Hello from the Other Side…of Recovery

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Hello from the Other Side…of Recovery

 

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

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

Letter to My Newly-Transplanted Self

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

Drama

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

Honeymoon

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

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

No Pain, No Gain?  Physical Therapy

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

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

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

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

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

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

Let’s Keep This Short – Followup Chemo

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

Fancy Shoes

no brace

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

Stop the Train…I Want Off – Revaccination

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

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

You Say You Want a Revolution…The Russia Facebook Forum

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

Thank You for Being a Friend

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

Did That Just Happen?

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

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

Shit on a Shingle(s)

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

Paying it Forward

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

The Big Reveal

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

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

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

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

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

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

CHMPAGNE

 

RESOURCES:

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

MY FAVORITE POST-TRANSPLANT BODY STRETCH/STRENGHTHEN/BALANCE WORKOUT (HULA HOOP)       http://www.fxpfitness.com  (videos on YouTube)

 

The Best is Yet to Come…

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The Best is Yet to Come…

Happy New Year!!

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

blog stats map 2014

 

My 2014 Checklist – In Pictures

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

My Recovery Status

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

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

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

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

hand spasticity

 

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

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

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

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

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

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

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

My Outlook

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

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

As always, peace and love from the Pennsylvania countryside.

Brooke

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

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

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

Healthcare Elsewhere – Inspiring Medical Tourism Success Stories.

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

healthcareelsewherebook

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

Celebrate Good Times…Come On!

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dallas interview 2

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

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

Click on the photo to view the ABC interview.

Click photo to see Sheli's CBS nterview.

Click photo to see Sheli’s CBS 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, 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.  I’ve created a collection of those appearances and they are listed below for you to view and share.  Click on them and they should take you directly to the source of the interview.

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