Tag Archives: transplant

Feb12

Hello from the Other Side…of Recovery

Posted on by
Standard
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/

 

Jun17

Celebrate Good Times…Come On!

Posted on by
Standard
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

May29

This Opportunity Comes Once in a Lifetime

Posted on by
Standard
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!

May31

The Sweetest Goodbye…

Posted on by
Standard
The Sweetest Goodbye…

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

Me & Dr. Fedorenko

Me & Dr. Fedorenko

Just a little excited!

Just a little excited!

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

Me, Mom & Dr. Fedorenko…HALTING MS!!!

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

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

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

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

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

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

A shout out to the Moscow Momma!

A shout out to the Moscow Momma!

Just waiting on a cab, and a new future.

Just waiting on a cab, and a new future.

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

May27

Ain’t No Lie, Baby, Bye, Bye, Bye…

Posted on by
Standard
Ain’t No Lie, Baby, Bye, Bye, Bye…

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

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

LET’S GET BACK TO THE HAIR!!!

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

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

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

Ain’t no lie. Baby, bye, bye, bye!

A shiny side-shot!

A shiny side-shot!

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

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

MY NUMBERS ARE IN!

Leukocytes – 31  Platelets – 73  Hemoglobin – 112

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!!

May17

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

Posted on by
Standard
Can You Kneel before The King and Say “I’m Clean”?

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

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

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

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

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

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

My body cleansers.

My body cleansers. Notice the pink duct tape labels?

Sterile gauze pads that you soak and wash with.

Sterile gauze pads that you soak and wash with.

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

Mouth gargle, that is used after each meal.

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

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

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

Me in my fresh, floral hospital gown. Fabulous!

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

My nemesis. The Cuff!

My nemesis. The Cuff!

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

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

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

May15

Let’s Party Like it’s My Birthday…

Posted on by
Standard
Let’s Party Like it’s My Birthday…

Drink Bacardi, like it’s my birthday…

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

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

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

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

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

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

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

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

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

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

THE TRANSPLANT!

Pre-transplate mood tunes.

Pre-transplant mood tunes.

Waiting for the stem cells and prep.

Waiting for the stem cells and prep.

Dr. Fedorenko checking on the stem cell delivery.

Dr. Fedorenko checking on the stem cell delivery.

Prep cart.

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

The stem cells arrive!!

The stem cells arrive!!

Vitals are in check!

Vitals are in check!

Transplant accessories?

Transplant accessories?

Stem cells are warmed in a bucket.

Stem cells are warmed in a bucket.

Tranplantation in action.

Transplantation in action.

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

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

THE CHEER WAVE HEARD AROUND THE WORLD…

Where the Wave began. In my room in Moscow.

Where the Wave began. In my room in Moscow.

Vicki Wilson, St. Augustine, FL

Vicki Wilson, St. Augustine, FL

Sandy Wolford, State College, PA

Sandy Wolford, State College, PA

William & Harry, wherever they want to be!

William & Harry, wherever they want to be!

Patty Chwatek, keeping the wave going at Planet Fitness

Patty Chwatek, keeping the wave going at Planet Fitness

My husband's NESL blacktop crew!!!

My husband’s NESL blacktop crew!!!

Margaret O'sullivan from New Jersey.

Margaret O’Sullivan from New Jersey.

Lesa Lashinsky from Hollidaysburg, PA

Lesa Lashinsky from Hollidaysburg, PA

Lauren Abbot & Friend from Minnesota

Lauren Abbot & Friend from Minnesota

Kristy Cruise from Gold Coast, Australia.

Kristy Cruise from Gold Coast, Australia.

Mick, helping me get some satisfaction.

Karen Frederick doing the jammy wave in Woodbury, Pa

Karen Frederick doing the jammy wave in Woodbury, Pa

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

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

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

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

Autumn's awesome yoga Wave...

Autumn’s awesome yoga Wave…

Alison Elder waving it up in Tyrone, PA.

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

Adam doin' the Wickel Wave!!

Adam doin’ the Wickel Wave!!

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

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

Tuck Russel doing the canine wave.

Tuck Russell doing the canine wave.

This little one is helping me reach for the stars.

This little one is helping me reach for the stars.

The Altoona Chorus Wave!!

The Altoona Chorus of Sweet Adelines International Wave!!

May8

Would You Still Call Me Superman…

Posted on by
Standard
Would You Still Call Me Superman…

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

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

Apheresis Survival Kit

My Leevi Steele t-shirt and a Depends!

My Leevi Steele t-shirt and a Depends!

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

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

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

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

1st day apherisis.

1st day of apheresis.

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

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

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

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

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

Hickman line.

Hickman line.

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

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

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

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

Kryptonite

May6

Walk this Way…a 4-Day Update!

Posted on by
Standard
Walk this Way…a 4-Day Update!

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

FRIDAY, MAY 3RD

Solumedrol – High-Dose Steroid:

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

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

Stimulation Injections:

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

SATURDAY, MAY 4TH

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

SUNDAY, MAY 5TH

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

MONDAY, MAY 6TH

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

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

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

My name and info on my door.

My name and info on my door.

Corridor into room with fridge, microwave and serving area.

Corridor into room with fridge, microwave and serving area.

Air filtration system.

Air filtration system.

My computer/eating area.

My computer/eating area.

Hmmm. Don't want to know.

Hmmm. Don’t want to know.

The shower.

The shower.

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

Jan17

I Get Knocked Down, But I Get Up Again…

Posted on by
Standard

You’re never gonna keep me down!

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.