8:00 a.m., have breakfast and then get my shower as late as possible. I ended up in the shower around 9:00 a.m. and when I came out, the furniture arrangement had changed. The bed was in the middle of the room, my side table moved to the far wall and a vitals monitor placed on top of it. The floors were mopped and every possible touchable surface was disinfected.

Dr. Fedorenko arrived to let me know that at about 1:00 p.m., they would start moving in all of the medical supplies required for the transplant and that my stem cells would arrive, via courier, shortly thereafter. They did arrive, promptly. I was asked to remove my yoga pants and lie down. I was able to wear my tanktop and my own underwear. They hooked three electrodes to me, placed the automatic blood pressure cuff and began my run of IV Solumedrol which they utilize during the transplant to avert any allergic reaction to the stem cell preservative. Next up, Dr. Nikita arrives to assist. The nurse, Gillana takes center stage, and a bevy of other nurses are fluttering in the hall as my mom tries to take pics from a distance. A stem cell transplant is a very big deal here no matter how many they do, and the staff all seem to marvel as it take place, as well as stand ready to help if needed.

Dr. Fedorenko proceeds to tell me that we are about to start the transplant and to warn me that I may feel a sensation of hot fire in my throat, extreme pressure in my chest, difficulty breathing and painful back and muscle pain. He said that I may also become very dizzy. Thankfully, because I’m in constant contact with other HSCTrs, I was already well aware of those potential setbacks. The two most ratcheting experiences that you have while you’re here, are your catheter placement, which is a small surgery, and THIS, the transplantation. I had been so lucky so far, that I knew the odds were no longer in my favor, and I was ready to pay the Piper for my ticket to freedom.

An oxygen mask was placed on my mouth, which was refreshing. Dr. Fedorenko proceeded to hold my hand and said “We are beginning the transplant…NOW”. Of course, I braced a little, and nothing, I knew exactly where I wanted my mind to be and was completely focused. Dr. F. commences his arsenal of questions “Do you feel any pain?”, “Are you having difficulty breathing?”, “Do you have a hot feeling in your throat?” All the while, I am completely in the zone, breathing very deeply and calmly. I finally had to say “No more talking.” He said “No more talking…okee (with Russian accent)”. From that point on, I used a nod of the head to indicate yes or no. While this entire conversation is going on, I’m still thinking that they haven’t done it yet, because I’m not feeling anything. Next, he says “We are done with the first bag.”. Because I had two days of stem cell collection, there are two bags. If you remember, the first bag only had 800,000 stem cells in it and the second had 1.2 million, so, I knew with the second bag, this was when I would be sphewing out a few “Sweet Jesuses”. Well, I think Sweet Jesus was there, but he most definitely was not being uttered across my lips. Again, no pain or sensations. I must say though, from the first bag on, you can taste the preservative used in the stem cells and it tastes like creamed corn (who doesn’t love creamed corn?). Crescendo….Dr. F. states “We are finished.” WHAAAATTTT??!! I jokingly say “Where’s the scary part?!” They all chuckled. There were some very, very happy, “I came to do my job and I did it well”, staff in that room. They were all so proud.

After the transplantation, the IV Solumedrol continued to run, as well as protective fluids. After they have completed, they bring a bed pan to a chair beside the bed (bottle for men) and ask you to urinate into it in order for the doctor to inspect it for color and consistency. Well, I knew as soon as they put it on the chair, that my legs were not long enough to reach the floor and straddle the chair at the same time, let alone keep my balance while doing so. I requested that they put it onto the bathroom toilet so that I could grasp the bathroom sink to support myself. They obliged. Note: color/consistency…good! Although I was a little wobbly after the transplant, a lot of that had to do with the Solumedrol, which continues to fuel my hunger. Lunch had been served during the transplant and was being held for me to ravage. By 1/2 hour after the transplant, I was up and ready to go. Not anywhere in particular, just the restroom to purge all of the IV fluids.

So, there you have it. Miracles never cease in this stately medical facility. Blessings of comfort continue to flourish for me and the hope of an MS-free life for me grow closer. Right now, my symptoms are ramped up due to the swelling from the Solumedrol, but, that will subside. Starting tomorrow, they will begin to closely monitor my bloodwork. We will wait for it to bottom out, and then we will wait for them to rise. That’s how the flow goes. I will have more details on that process as the days progress.

I would like to leave you with transplant pics from today, as well as pics from a little something that I came up with last night in my spare time. You can’t lock me up in a golden tower and think I’m not going to be thinking stuff up!!! I started a World-Wide Cheer Wave (just like at a football game), challenging friends and family around the world to do the “Wave” and post it on FB for everyone to see. It was a huge success and supporters, young and old, two-legged and four-legged came out to get me through today and my stem cells to their homes. GREAT JOB, EVERYBODY! I really do have the best cheer section…EVER!

Please, feel free to go have that Bacardi and enjoy the pics (all are clickable to make large)! Cuz’ it’s my birthday!!

THE TRANSPLANT!

Pre-transplate mood tunes.

Pre-transplant mood tunes.

Waiting for the stem cells and prep.

Waiting for the stem cells and prep.

Dr. Fedorenko checking on the stem cell delivery.

Dr. Fedorenko checking on the stem cell delivery.

Prep cart.

Prep cart. Is that a lobster pot I see? Hmmm.

The stem cells arrive!!

The stem cells arrive!!

Vitals are in check!

Vitals are in check!

Transplant accessories?

Transplant accessories?

Stem cells are warmed in a bucket.

Stem cells are warmed in a bucket.

Tranplantation in action.

Transplantation in action.

Me throwing my ceremonial bucket of left over stem cells.  It's a tradition!

Me throwing my ceremonial bucket of left over dry ice. It’s a tradition!

THE CHEER WAVE HEARD AROUND THE WORLD…

Where the Wave began. In my room in Moscow.

Where the Wave began. In my room in Moscow.

Vicki Wilson, St. Augustine, FL

Vicki Wilson, St. Augustine, FL

Sandy Wolford, State College, PA

Sandy Wolford, State College, PA

William & Harry, wherever they want to be!

William & Harry, wherever they want to be!

Patty Chwatek, keeping the wave going at Planet Fitness

Patty Chwatek, keeping the wave going at Planet Fitness

My husband's NESL blacktop crew!!!

My husband’s NESL blacktop crew!!!

Margaret O'sullivan from New Jersey.

Margaret O’Sullivan from New Jersey.

Lesa Lashinsky from Hollidaysburg, PA

Lesa Lashinsky from Hollidaysburg, PA

Lauren Abbot & Friend from Minnesota

Lauren Abbot & Friend from Minnesota

Kristy Cruise from Gold Coast, Australia.

Kristy Cruise from Gold Coast, Australia.

Mick, helping me get some satisfaction.

Karen Frederick doing the jammy wave in Woodbury, Pa

Karen Frederick doing the jammy wave in Woodbury, Pa

The Peters boys doing a double wave from Erie, PA.

The Peters boys doing a double wave from Erie, PA.

Clair Peters doing her very first wave.  She's already got it down!!

Clair Peters doing her very first wave. She’s already got it down!!

Autumn's awesome yoga Wave...

Autumn’s awesome yoga Wave…

Alison Elder waving it up in Tyrone, PA.

Alison Elder-Bonsell waving it up in Tyrone, PA.

Adam doin' the Wickel Wave!!

Adam doin’ the Wickel Wave!!

My 611 co-workers waving on my stem cells.  Love them!!

My 611 co-workers waving on my stem cells. Love them!!

Tuck Russel doing the canine wave.

Tuck Russell doing the canine wave.

This little one is helping me reach for the stars.

This little one is helping me reach for the stars.

The Altoona Chorus Wave!!

The Altoona Chorus of Sweet Adelines International Wave!!

I Can Sleep When I’m Dead…

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I Can Sleep When I’m Dead…

Right?

Since our arrival in Moscow, I have had one good night’s sleep. That was the first night in the hotel. I usually only sleep 4-5 hours a night, anyway, but, after admission to the hospital, I found that staying in a deep sleep for any period of time was next to impossible. And, just about the time you think your body is back in sync; it’s time to start the 4 nights of stimulation injections at 11:00 p.m. and 3:00 a.m. It’s understandable that things could get a little off kilter. Since moving to the third floor (the bed is much comfier), I try to go to bed at 11:00 p.m., but find that I am only able to sleep for 2 hours…period. Then, I am up wide awake, and refreshed. It’s not like I feel miserable or worn out. I just can’t sleep. Add to that we are in a time of the year here called “White Nights”. I experienced a very similar situation when I was in Ireland around this time of year. It stays daylight forever. It could be 11:00 p.m., and it looks like it is 9:00 p.m. It never gets completely dark. So, fine. I’m not miserable, but I’m not stupid either. I know that I’ve just gone through four days of chemo and I’m about to have a stem cell transplant done, all of which is very stressful to the body. In an effort of self-preservation, I approached Dr. Fedorenko so see what he thought. He wasn’t really happy about the lack of sleep and mentioned that “Well, you are also very energetic” (using jumping hand motions). I think that was his kind way of saying “You’re a spaz! Try to not overdo it.” Ha ha He recommended sleeping pills, or that I try not to sleep/nap during the day at all and only sleep at night. I tried the not sleeping all day for one night. I was so exhausted I felt like I could sleep for two days. Nope…two hours. That’s all I got. Last night, I caved and took the sleeping pill. He swore that it would have no adverse, psychotic, crazy effects and it didn’t. But, I’ve decided they’re just going to have to get an elephant gun to bring me down. I did get about four hours of sleep, but I was up four times for potty breaks. Good news, this time, I was able to get back to sleep after each break. Dr. F. reassured me that poor sleeping habits are common among chemo patients and not to worry, but, he wants me to be in tip-top shape for the big day tomorrow (Tuesday). I get my stem cells back between 1-2:00 p.m. (5-6:00 a.m. EST).

Chemo Craziness…or Not

After four full days of chemo, still no side effects. I felt a little dizzy this morning, but breakfast took care of that. I just had my morning consult with the doc and he asked me if I was feeling tired. I said “No.”. I truly do believe that I’ve functioned at such a lower level of energy for so long, that my interpretation of tired or not tired is skewed. I may look like I’m always running around like a maniac, but underneath it all, I’m just pushing four times harder than the average Joe. Is there an Oscar category for that? Dr. F. confirms that if I do start to feel fatigued from the chemo, it is completely normal. I don’t know why I’m having difficulty wrapping my head around the fact that I’m doing so well with the chemo. Am I grateful? Absolutely! But I have read and heard so many horror stories, and I have been fully prepared for the meltdown that may occur. Day after day, treatment after treatment, I seem to be responding beyond expectations. Of course, the attentive care that I’m receiving plays a large role in the fact that I continue to thrive under such circumstances. My vitals are at their optimum…kidneys, digestive tract, breathing, BP, temperature, etc., are all unremarkable. In addition, I maintain a healthy appetite…maybe a little too healthy (thank you Spandex). Blessing, blessings and blessing all around! Yes, I always take the “expect the worst, and anything else is a gift” route, but, this is pretty mind-blowing.

Let’s Put This Thing to Bed

I took my morning walk through the corridors continuing to test my new and improved foot. It continues to try to position itself properly. I took the walk with my trekking pole, but halfway through my stroll, I got cocky and started holding the trekking pole up in the air and walking without it…the entire way down the hall!! You got it!

If you all would like to join in the transplant pep rally, tomorrow, please set your prayer/good vibe alarms, phone or regular, to 5-6 a.m., tomorrow (EST), May 14. Hmm…I wonder if there is a cheer app on my/your phone? Nothing like a little “timely cheerleading”. Oh, and the chant will be “OFFENSE, OFFENSE, OFFENSE!”. ha ha The transplantation is a very intense procedure and will take every ounce of mental and physical agility I have in me to tolerate it. My plan is to focus on the prize while it’s happening. This IS the prize, and I don’t mind.

It’s a sunny, warm day here in Moscow. I may have to take my new toy out for another walk. Come tomorrow, no more outside until I’m released. Update — Just back from outside. It is absolutely gorgeous, and surprisingly, the freshly blooming foliage smells just like home. Awwww…

Rock on, people!

Oh, Mamma Mia!

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Oh, Mamma Mia!

Today, in the U.S., we celebrate Mother’s Day!  We salute the ultimate caregiver.  I am going to take this opportunity to address a vexing and all-to-real dilemma/decision that each person who considers having HSCT will have to face when they decide when and where they will be treated.  I will concentrate solely on Piragov Hospital in Moscow, Russia.  I’m going to warn you ahead of time.  On the whole, I am very black and white in my own decision-making.  Problem, solution, done!  So, what may come across as blunt is my personal voice of reason.  I’m here in Moscow, now, and I’m going to help you decide whether or not you need to have a companion with you during your stay.

Questions We Ask Ourselves & My Answers to Those Questions:

Q.   Do I have a family member/friend who is able to sacrifice approximately six weeks of their time/income/own family to accompany you to a foreign country, and, can you afford to feed, house and transport them for that period of time?

A.    It’s going to cost you anywhere from $6,000-8,000 to house that companion, and that is at the very reasonably priced Best Western Vega Ru that is 3ish miles from the hospital and convenient to all transportation (metro to Red Square and points beyond), malls, delis, grocery stores, etc.).  TIP:  The AARP discount is generous and could save you a lot of $$$.  AAA may also offer similar discounts.  It’s going to cost that companion between $13-18 each way, via taxi, from the hospital to the hotel for 20-25 of those days, if you feel the need to have them there that often (get the calculator out!).  Dr. Fedorenko or his staff do arrange for the cab to take your guest back to the hotel (your cost).  The airfare almost slipped my mind.  Our tickets (Delta) were about $900 each from JFK (R/T) = $1,800.  Are your eyes rolling like a slot machine, yet?  How much to feed the companion?  For some crazy reason, the hotel room service is incredibly cheap, unless you’re ordering breakfast.  You can easily get a roast beef sandwich, fries and coleslaw for $6 sent right to your room.  You must pay, on the spot, in Rubles…no charging to the room.  The ample morning breakfast buffet is $15-18 and offers a plethora of American-style goodies.  So, if your guest is afraid to venture out to see this fabulous city (shame on them), they could essentially eat at the hotel the entire time (boring!).  Ok, that’s my summary on that.  You’ll have to run the totals.  I’m on my 4th day of chemo and mathematics is not really high on the priority list for today.  Ha ha

Q.   Do I NEED to have someone here with me during this treatment?  In particular, checking in/looking after me at the hospital?

A.    HELL, TO THE NO!!  Once you are admitted into the hospital, you are 100% completely looked after, fed, rooms cleaned, linens changed, and if you need physical assistance of any kind at any time, the nurses are one ring and just steps away.  Forget the language barrier.  I think the hand gestures for “I’m going to toss my cookies” are universal.  Let’s not forget, during the length of your stay, every day (including weekends) there will be multiple visits from Dr. Fedorenko who checks in to see how you are doing and to keep you abreast of your test results and the next course of action.  He even supplies you with his e-mail and phone in case of emergency (like, taking a double dose of your pills…oops!)

The second portion of my answer is where the “blunt” begins.  Do you already know that you are not the type of person who could handle going to a foreign country by yourself, navigating to the hotel/hospital from the airport by yourself, being satisfied with spending hours alone by yourself?  If the answer is “Yes”, then you better get to fundraising, cashing out the 401Ks, IRAs, home equity loans and pay to have someone accompany you.  You’ll never make it out of the airport without blowing a cerebral gasket.  Just sayin’.  My point is, if the cost of bringing someone with you is a point of contention, or could possibly lead to you not coming at all, then you really need to do whatever necessary to meet your financial goals to make it happen.  But, if you’re like me, and you don’t care who, what, where you have to hurdle to rid yourself of MS, you could definitely take this trip solo, with no fear AT ALL!   BOTTOM LINE…DO YOU WANT TO GET RID OF YOUR MS OR NOT??!!!

SUMMARY:

At this point you might be thinking “Wait a minute, isn’t her mom there with her?”  Yes, she is.  By the grace of God and a community that is generous beyond words, she was able to come with me.  She is 72 years old and continues to work part-time at an art gallery (workaholic!).  IF you do have the means to bring someone with you, I can only hope that they will embrace this city and its culture as my mother has.  She has marveled at their work ethic, their artistry, their customs, and the grandness that this city offers.  She’s already navigated her way to Red Square via the Metro.  One of her favorite sites was the elaborately painted porta-potties, that you have to pay to use (go figure).  The attendants at the grocery stores know her.  I think they’re already calling her “Con” (her name is Connie).  ha ha  She has already befriended all of the cabbies at the hotel, the concierge, the bellhop and one fabulous attendant, Ana, who speaks English well and is always ready to help.  She already had a cabbie try to scare the bejeezes out of her with his crazy driving, and went so far as to make her sit in the front seat so that she’ll really feel it when her head hits the windshield.  What does she do?  She doesn’t grab the door handle and taps her fingers to the Russian music he’s playing on his radio.  PSYCHE! Mr. Russian cabbie!!  Suddenly, he slows down (she passed the test), and they’re BFFs.  As far as the things that mom has done for me while visiting me in the hospital, that have been great, but, if you’re on your own, you would survive, are the following:  tucked my blanket under my toes when they got cold during my stem cell collection; bring me food from the outside; reach for things for me if I was immobilized; take pictures of events.  Today, she’s bringing me pizza to celebrate Mother’s Day.  This trip is her gift.  Next year, she’s getting a potted plant.  🙂

So, on this Mother’s Day, I say kudos to all of our moms and/or companions, whether you need them or not.  I hope my take on the situation, at least here in Moscow, can help you to make some tough decisions.  But, seriously, can they be tougher than your MS?

🙂  Oh, and a shout out to my beautiful daughter, Carson, today.  Next Mother’s Day, I promise a marathon shopping day together!

 

Sound the Alarm…Sound the Alarm!

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Sound the Alarm…Sound the Alarm!

For two crazy reasons, one late last night, and one this morning, there was a need to sound the alarm, or dial 911 or at least buzz the nurses’ station.

CRAZY REASON #1:

At 10:30ish last night it was time to take my nightly medication.  Well, if you remember, yesterday, I had taken a picture of my pill box and posted it on my blog to indicate the increase in the amount of meds that I’m be prescribed since we’ve entered the chemo phase of the treatment.  When I took that pic, I had the lids open to the box.  When I was done, I closed the lids and placed them back on my bedside table.  What I didn’t know was that the lids were not completely snapped shut and when I transferred them to the other side of the room, I tilted the box and all of the pills ran into the same section.  I had done all of that hours before it was time to take the meds and before a day long of chemo.  In the dark, I opened the appropriate lid, start downing all of the pills, and I get to the last one, and as soon as I swallowed it, I realized that I had taken way more pills than I remembered having to take.  So, I run to my phone to look at the pic of the box, and, sure enough, there were 6 pills in each section (I took 12).  When I realized that I had taken a double dose of everything, I instantly rang the nurses’ station and in the 20 seconds that it took them to get there, my life flashed before my eyes and I had visions of them having to pump my stomach out.  I was convinced that it was going to get really ugly, really fast. Two nurses arrived and I had to explain/charade what had happened.  One of the nurses did know a little English, so that was helpful.  They had to call the doctor at home, to ask him what he would like me to do, all the while,  I’m thinking, “Hurry, hurry, hurry, I’m ingesting this stuff!!”  They put Dr. Fedorenko on the phone with me and he explained that it was perfectly okay, that they were ½ doses of prophylactic meds and that there would be no harm done.  The nurses recommended drinking extra water, which I did.  The English-speaking nurse, picked up the “Symptoms List” which is in both English and Russian so that you can point and indicate what you are feeling.  She pointed to “Nausea”.  I shook my head “No”.  I took my phone out and used the Google Translate to ask her if there was a word for “Studipidity” on that list, and then pointed to myself.  She got quite a chuckle out of that encounter.  Dear God, Brooke…wake up!!!!

CRAZY REASON #2:

I woke up at around 3:00 a.m. (that’s become my norm), head to the bathroom, and noticed that the dexterity in one of the fingers of my right hand that has been losing mobility since last summer, is suddenly, no longer immobile.  I wiggled it around a bit, made a fist, shook it out, and thought, hmmm.  I’ll check it out in the morning.  I wake up at 6:00 a.m. this morning and while still in bed, notice that the finger is still functioning well.  I’m like, cool.  I decide it’s time to get moving and head to the bathroom for a shower, and notice that the foot that I usually drag along across the floor wherever I go, is actually lifting itself up and clearing the floor (I have been wearing a brace to help that foot clear the floor for over a year).  Ummm…okay.  Given my discovery, I decide to take a stroll around my room to see what’s going on.  The foot consistently tries to lift up.  I decide to keep calm and get my shower.  While showering, I discovered that the leg that I always have to lift with my hands to maneuver is lifting upon command, by itself.  Alrighty, then.  If you think this is good, it’s about to get better.  I get all shined up.  Heck, I even put some lipstick on, and decide that I’m going to take a walk up and down the halls to see what other little buds of improvement/change I might see.  First, I realize that it was much easier to maneuver out of my door.  It usually takes a twist and a pivot and a turn.  I get into the long corridor and notice that my right foot, which over the last two years has turned outward to accommodate a swing-gate that I acquired in addition to lifting my hip to have my foot clear the floor, has turned forward (the correct position) and the front of my foot (mid-foot to the tip of the toes) is lifting and clearing the floor without any effort on my part.  Mind you, it is still not the normal height that a person’s foot would clear the floor, but for me, and inch or ½ inch means the difference between and brace and no brace!!  Of course, I had to keep testing it, and before you know it, the muscles in my knee were starting to get strained.  Why?  Because they haven’t been utilized in that way for over two years.

Over the past two days of chemo, Dr. Fedorenko has asked me if I had seen any changes, to which my response was “No”.  Honestly, I really didn’t think that you would start seeing anything until after the transplantation.  It turns out I was wrong.  The chemo is already beginning to kill the T-cells that have been attacking my brain and spine, and it’s giving my body a chance to see if there’s anything left in the engine.

After all of these discoveries, I could not wait for my morning meeting with Dr. F.  I had a list and I made it in such a way that my improvements were on the bottom of the list.  It turns out that my internet went down right after all of this happened and I was crushed because I wanted to share the news with the world that miracles were happening here.  So, I went through my list with him and last on the list was “Internet down”.  I told him that I could not connect to the net and that today it was absolutely crucial to be able to reach everyone.  He asked why, and I proceeded to tell him that I needed to let everyone know that I’m seeing improvement in my functioning.  His eyes lit up and sparkled with curiosity.  I started tearing up and he thought something was wrong.  I told him they were happy tears and this was the best day ever.  We shared a hug and we went over all of the improvements.  He gave me his usual “Bea-u-ti-ful!” and headed off to see if one of his techy friends could fix my net.  I was able to get it going myself, and here I am, telling you, hope lives in Russia.  These may seem like really, really small things to you, but they are absolutely, potentially, life changing improvements for someone living with MS.  This is just the beginning.

Peace and Love…

Hold on to Me as We Go…

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Hold on to Me as We Go…

As we roll down this unfamiliar road…

While this experience is new to me, I am so much at peace here, it’s almost eery.  Nahhhh…ethereal is more like it.  It’s as if I’m following orders that have no verbal directive, yet, I know exactly what to do next.  I suppose that’s what happens when you come to a place of complete trust and acceptance of your path.

What was next for today, was another day-long run of chemo/fluids/etc.  I got about two  hours sleep last night.  Not that I didn’t try to sleep, or that I was uncomfortable. I managed to wake up at 6:00 a.m., knowing that my first chemo run wouldn’t be until 11:00 a.m., so, I had plenty of time to just lounge around till breakfast (9:00ish), and get my shower in plenty of time for the chemo.  Surprisingly enough, I sat up in bed, and I felt really stellar.  Now, my version of stellar, may be your worst day, but, all things are relative when you have MS.  I felt a complete turnaround from 24 hours prior.  Given my newfound physical status, I thought I would jump (not really) into the shower to be ready before breakfast.  I did so, with ease (not so shaky/sore today), and just in time for my favorite nurse (nicknamed Bon Appetit by the 3MSketeers) to deliver my meal.  I had just taken my last bite at 9:30 a.m., when the IV nurse arrives all ready to go…1.5 hours early.  Of course, I didn’t question her, because I wouldn’t understand what she was saying, anyway, and figured the sooner we got started, the sooner it would be over.  Of course, Dr. Fedorenko arrived shortly after to explain that he wanted to run it earlier so that it wouldn’t interfere with my night-time schedule as much (thoughtful).  He ALWAYS wants you to know what, why, where, who, and when at every step along the way.

By the time all was said and done, I think I had six IV bottles of  meds, including chemo.  The infusion had made me sleepy, so I tried to nap for the last hour of it.  When the nurse arrived, I asked her if there would be more and what time.  She showed me on her watch in military time…5:30 p.m..  To date, I still have no side effects from the chemo, most likely attributable to the increase in meds (pic below), but the man at the helm says the chemo is cumulative and the effects will be as well.  My temperature currently stands at 97.5.

As I was lounging on the bed, one of the nurses, whom I’ve spoken with before, and knows a little English (she learned it in college), began to ask questions about where I lived…was it in the city or the country.  She described to me that she and her husband had an apartment in the city (she works 24-hour shifts), and a big house in the “village” where they have a garden and grow potatoes (she showed me the callouses on her hands).  As soon as she said that, I grabbed my phone and held my finger up as if to say “one minute” and I pulled up the pic below to show her where I lived.  The second I looked at the pic that is the view from our back patio (pic below), it was like a dagger through my heart, and I started to tear up.  That view is where I have found solace during my darkest days these past 9 years, and to see it, knowing that in the two weeks that I’ve been gone it is now blooming and more beautiful than ever, just hit me.  Yes, I’m that strong, warrior, where’s my machete, I’m gonna kick some MS butt woman, who thought nothing of venturing to Russia for a stem cell transplant, but I certainly don’t have a heart of stone, and this quick lapse melted mine.  We ended the conversation with me complimenting her and the staff on the wonderful job that they ALL do, and told her that other countries could learn a lot from them (I’ll be summarizing those observations in a post toward the end of my stay).  She thanked me, and went on her way with a smile.

Home...from my back patio.

Home…from my back patio.

At this point, I had about 45 minutes to take a walk outside (it’s 70+ and sunny).  I head downstairs, and realize that I had just been infused with six bottles of fluid and had only used the restroom once during that timeframe.  Suffice to say, it was a very short walk.

So, promptly at 5:30 p.m. the nurse arrives with two more bottles.  The bottles are smaller, but the drip is slower.  She makes an impromptu announcement that shel’ll be back at 10:30 pm. for one last round.  There goes that early date I had with my pillow.  These next two days of chemo serve as the perfect opportunity for me to just kick back, take naps, chill, and heal.  I don’t know, maybe if it wasn’t for the five days of high-dose steroids, two days of stem cell collection; surgery for catheter line placement, abdominal injections (Heparin), and two days of chemo that I wouldn’t have seen my emotional strength faltering today.  It’s like being in a car accident, and the day of the accident you feel fine, but the days following you feel like a huge bruise.  Speaking of which (pic below).

From first day of stem cell collection.  That's what happens when 800,000 stem cells course through your veins!!  :)

From first day of stem cell collection. That’s what happens when 800,000 stem cells course through your veins!! 🙂

All ramped up with protection!

All ramped up with protection!

Don’t let this post lead you to think that I’m drowining in my tears.  I just want to let you know that the tears I’m shedding are happy ones, not sad.  When I see that view, I see my future in it…and it is bright.  Hope is a powerful thing and I haven’t had any for so long, that it’s difficult to process.  NOW, WHERE IS THAT MACHETE OF MINE!!

The Ruler & the Killer Baby

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The Ruler & the Killer Baby

Today (Thursday) is the day that we began to KILL my MS…with chemo.  Here’s how it works.  First of all, my MS does not reside in my stem cells.  It resides in my T-cells.  The chemo that I am currently being administered is killing off my T-cells that contain the MS abnormality, along with the rest of my current immune system.  Next Tuesday, when my recently extracted stem cells are transplanted back into my body, they will serve as the “rescue” team.  They will act as new “seeds” from which I will grow a new immune system that is free from MS.  We are wiping my immune slate clean, and starting over!!   I want to make one thing very clear.  If you do not utilize chemo, you will not obliterate the MS abnormality or your current immune system.   You may see similar treatments being touted around the world that may provide for just an injection of stem cells, but no chemo.  They are not valid/viable treatments.  Unless, of course, you only want to spank the MS, instead of beating it into submission.

My first run of chemo meds began this morning at 11:00 a.m. on the dot…that’s just how they roll around here.  For some reason, I thought it was only going to be for an hour or so…not.  It’s 4:30 p.m. and I’m still on the drip.  No biggy.  It’s not like I have any plans or anything!  ha ha  The chemo is not the first bottle of fluids that I received in this regimen.  I received other IV conditioning/protective agents (MESNA, etc.) as well as constant fluids so as to avoid having the chemo settle into the organs.  For safety’s sake, it must be constantly moving.  Almost forgot…During chemo, I also received a Heparin injection in the abdomen to avoid thrombosis.  In addition to all of the IV medication, the amount of pills that I will be taking four times a day, has been completely ramped up.  I used to take one pill twice a day.  Now, I’m taking seven or more every six hours.  These include antibiotics, anti-nausea meds, and a laundry list of preventive meds that keep my health one step ahead of the game and the chemo at all times.  That is their specialty here.

So, wow, Brooke, your first big chemo run.  How was it?  How about those side effects?  Any burning in the nose?  Change in taste?  Glassy eyes?  No, no, and no!  I’m convinced that I’ve been living with so many side effects of MS for so long, that nothing else really phases me anymore.  On any given day, I could wake up with something that is numb or dysfunctioning.  It’s just a way of life.  It’s serving me well here as I’m constantly waiting for the other symptomatic shoe to drop…and it doesn’t.  This is where my philosophy of “expect the worst and anything else is a gift” is playing out nicely for me.  And, let’s not forget the horror stories about having to use the restroom, accompanied by your IV pole, every 10 minutes while your chemo runs…NOTHING, NADA, ZIP!

I continue to remain cozily holed-up in my bright and cheery “box” in this world-renowned facility.  I want for nothing and I know that at the ring of a bell, a nurse will be at my door.  I’m not a bell-ringer, though.  I don’t want to be labeled the “needy American”.  ha ha

TIP OF THE DAYShower Shields (see pic below)– today I had my first shower since having my Hickman line installed.  Before I came to Russia, and while Jeff and Tammy were still here, they described to me how you had to protect the line while in the shower.  Well, of course, the Google queen knew that there had to be a solution somewhere.  I found Shower Shields, reasonably priced, on Ebay.  Click on the pic and it will take you straight to the Ebay site.  I used one this morning and they worked like a charm.  It would have been difficult/dangerous for me to keep my balance, hold a towel on my chest and try not to get my line wet.  Well worth the purchase.

Shower Shield.  Protects your cath line while in the shower.

Shower Shield. Protects your cath line while in the shower.

NOTE:  Oops, Dr. Fedorenko wanted to clarify that it is NOT a Hickman line.  It is a Central Venous Catheter (CVC).  From now on, I will refer to it as my “cath line”.  He also divulged that it was “special” because of its silver ion impregnated cuff for more aseptic usage (snazzy!).  I told him “Too much information.” (makes me woozy).

A Little about Last Night…

Admission:  I woke up at about 4:00 a.m. this morning, virtually unable to move.  I felt like I had a concrete corset on and was only able to take very shallow breaths.  Why?  Well, the “fullness”, which is common following cath line placement, was taking its toll.  For me, who lives with a ribcage that holds me in a constant vice, the line was just what  my muscles needed to set off spasms.  So, what do you do? You lie still, breath shallowly, and private message your comrade in Hawaii, Jeff, who just had this done a few weeks ago!  LOL  He assured me that it would pass within a couple of days.  That was enough for me.  I fell back to sleep, and by the time I woke up, though on uneasy footing, I was able to rally.  Crisis diverted!!

Oh, GEEZ, this is the part where I eat my words…”Michael Row Your Boat Ashore, Hallelujah!”  They weren’t kidding about the potty breaks!!!!

COME JOIN THE PARTY!!!…

I’m sitting here waiting for another IV run of something that they are bringing at 7:00 p.m., and then, tomorrow morning at 11:00 a.m. the killing will continue.  I want to invite you to get into the “zone” with me tonight, by clicking on the logo below, and listening to a song from the Hunger Games soundtrack called The Ruler and the Killer Baby.  It has an incredibly primal sound to it, and for one who likes to visualize making something happen, I think it sets the perfect tone for my chemo on its warpath to kill my t-cells.  If you want, wait until it’s dark,, close your eyes, listen to all of the words, and you’ll be right there banging your head and slaying the dragon with me.  My chemo is the Ruler and the Killer baby!!

hunger games

Would You Still Call Me Superman…

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Would You Still Call Me Superman…

Yesterday (Tuesday) was the first of what turned out to be two days of apheresis (stem cell collection) for me.  The minimum number of stems cells required for transplantation is 1.5 million.  50% of patients are able to extract the minimum number in one day, the other 50% in two days.

When a patient begins their stem cell transplantation process in Moscow, Russia, there are certain landmarks in the treatment that are significant.  First, the week of pre-testing which includes or excludes you from receiving treatment and helps the doctor to assess and inform you of what type of result you may see from your treatment based on your history, MRIs and current level of disability.  Second, is the commencement of stimulation injections, two per evening, at 11:00 p.m. and 3:00 a.m., for four days.  Third, is the apheresis.  During apheresis, you are hooked up to an apheresis machine that looks much like a dialysis machine (see pics below), wherein your body’s total blood volume is circulated through and separated three times in order to collect your stem cells.  Your blood is returned to your body at the same rate that it is extracted and only a small amount of peripheral blood is lost in the process.  The apheresis takes approximately 4.5-5 hours and you must lie completely still during that period of time.  You may not leave the bed to use the restroom.  For those of you who have MS, a very common symptom of MS is some degree of difficulty with bladder and/or bowel control.  For this reason, they recommend that you wear a diaper (Depends) during the procedure, just in case you can’t make it through until the end (for the record, I was a big girl, no issues).  Yes, that’s right.  I wore the Depends!  Throw the pride away!  Just promise me that the next time you run into me at the grocery store that you don’t think of me as the woman who had to wear a diaper while she was in Russia, but the woman who would stop at nothing to rid herself of MS.  See my apheresis survival kit pics below.

Apheresis Survival Kit

My Leevi Steele t-shirt and a Depends!

My Leevi Steele t-shirt and a Depends!

A head pillow is a MUST!  I got this one at Target for $6.  It is inflatable, so, it fits in your luggage.

A head pillow is a MUST! I got this one at Target for $6. It is inflatable, so, it doesn’t take up a lot of space in your luggage.

I knew the first day was going to be a tough one and had to look no further than the story of young  boy from the community in which I live who battled with cancer for two years, who brought together an entire community of friends and strangers and who put up one of the toughest fights of anyone of any age that I’ve ever witnessed.  His parents, out of necessity, also, had to travel outside of the U.S. to receive treatment.  Leevi Steele lost his battle just a day short of his 6th birthday in March of this year.  He’s gone from this earth, but his legacy lives on, and I was honored to wear a t-shirt in his memory for that first, very scary day for me.  Who knows, maybe it was because I was wearing it that I experienced NONE of the typical symptoms of apheresis.  For example, numbing of the lips, wrenching of the muscles, nauseousness, pain, etc.  The nurse was able to find a good vein on the first try and the rest of the procedure was flawless.

The first day’s results came in and my collection number was 800,000.  This meant that I would have to endure another day of collection, utilizing the opposite arm and being immobile for another five hours…bring on the second pair of Depends.  Today, by the grace of God, a ton of worldly prayers, and me visualizing billions of stem cells being created, we collected an additional 1.3 million stem cells, which brings my total to 2.1 million, which is well over the 1.5 million required.  These stem cells were shipped off via courier and cryogenically frozen until they will be returned to my body next week to restart a new immune system that is free of MS.

1st day apherisis.

1st day of apheresis.

Me & Dr. Fedorenko.  Yes, he always has that twinkle in his eyes.

Me & Dr. Fedorenko. Yes, he always has that twinkle in his eyes.

The apheresis machine with my stem cells hanging on the side of it.

The apheresis machine with my stem cells hanging on the side of it.

As if these last two days weren’t enough, it was decided that immediately after today’s collection, that I would have my Hickman line installed (see pics below).  A Hickman is much like a PICC line that runs in through either your jugular vein or subclavian vein and rests beside your heart.  This device will be my best friend for the next few weeks, as all medications that I receive, including chemo, will be able to be administered through this line without the need for multiple injections.  So, about this Hickman line installation…it was not exactly what I expected.  First of all, I had a subclavian one installed, instead of a jugular line (Google it for details).  The actual insertion was not painful at all.  The injection of anesthesia at the insertion site was a bit ouchy and there were some pinching sensations in the back of my neck (don’t know why).  I could hear him running the line into my body (kind of like a “ziiiip” sound).  I was just coming off the 5-hour apheresis, so I was already shaking like a leaf, and you have to lie flat on your back on a very narrow table.  You are asked to turn your head to the left, put both of you arms to the side.  You are not permitted to breath deeply, cough, or move your head to the right.  It was at this point that the tears started rolling.  It was the first time that I had cried in front of the doctor and it wasn’t sobbing, it was just the realization of everything that my body had endured over the last week and was going to continue to endure in that moment.  It was at that moment that the bright-eyed Dr. Fedorenko, held my hand, made jokes, and had me smiling in no time.  After the placement was complete, Dr. F. escorted me to the xray department, where they confirmed that the line was appropriately positioned.  I have been warned that I may feel discomfort/awkwardness for the next couple of days, but, that it will subside.  I had the Hickman installed about 3 hours ago, and so far, I feel completely normal.  I think my Leevi mojo continues.

Hickman line.

Hickman line.

My Hickman line. I did it!!  Whew!!

My Hickman line. I did it!! Whew!!

That’s where we’re at.  Tomorrow, I begin a four-day run of chemo, followed by one day of rest, and then on Tuesday, May 14th, I will receive my stem cells back during the actual transplantation (the next big landmark).

I realize that this posting seems a bit more somber than most, but, it’s incredibly important for me to relay information that is as accurate as possible for those who may be considering this treatment.   Sometimes, it’s not all rainbows and marshmallows.  I am feeling incredibly whooped at the moment.  My skin hurts from the Solumedrol.  My feet are a bit swollen from the apheresis (common), and I’m a bit wobbly.  But, I am uplifted as well.  Thank you all for following along, and, I’ll keep you by my side with my superhuman might…

Kryptonite

Walk this Way…a 4-Day Update!

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Walk this Way…a 4-Day Update!

I apologize for my delay in posting.  Technical difficulties beyond my control!  I have every intention of blogging on the regular from this point forward.  Let’s start with Friday.

FRIDAY, MAY 3RD

Solumedrol – High-Dose Steroid:

Friday morning I began my first of five days of the IV steroid, Solumedrol.  The normal protocol is three days, but, due to my large enhancing brain lesion load, he chose to administer it for five days (1000mg for the first three days, and 500 mg for the last two).  This is not my first Solumedrol rodeo.  I have been required to take it three times in the past.–Two times for optic neuritis and one time as a “maintanence” followup to the optic neuritis.  My relationship with this drug is a love/hate situation, wherein, it hastened the reversal of my optic neuritis, but left me feeling like I had been hit by a bulldozer in the drug’s aftermath.  My average turnaround time to get back to feeling any sense of normalcy was about three months.   My neurologist now has a hot pink sticker with a skull and crossbones on my folder that warns to never prescribe it to me again.  As I describe it to my neuro, I tell him it makes me feel like what I imagine death/dying to be.  So, imagine my dismay, when I discovered that would be the first treatment that I would receive as part of the transplant protocol.  I trust Dr. Fedorenko implicitly, and, so far, short of the full on cry that I had immediately following my first infusion…I think I looked at a cup or something ha ha, I’ve had minimal side-effects.  I freaked mom out, because she knows I’m not a crier.  I just kept saying through the sobbing “It’s just the drug.  It’s just the drug.”  Typical side-effect.  No worries.

It was immediately after my infusion that I decided it was time to record my “before” walking video in order to document my current disability status and to be able to compare to any improvements that may occur post-HSCT.  It was after previewing that video on the camera, that I did do a very genuine whimpering kind of cry.  Think about it.  How often do you ever see yourself walk?  Other people see you walking, but you never see yourself walking.  Yes, everyone knows that I walk with a limp.  I know that I walk with a limp, but I never see it.  I just live it.  I took one glance at the video playback and crumbled.  It was right then and there that I decided to post it on the blog (not originally my plan), to put my current status into perspective for any of you following along.  SEE THE VIDEO BELOW.  For those of you who haven’t seen me in many years, hold the tears, because I’m exactly where I need to be to stop this train wreck.  It’s all good.  God, does my butt look big??!!

Stimulation Injections:

Friday night was the first of four nights of two subcutaneous injections, consisting of G-CSF (Filgrastim) at 10 mkg per kilo of body weight…One at 11:00 p.m. and one at 3:00 a.m.  I experienced absolutely no side effects.  These injections precipitate above-normal production of stem cells that will flow over into the blood stream and will allow for extraction though a peripheral vein (jugular or arm).  My veins have been assessed, and they will be able to utilize an arm vein.  Whew!!   These injections are very quick and the pain does not linger long at all.

SATURDAY, MAY 4TH

I continued with my 11:00 a.m. runs of Solumedrol that lasted approximately 2.5 hours.  During those first two days, I gained about 4 lbs., my face grew puffy and my hands began to swell a bit. I had a meeting with Dr. Fedorenko to discuss the plan for the week, and it was at that point that he divulged to me that given my currently EDSS (disability scale), the history of my MS, and what he currently visually sees of my level of disability, that it is very likely that I would be confined to a wheelchair within 3 years!  Gut check!!  Suddenly, any concerns I had about any discomfort that I may endure over the next few weeks, seemed to fade away.  That evening, I had my second pair of stimulation injections, with no side effects, whatsoever.

SUNDAY, MAY 5TH

An uneventful day with my 11:00 a.m. Solumedrol run and then, a day of rest.  Yea, right!  I was freaking out because I hadn’t had any internet access for the past two days.  It was weighing heavily on my mind.  If pressed, could I make it through this experience with no outside communication?  Yes, but, it certainly would make the ride a lot more lonely, and I had so been hoping to share every detail with prospective HSCTrs around the globe.   I topped off the evening with two more stim shots, which brought my total to six of eight.  Still no side effects.

MONDAY, MAY 6TH

At about 9:30 a.m. this morning, I was taken by Dr. Fedorenko to take my “breathing” tests.  Also known in the U.S. as pulmonary tests.  He said that these tests are not a deciding factor as to whether you are accepted or not for HSCT, but, that they need the results so that they can make accurate assessments later in the treatment, when are administering drugs that are processed through the lungs.

We then moved all of my belongings to the 3rd floor, where I will reside for the remainder of my stay.  Two nurses from the 2nd floor escorted me up with my luggage and blew kisses to me as they left.  They took incredibly good care of me…each and every one of them.  They may be traditional with their glass IV bottles and old-school gauze-wrapping techniques, but they know exactly what they are doing and take great care to be the best they can be.

My new room is an aseptic room that is equipped with air filters, tap water filters, and a corridor that leads to my room (they refer to it as your “box”).  There is a door between the corridor and the room, that during your isolation period will be closed, as well as the outside door at the end of the corridor.  The room is small but ample and provides me with space to eat, store my electronics gadgets, and stash of food and clothes, for the time being.  In the corridor, there is a refrigerator and microwave.  The bathroom is much like mine on the 2nd floor, but a bit smaller.  SEE PICS BELOW.  I’m happy to say that they were able to finally get my Wi-fi back in check and I can once again monitor every sneeze, hiccup, burp and yawn that takes place from here to Mumbai.  I had my morning run of Solumedrol in my new digs, with minimal, typical, rib cage spasms.  But, I wanted to note, that to date, I have required NO pain meds at all.  Suck it up people!  ha ha  I’d better stop getting all cocky.  Next thing you know I’ll be screaming “Narcotics!!!”.  LOL

My name and info on my door.

My name and info on my door.

Corridor into room with fridge, microwave and serving area.

Corridor into room with fridge, microwave and serving area.

Air filtration system.

Air filtration system.

My computer/eating area.

My computer/eating area.

Hmmm.  Don't want to know.

Hmmm. Don’t want to know.

The shower.

The shower.

Tomorrow is a huge day for me.  Between 8:00-8:30 a.m. (Midnight EST) I will be having my apheresis (stem cell collection).  It is a 5-hour experience and 50% of people who undergo it will be able to have extracted the appropriate amount of stem cells to proceed with the transplant.  The other 50% will need an extra day of extraction in order to meet the required goals.  Here’s to praying for big numbers tomorrow.  If able, I plan on doing a blog post tomorrow that details the experience.  I have a “big gun” of a motivational trick up my sleeve to get me through the process, and I would love to share it with you.  This is where things start to heat up, folks.  Are you up for it?  I am.

Wait a Minute, Wait a Minute…

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This post is being made on behalf of Brooke, who, due to wifi connectivity issues and the Easter holiday in Russia, she will only have access to Facebook and not any other internet web sites, including her blog site, until Monday. Technical support is scheduled for Monday, and she hopes to give you a complete update at that time. She is composing those posts in real time as events occur over the next couple of days while they’re fresh in her mind and can contain as much detail as possible. For prospective HSCTrs, in particular, she doesn’t want you to miss a single step of the process.

MINI-UPDATE… Friday, she began her first of four nights of stimulation injections and will be moved to the third floor to the 3rd floor (aseptic) on Monday. Apheresis will take place on Tuesday morning. In the meantime, she has filmed a video of her walking in order to document and compare to any improvements post-HSCT. She will be posting that video on Monday as well (if possible).

Brooke would like to thank you all for your continued support and prayers, but, right now, you’re going to have to wait a minute. 

Thank You,

Atlanta Scream Team

Your Lips Move but I Can’t Hear What You’re Saying…

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Your Lips Move but I Can’t Hear What You’re Saying…

Of all of the challenges that you would anticipate me facing during the next month, I can honestly say that the language barrier will be the least of those.  I am not fluent in Russian, however, I have been studying on CD (Pimsleur) over the last four months and have learned just enough to get by (greetings, numbers, days, common phrases).  To fill in the gaps, I have my handy dandy Google Translate app on my smartphone.  Today, when I needed to have a taxi called for my mom to come pick her up at the hospital, I spoke that directive into my phone in English, and then played it back to the nurses in Russian.  They understood, completely, and before you know it, mom was safely back at the hotel.  I went so far as to kiss my phone in front of the nurses, as if to say “Thank you God!” and we all chuckled and nodded in agreement.  The translate app also gives you the ability to take a snapshot of Russian print (menu, food box, directions, etc.) and it will tell you what it means in English.  My phone and its apps have been an invaluable tool in navigating the language, currency, measurements, temperatures, etc.

I think it’s important to mention that even if I wasn’t electronically dialed in at every step, communication with the staff would still be relatively cohesive.  There’s a lot to be said for charades, the simple nod of the head or a warm smile.  They are pretty much the universal language of the human spirit.  The staff at this particular hospital is well aware of why you are here and how far from home you are.  They know what you are about to endure, and they really do go over and above to make certain that you feel safe, secure and cared for.

A distant ship smoke on the horizon…is getting closer every day.  It’s my future life, free of the chains of MS.

Tomorrow’s teaser

I should be moving to the 3rd floor for the remainder of my stay, and, stimulation injections (the first phase of the treatment) are scheduled to begin tomorrow night (Friday) at 11:00 p.m.

I’ll Be in My Castle Golden…

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I’ll Be in My Castle Golden…

But, until the gates are open, I just wanna feel this moment…

It’s that moment when the doctor comes in and tells you, that even though your “breathing” tests will have to be completed on Saturday, he would like to proceed with stimulation injections on Friday!!!  I got my green light, people!!!  Patience and prayers, patience and prayers!!!

I am currently on an antibiotic for the cough/cold/whatever it was.  I have not had a fever the entire time and all of the achiness and pain are gone.  I do still have congestion that mimics the ordinary cold…no problem.

I felt so much better this morning that I got up, got my shower and decided to take a stroll through the hallways.  I paused for a moment to glance out the windows in the waiting room and who arrives, but Dr. Fedorenko.  The man is everywhere!!  He asked if he could speak to me in my room, and I’m thinking that it could be really good news or really bad news.  He proceeded to summarize my tests and the indications with regard to my MRIs.  He is very thorough in his explanations and by the time he was at the end of his summation, I was ready jump across the room and say “SPILL IT!!!”  It was then that he said we could begin stimulation injections on Friday.  I was a bit taken aback, as I thought that this cold/flu-type thing was going to shoot me in the foot, but it turns out that it doesn’t have any effect on the beginning of the treatment, at all.  I will be finished with the antibiotic by the time of stem cell extraction and chemo and antibiotics are already administered during that phase as a matter of protocol…I’m covered.  So, I sheepishly say, “Does that mean it’s a go?!”, and he answered, “Yes!” with those eyes that are so blue and filled with such individual care for each of his patients.  He said that he specifically treats each patient differently, based upon the patient and their history.  No cookie-cutters, here!!  Of course, the cheerleader in me was doing a mental herkie.  All that was missing was a set of pom poms and my saddle shoes.  Yes, I’m that old!

Dr. Fedorenko explained that for five days, beginning with my stimulation injections, I would be receiving Solumedrol infusions.  MS patients with non-active lesions or less of a lesion load normally get a 3-day dose.  Since my brain looks like some kind of carnival freak show with all of its glowing speckles, I’m getting the 5-day treatment to reduce inflammation.   I’m very familiar with this IV steroid.  I have had it three times before in response to bouts of optic neuritis.  Honestly, I’m not looking forward to it, but, I got over the side effects of it before, and I’ll get over it again.  So what are these “stimulation shots”?  In the past, when people had a bone marrow transplant, stem cells were extracted from the bone marrow in the hip area.  There are very few stem cells flowing through your blood.  The stimulation injections are given to induce stem cell growth over and above normal production which prompts them to enter (overflow) into the blood stream.  After four days of these subcutaneous (under the skin) injections, at 11 p.m. and 3 a.m., the stem cells will be separated from my blood through a process called apheresis, frozen and returned back to my blood after I’ve received four days of chemo.  Many more details on the apheresis when the day comes (should be next Tuesday).  Things move quickly here…no pussyfooting around.  They are my kind of people!!

Tomorrow will be another down day of nursing with antibiotics and rest.  Oh, I almost forgot one of the most important parts of my conversation with Dr. Fedorenko.  Even though I’ve promised myself that I would  hope only for the halting of my MS, I was curious, based on the fact that I had so much enhancement in the lesions of my brain, if I could expect any kind of reversal/improvement in my symptoms.  He said, without hesitation, “Yes!”  He said that there is a potential for 50-60% reversal.  Those numbers may seem small to you, but when I had 50-60% less symptoms in the past, no one even knew that I had MS.  That’s how much of a difference that could make in my life.  Ok, getting teary…  I want to make it very clear that there is no guarantee what percentage of reversal I will see, or which of those symptoms may be positively affected, and I’m excited to see if/when which ones do.  He also stated that you would see the majority of that reversal within the first two years, and possibly beyond that.  He is adamant, when discussing the “during and after” of this treatment, that you will have better success if your heart and mind are involved in the process with a positive outlook.  No problem Dr. F.!  Bring on the pom poms!!!

I was able to make it out of the building today and had a chance to take some pics of the hospital (below).  The grounds really are lovely.  Take a look at my castle golden.  But, until the gates are open, I just wanna feel this moment… Thanks, everyone.

The gates to freedom.

The gates to freedom.

A grand facility.

A grand facility.

A shot of the grounds.

A shot of the grounds.

My castle golden.

My castle golden.

Not a clue.  Just thought it was cool.