Celebrate Good Times…Come On!

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dallas interview 2

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

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

During our ABC interview.

Click photo to see Sheli's CBS nterview.

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

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

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

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

Me with the Ninja Extraordinare, Amy Peterson

Me with the Ninja extraordinaire, Amy Peterson

Vicki & Kristy

Vicki & Kristy

Kristy, Amy, Sheli

Kristy, Amy, Sheli

Vicki and I at Toulouse

Vicki and me at Toulouse

Me and Lisa

Me and Lisa

Me with Kristy

Me with Kristy

NYLO Lobby Bar

NYLO Lobby Bar

NYLO  Entrance

NYLO Entrance

NYLO  Entrance

NYLO Entrance

NYLO  Rooftop Pool

NYLO Rooftop Pool

NYLO Library

NYLO Library

Bubbly Sunset

Bubbly Sunset

This Opportunity Comes Once in a Lifetime

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This Opportunity Comes Once in a Lifetime

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

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

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

 

healthcare elsewhere for blog

 

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

Send the Call Out…Send the Call Out…

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Send the Call Out…Send the Call Out…

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

vicki video

Vicki Wilson’s interview with Good Morning Arkansas

kristy 60 minutes

Kristy Cruise’s interview with 60 Minutes Australia.

 

 

 

 

 

 

wtaj interview

My WTAJ-TV-10 Interview with Diana Rees

Carol’s Radio Interview

 

 

 

 

 

 

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

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

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

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

 

brandon and me

Keeping Calm with Brandon!

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

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

Peace and love from the Pennsylvania countryside.

 

Sweet Dreams are Made of This…

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Sweet Dreams are Made of This…

Happy New Year to all!!!

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

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

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

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

Recovery Update

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

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

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

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

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

Looking forward to a new year and my new life!

Cheers to 2014!!

Peace, love and a Happy New Year!!

Brooke

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

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

MRI NEWS

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

RECOVERY NEWS

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

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

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

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

I've put a spell on my MS!

I’ve put a spell on my MS!

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

Hair 5.5 months post-transplant.

Hair 5.5 months post-transplant.

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

MY POM POMS

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

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

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

WHAT’S UP NEXT?

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

I’m Blue da ba dee da ba die…

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I’m Blue da ba dee da ba die…

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

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

The Blue Devil - Mitoxantrone/Novantrone

The Blue Devil – Mitoxantrone/Novantrone

The Snack Bar

The Snack Bar

The Fantabulous Nurses

The Fantabulous Nurses

Me and my Kindle during chemo.

Me and my Kindle during chemo.

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

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

Shock the Monkey

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Shock the Monkey

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

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

Good Attitude

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

Physical Therapy

Shock the Monkey!

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

Owey!

Balance Board

Toes to Nose

Command Central

HealthSouth Rehabilitation

Good Food

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

Additional Improvements

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

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

Miscellaneous

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

Comeback!!

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

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