Monthly Archives: May 2013

The Sweetest Goodbye…

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The Sweetest Goodbye…

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

Me & Dr. Fedorenko

Me & Dr. Fedorenko

Just a little excited!

Just a little excited!

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

Me, Mom & Dr. Fedorenko…HALTING MS!!!

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

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

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

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

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

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

A shout out to the Moscow Momma!

A shout out to the Moscow Momma!

Just waiting on a cab, and a new future.

Just waiting on a cab, and a new future.

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

I Can See Clearly Now, the Rain is Gone…

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I Can See Clearly Now, the Rain is Gone…

VERY BIG, UNEXPECTED NEWS, TODAY!!

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

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

MORE ON THAT CATH REMOVAL!

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

My subclavian cathether line.  My new BFF!

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

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

Peace, love and healing…from Moscow.

The Sun Will Come Out…Tomorrow

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The Sun Will Come Out…Tomorrow

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

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

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

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

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

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

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

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

Peace, love and steroids, from Moscow.

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

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

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

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

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

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

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

Peace and love from Moscow.

Ain’t No Lie, Baby, Bye, Bye, Bye…

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Ain’t No Lie, Baby, Bye, Bye, Bye…

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

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

LET’S GET BACK TO THE HAIR!!!

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

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

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

Ain’t no lie. Baby, bye, bye, bye!

A shiny side-shot!

A shiny side-shot!

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

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

MY NUMBERS ARE IN!

Leukocytes – 31  Platelets – 73  Hemoglobin – 112

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

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

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

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

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

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

Amy Peterson, Texas, Trailblazer

Phoebe Scopes, England, Trailblazer

Tammy Reichert, Washington

Brooke Slick, Pennsylvania

Linda Stallings, Oklahoma

Vicki Wilson, Florida

Kristy Cruise, Australia

Jane Stratton, California

Sheli Godbold Smith, Texas

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

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

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

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

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

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

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

TODAY’S STATS!

LEUKOCYTES – 28 = ENGRAFTMENT

PLATELETS – 64 = ENGRAFTMENT

IT’S TIME TO PUT THOSE TURBINES TO WORK!

What a Feeling! Being’s Believing…

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What a Feeling!  Being’s Believing…

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

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

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

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

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

MY NUMBERS ARE IN!!

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

HAIRS TO YA!

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

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

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