That’s right! Last week, I had a triple MRI. All scans are and have been 100% stable since my HSCT in 2013. The last brain MRI I had was 2.5 years ago and the last MRI of my spine was over 7 years ago, just after transplant. I’m not gonna lie. I was nervous about the spine. Any symptoms of mine that have ebbed and flowed over the years have typically been rooted in my cervical or thoracic spinal lesions. Since my cranial surgery in January for trigeminal neuralgia, a bout of shingles and the flu that followed soon after, then COVID lockdown, I’ve been physically weaker than I’ve ever been. My core, my legs, my feet…all shot to hell! Who knew all the walking while shopping I do (DID pre-COVID) helped to maintain a much stronger me. Yes, I could be exercising more at home. Yes, I could be walking more…in my yard, but I haven’t. Now that I know my weakness isn’t from MS progression, I’ve got to get off my lazy ass and get to work! And binge-watching Netflix doesn’t count (bummer).🙄
I realize HSCT is not for everyone. But, it’s currently the most durable treatment to HALT (not just slow) the progression of MS (and other AID).
If you’re interested in more info, I’ll be happy to guide you in the right direction. If not, I wish you all the best in your MS journey. I’ll still be here cheering you on.
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 websitewww.brookeslick.com.
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
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 theperfecttime 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 creatingyour 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 tacklingvanity, 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, PLEASEgo 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.
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.
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”
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…
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 PHYSICAL 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 GO
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
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 SHORT 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, THERE ARE A FEW WITH WHOM YOU’LL BECOME VERY CLOSE. 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.
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.
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.
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.
Completed physical therapy 7 months early.
Encouraged other HSCT patients, like Diana Rees, who is now a veteran!
Drove 15 hours each way to pick up Sochi, a rescue cat, in Atlanta.
Kissed my last of 4 extra doses of chemo goodbye!!
No more “blue devil” (chemo).
Flew solo to Dallas to meet my SOFA sisters.
Kristy, Amy, and Sheli
Me with Lisa
Me with Vicki
Walked without a foot brace for the first time in 2.5 years
Danced at my daughter’s wedding
She was beautiful
My podcast interview was published in an international best-selling book.
Gave a presentation at a local college and senior center. More on tap for 2015.
Got back to having fun and celebrating with friends.
A pink toast to life!
Continued to maintain a Russia HSCT for MS, etc. FB forum page with veterans Jeff Root, Tammy Richert and Vicki Wilson
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.
– 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.
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.
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.
During our ABC interview.
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, 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!!
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.
Until my next blog post…peace and love from the Pennsylvania countryside!
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.
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.
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”.
Cheese balls with ham and melted cheese inside. Delish. Love the presentation!
The restaurant, Sole Mio!
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…
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.
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.
To restaurant.
Restaurant entrance.
One of the many restaurants at Best Western Vega Ru
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.
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.
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. 🙂
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
Just a little excited!
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.
One of the cleaning staff who was always practicing her English.
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!
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!
A shiny side-shot!
I couldn’t resist this bald-headed Charlie Brown cartoon. Crack me up!
MY NUMBERS ARE IN!
Leukocytes – 31 Platelets – 73 Hemoglobin – 112
SIDENOTE: TODAY 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!!
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. Notice the pink duct tape labels?
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 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”. 🙂
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!
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!!
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-transplant mood tunes.
Waiting for the stem cells and prep.
Dr. Fedorenko checking on the stem cell delivery.
Prep cart. Is that a lobster pot I see? Hmmm.
The stem cells arrive!!
Vitals are in check!
Transplant accessories?
Stem cells are warmed in a bucket.
Transplantation in action.
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.
Vicki Wilson, St. Augustine, FL
Sandy Wolford, State College, PA
William & Harry, wherever they want to be!
Patty Chwatek, keeping the wave going at Planet Fitness
My husband’s NESL blacktop crew!!!
Margaret O’Sullivan from New Jersey.
Lesa Lashinsky from Hollidaysburg, PA
Lauren Abbot & Friend from Minnesota
Kristy Cruise from Gold Coast, Australia.
Mick, helping me get some satisfaction.
Karen Frederick doing the jammy wave in Woodbury, Pa
The Peters boys doing a double wave from Erie, PA.
Clair Peters doing her very first wave. She’s already got it down!!
Autumn’s awesome yoga Wave…
Alison Elder-Bonsell waving it up in Tyrone, PA.
Adam doin’ the Wickel Wave!!
My 611 co-workers waving on my stem cells. Love them!!
Tuck Russell doing the canine wave.
This little one is helping me reach for the stars.
The Altoona Chorus of Sweet Adelines International Wave!!
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!
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 of apheresis.
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.
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.
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…
For those of you who may be following along in hopes of possibly having HSCT, please know, that somewhere along the way. you may be met with resistance. Not from just strangers, but from medical professionals that you’ve come to trust and respect. In particular, if you’ve been the type of patient who has always played by the rules. Is their ego bruised because they were unable to sufficiently help you under their care? Is it the money that they may stand to lose if you are no longer in need of their services? Whatever the case, you need to keep your chin up and remind yourself, that you didn’t want to do this, but the certainty of knowing what will happen if you don’t, is what drives you to this next logical step.
I’ve already hit a couple of bumps in the road with my own neurologist and my own primary care physician. As part of the “maintenance” protocol of this treatment, it is recommended that you become acquainted with a hematologist who can monitor your bloodwork upon your return. Sounds simple enough. However, some doctor’s offices require a referral from a doctor, in order to be able to access your records. Not a problem. I’ll just call my PCP. I’ve already discussed with him, in detail, the fact that I’m getting the transplant done in Russia and he told me to “keep me in the loop” and “let me know how things go”. So, imagine my dismay when I called him for the referral to the hematologist and he said that he wouldn’t do it because he didn’t order the transplant. Can you say “I’m not getting my hands dirty!”?. Well, when Miss Play by the Rules hits a roadblock, she sends a single text to a best friend, whose brother is friends with the hematologist. Within hours, the hematologist’s office is on the phone with me and, given that I’m not just a chemo patient, but a transplant patient, they kindly referred me to a hematologist/transplant specialist in Pittsburgh, who said that they “would be happy to see me”. Na-na, na-na, boo boo, Mr. PCP!!
Next up, my neurologist of 13 years, whom I absolutely adore and respect, has his nurse call me to say that, “Since you’re seeking treatment outside our facility, that there is no reason for him to see me at my February appointment, and if I did, it would solely be to measure my level of disability…period.” She proceeded to tell me that it’s very difficult to get an appointment with him (Oh, gee, really? Now it’s a favor to see me?!!). In the blink of an eye, I became a number and not a patient/friend. I was so taken aback, that I couldn’t speak and the next thing you know, I’m crying to her and telling her that it didn’t sound like him at all…and it doesn’t. I know that he doesn’t agree with the treatment (even though he said it would definitely “stop new lesions/activity”), but he specifically told me that he “would be there for me and he would continue to be my neurologist”. I plan on holding him to that!
The moral of this story is that some doctors will try to make you feel guilty, some will try to sidetrack your efforts, and some “will be happy to see you”. If this treatment was FDA-approved and available to the public at large in the U.S. in less than the expected 10 years for approval, I would do it!! Don’t beat me up over it!
In the meantime, and in the words of Chumbawumba…Don’t cry for me, next door neighbor. Onward.
Drama
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.
YSICAL 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!
HORT 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.
THERE ARE A FEW WITH WHOM YOU’LL BECOME VERY CLO
SE. 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.
Hello, Russia! B-bye, MS! 