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.  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.

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.

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.

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.  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!

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 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 a difference a day makes here in Moscow.  And, I mean a BIG difference.

For those of you who know me, personally, and now for those who don’t, it’s no secret that I’m not the most patient chickadee in the hen house.  When I get something in my sites, I’m going to get it, and you won’t find me piddling around to wait for it.  I’m going to take care of it myself.  SET THE GOAL.  REACH THE GOAL.  DONE!  Who knew that my personal style of living would resonate into this medical adventure to rid myself of MS, but it has served me well during my stay.  Seriously, there’s really only so much that I can control with this leukocyte situation.  I can be as stubborn as an ox, but if my leukocyte numbers don’t feel like rising, it’s not like I can put the smackdown on them.   You simply must wait.  Wait is a four-letter word to me.  Grrrr.

Yesterday, my leukocyte levels were at .28, with an optimum goal for engraftment of 1.0…SET THE GOAL.  About an hour ago, Dr. Fedorenko arrived with my results (earlier than normal).  He said that my leukocytes were now at .23 (lower than yesterday).  My heart sunk.   I said “.23!!!  That’s lower than yesterday!”.  He replies “No, no, no, they are 2.3!”  The original goal, which he did not think I would reach for 2 more days was 1.0…REACH THE GOAL.  Not only did I reach my goal, but I more than doubled it in one day’s time.  DONE!   Don’t think for a moment that I’m taking credit for all of this.  With a cheer squad like I have, there’s no way I wasn’t going to reach that goal.  But, who knew it would be overnight?!

On the turn of a dime, everything changed.  He continued to ramble on that my isolation would end tomorrow, they would return my clothes to me tomorrow and that mom would now be able to visit, again.  She will have to wear a mask.  I will not.  Then, another lifestyle changing statement was made by the good doc.  He turned around and said “And, we will be shaving your head, tomorrow”.   Looks like I’ve finally got that date with Nurse Hatchet.  It works out perfectly, because then I will have access to the hats and scarves that I have in my luggage.  Of course, I will be featuring the “hair raising” event on tomorrow’s blog post.

Then what?  He said that beginning Monday, the 27th, they will begin reducing immune-supportive medications for about 4 days in order for my new immune system to thrive on its own.  I will then receive my first of 4 infusions of Rituximab, which, normally, all of his patients receive only one infusion, here, before they depart that targets B-cells.  Due to my history of MS that has been a non-responder to 4 typical MS drugs, I will be receiving 3 more of those infusions back in the States.  It is not mandatory, but it will help to keep any rogue B-cells from getting any crazy ideas about trying to take the lid off of my MS seal.  Basically, it is a triple-precaution, that is not mandatory, but wise.  It’s an additional 15 hours of my life within this year, that I’m sure I can squeeze in some kind of shopping trip to ease the inconvenience of it. 🙂  No matter the case, the MS will be halted when I leave this hospital and before I get those infusions.

By the end of next week, I will be getting released from the hospital a little ahead of schedule, and mom will be helping me to navigate the streets of Moscow in search of souvenirs, and a normal meal.  I will be weak, and the doctor says that dizziness/weakness will remain for up to 3-6 months due to the side effects of chemo.  Some of my MS symptoms will worsen before they improve due to the residual inflammatory issues that come with chemo.  But, I already knew all of this.  So, yes, I will be taking my time next week.  I have a small checklist of places I would like to go and they can all be reached by cab.

As far as my current symptoms go…for almost five days, I have lived without the MS Hug that has plagued me for years, and, when I have sporadic reprieves from my chemo weakness, my right foot continues to try to fight its way back into its correct position.  Also, clonus, which can cause an uncontrollable trembling of my feet when I place the “ball” of my foot on the ground, has begun to dissipate.  Small symptoms.  Huge to me.

I’ll leave you with this.

In the words of Blondie…I’M NOT THE KIND OF GIRL WHO GIVES UP JUST LIKE THAT!

Oh, what a glorious day in Moscow!   No cloudy skies could possibly dampen this day.  THIS IS THE DAY THAT MY LEUKOCYTE NUMBERS HAVE BEGUN TO CLIMB!!  This is the beginning of the engraftment period in which my stem cells will begin to hone into position and set up camp with my new MS-free immune system.  Dr. Fedorenko predicts complete engraftment with 2 days. The goal leukocyte level is 1.0 for complete engraftment. We had already met this morning, but the numbers weren’t in yet, so, I showed him my new trick.  I leaned over my tablet, gently swished my fingertips through my bangs and a flurry of wisps of hair came floating down like snowflakes.  His eyes twinkled over his face mask and you could see that he was grinning.  His voice rose and he said “I predict, when I get your bloodwork results today, engraftment will have begun!”  He says that he will return in 30-45 minutes with the results.  When he returned, he told me that my levels had climbed from 0.12, yesterday, to 0.28, today and that, in fact, engraftment had begun.  He reminded me that the normal range of engraftment takes place within 7-10 days and mine should land at 8.  He also let me know that my platelet levels would now be adequate enough that I would not require any platelet infusions..  Yay!  To avoid the risk of a cut, he would still like me to wait to have my head shaved.  So, in the meantime, I will be playing “Lunch Lady”(see pic below)  in my room for a couple of days.  Like I’ve said…”Everybody looks good in blue.”

The Lunch Lady!!

– Hemoglobin
– Leukocytes
– Platelets

As far as my state of health.  I remain weak, but in very good spirits. All vitals are phenomenal.  Appetite is fantastic.  No pain or discomfort…AT ALL.  To date, not a single pain medication taken short of the surprise shot in the rump for a headache that was completely uncalled for.  I still struggle to get enough sleep at night, but am trying to make up for it with daytime naps.

The nurses now give me a two-handed fist pump when they show up to do my bloodwork and IVs in the morning.  I, of course, return the gestures.  Team spirit is contagious!

Please take a moment to celebrate with me today with one of my favorite Gloria Estefan dance tunes called “Higher” by clicking on the graphic below.  It’s perfect for the occasion and it gets my blood pumping  every time and gives you an idea where my spirits are at the moment.  Woo hoo!  Step it up and go “higher”!!

That’s right!

MY RESULTS ARE IN!  My leukocytes have dropped to 0.12.  Just what we were looking for.  And, we’re not done yet.  My platelets have also dropped to 15 (yowza!)  He did mention that in 4-5 days, if my platelets remain low, I may require a transfusion to bolster those.  Whatev!  Just let me know when to be ready.

– Hemoglobin
– Leukocytes
– Platelets

His visit with me today centered around this progressing neutropenic stage and what types of symptoms that I may experience.  He has recommended that I rest all day today, and I plan to do so.  Maybe that’s because he caught me sleeping when he walked in.  Two hours of sleep a night is not going to cut it.  He said that I will experience extreme fatigue, which is normal.  I am to be very careful not to cut or bruise myself.  He said that my MS symptoms will continue to worsen, but that will subside.  I am also to be very mindful of the cleansing regimen, and to just use common sense when it comes to any kind of cross-contamination of items that I touch.  .  Not there’s any chance in hell that there are any germs in this room.  They just came in and mopped down the walls, floors and windows with a thick antiseptic  cleanser, changed the bed linens as they do daily and, of course the antimicrobial light is always on in my bathroom.

He continues to be pleased with my blood pressure levels (though sometimes lower, but that’s just me), my temp remains normal or slightly below normal range.  I’ve lost about 4 lbs in the last two days…expected.

The last part of my meeting with the doctor today what all about…HAIR.  After talking to my US comrades who recently had their HSCT here, they each had a story of their own about when the hair came out/off.  I think I wouldn’t have been too concerned if it weren’t for a story about “Nurse Hatchet”, who just swoops in with an “off with your head” look on her face, and before you know it, you’re a cue ball.  I didn’t relay that to Dr. F.  I just said “When do we decide to shave my head?”  He said that he would like to wait 4-5 days until I have engrafted and then they will do it.  He said that it is dangerous to do it during this phase of treatment, as one misstep could cause a cut, which could lead to infection.  My hair is hanging on like a bulldog, so, I’m satisfied with his answer.

Talk about small things tickling my fancy these days.  They just brought in the package with my new hospital gown for tomorrow morning.  I think it has PINK flowers on it!!  My favorite color is blue, and the gowns I’ve had so far have all had blue or purple flowers on them.  But every once in a while, a girls wants to feel “pretty in pink”.  My second little treasure this morning was the lemon slice that was decoratively served with my breakfast.  I carefully, placed it in a bowl in the fridge and now it will be  the cherry on the top of my homemade iced tea that I make each night.  That’s right.  A lemon has me feeling all giddy and pampered.  LOL

Today, is the only day that I’ve awoken to solidly cloudy skies in Moscow.  It definitely changes the hue of my room, but it certainly won’t dampen my spirits.  The sun has been shining through the window of my life since the moment I stepped into this facility, and that will linger for a lifetime.

Peace and Love.

Though my days have become rather mundane, there’s so much going on under the surface, it actually keeps me stoked as my numbers drop and this process of engraftment is soon to take place.  Well, at least, in a few days or so.  I want to explain why my leukocytes (leukocyte = t-cell) (see pic below) are dropping.  It’s because they are continuing to die due to the high-dose chemo.  In killing the t-cells, we are killing the MS that lies within the t-cell.  So for optimum depletion of the MS, the leukocyte numbers must go as low as possible so that my stem cells will be able to launch my new immune system with no defenders getting in their way.  I’m sure there’s some football analogy that would come in handy right now, but it escapes me.

This is a t-cell/leukocyte. My MS resides within my t-cells. That is why we kill them with chemo.  Nasty little bugger!

Over the last three nights, and for the first time since receiving my high-dose chemo before transplantation, I’ve begun to have night sweats.  Moscow’s “White Nights” have become Brooke’s “White Hot Nights”.  You wake up each night, soaked with sweat from the neck down and you repeat this two or three times.  Dr. Fedorenko said that is the chemo at work.  When we were discussing the fact that my appetite continues to hold strong, he reminded me that even though I am carb loading, the chemo is working at a way faster rate of speed  than my level of food consumption.  He also mentioned that though I’m mostly sedentary throughout the day, my body is actually in the process of running a marathon.  Therefore, he says I can expect to lose some weight during these next two weeks.   Perfect.  I’m five pounds more than when I walked in the door, and I’d be happy to get back to my fighting weight.

I continue to sleep for only four hours per night.  Two at the beginning of the evening and two in the morning.  The night sweats don’t exactly make for a solid night of rest.   When I’m able to, I try to take cat naps during the day.  The doctor is satisfied with that.

IMPROVEMENT…EXCITING!:

During this inflammatory period of time, overall, my symptoms have gone back to their norm, which should change over the next 3-6 months, but that could begin to change while I’m here.  My fingers are incredibly numb and lack dexterity and my legs are very weak, but I’m holding my own.  However, yesterday, a symptom that has plagued me for over four years, magically disappeared.  I have suffered from what is called “The MS Hug”.  It is a tight banding that wraps around your ribcage from front to back (like a charlie horse).  It feels exactly like wearing  a corset, making it difficult to take a deep breath, difficult to speak, difficult to sleep, and, interestingly, difficult to eat anything other than small portions of food.  The tightness often turns into a painful spasm over which you have no control.  Basically, you have to ride it out.  Could be five minutes…could be an  hour…could last half the day.

Upon admission to the hospital, I quickly came to find that the eating habits and timing of meals for Russia, vary greatly in timing and portion of meals compared to our U.S. traditions. (see pics below)  You are served breakfast at approximately 9:00 a.m. that consists of oatmeal, porridge or a square of scrambled egg casserole with two slices of bread.  At 12:00 noon, you are served a snack that typically consists of two boiled apples and/or pears, with a small side of meat (yes, tongue) and two pieces of bread.  Then at 2:00 p.m., you are served lunch.  Lunch is the biggest meal of the day here, and when I say big, I mean big.  Too big for this corsetted chick to eat without having to endure some major pain due to muscle spasms.  As much as I’m starving and need to eat to sustain my weight, I end up throwing most of it away, or pay the price in a couple of hours of pain.  Dinner is served at around 6:00 p.m. and is a minimal offering of rice soup and bread.  I supplement during the evening with the protein shakes provided by the hospital.  They’re just enough to get me through the night and he encourages drinking them to complement your overall health.

8-9:00 a.m.  Breakfast. Oatmeal, some kind of bologna and two pieces of bread with butter.

12:00 noon-Snack
Two boiled apples, two pieces of beef, one hard-boiled egg.

2:00 p.m. – Lunch
Vegetable soup, a boiled piece of chicken, tons of cauliflower and a chicken croquette…with bread.

That all changed two days ago.  Honestly, I didn’t even realize it the first day.  It was after yesterday’s lunch that I had downed like I hadn’t eaten in days and realized that I had no spasms, pain or distress at all…just a full stomach and a satisfied appetite that I realized what was going on.  That’s how this HSCT thing works.  It sneaks up on you  when you least expect it and leaves behind gifts that may seem so trivial to a non-MSr, but are like winning the lottery for someone who’s ever had to live like that.  This is huge for me.  No more eating my appetizer at a restaurant and then having to have them box the entire entree to take home.  Heck, I may even be able to have a side salad.  Imagine the possibilities!!  Yay!

JUST FOR FUN! (hair still hangin’ tough)

If you ever wonder how I look at 3:00 a.m., this would be it. This girl is on fire!!

MY LEUKOCYTE NUMBERS ARE IN!!!

They are the same as yesterday at 0.13.  He said that is completely normal, especially given that they had dropped a day earlier than expected in the beginning.  He said they will flatline within the next two days.  Otherwise, all of my other bloodwork is outstanding.  I remain very healthy, happy…and blessed.

You’ve finally gotten all of the proceeds together to follow through with your HSCT here in Moscow.  You’ve made all of your financial arrangements with all of your banks and credit cards.  You’ve let them know the timeframe in which you will be moving the funds around, the approximate amount of funds that they can anticipate being transacted and that it will be for hospital payment, lodging, etc.  Well, it sounds like you really have your act together.  You should be so relieved to have that taken care of.  I know I was.  You see, I had already been warned that basically every single international patient to date that has tried to make their first payment to the hospital using a credit and/or debit card, was declined for some unidentified reason that varied from patient to patient.  So, there was no way that Brooke was going to fall into that trap.  No way!  Huh-uh!

Admission day arrives, and one of the first tasks at hand is heading to the administrative/financial offices, accompanied by Dr. Fedorenko so that he can act as translator.  On this day, you will make your first payment of $1,000, which covers the cost of your initial week of testing.  MRIs, ultrasounds, bloodwork, xrays, urinalysis and CTs, if necessary.  All of the paperwork is properly filled out with your home address, etc., and, finally the credit card transaction is put into motion.  I remember sitting there so excited to see that machine spit out that little piece of paper for me to sign…not so much!  DECLINED!  They try it again…DECLINED!  Trying to remain calm, when all the while I’m thinking “BASTARDS!”, I whip out my Target card.  Target specifically told me that they no longer charge any additional fees for international transactions, so they were first on my hit list.  The transaction goes through seamlessly.  Thank you, Target.  I’ll be seeing you again, soon.  I immediately texted my husband and put him, his mom (a former banker) and my local bank staff on the case.  Ultimately, they rocked it.  But, don’t think anyone made it easy for them.

With that all taken care of, I breathe a sigh of relief and I am made aware that the next payment will be due after my official acceptance/agreement to obtain HSCT at Pirogov.  That payment will be approximately $23,000.  then, the final payment will be approximately $16,000.  No problem.  I got this!

I’m accepted!  I’m moving forward with stimulation shots, new meds and the works.  I am on my way.  Now, it’s time for that next chunk of change to be paid.   This time, in order to avoid having to wheel me through the underground tunnel to the other side of the hospital, they have one of their financial people come to my room with a portable credit card machine.  How considerate of them.  I bet they were thrilled to be getting their money.  But they didn’t.  DECLINED!!!  I was mortified, crushed, embarrassed and incredibly stressed, all at the same time.  I thought, wait a minute, let me at least show them that I have the funds in the account. I pulled up my bank account and there was no question that the money was sitting right there,waiting for the transaction.  Please note, that at no time, did they make me feel uncomfortable or pressured, and, I think when they actually saw the funds in the account, it went a long way to relieving their fears and mine.

How could this possibly be happening?  Me!  The planner, organizer, one-step-ahead at all times person.  The entire scenario turns out to be marred with twists, turns, miscommunications, lack of communication and way too many levels of fraud security for my own good.  First, even though my bank was told the timeframe that I would be here, I was not told that I had to tell them a specific time and date that I would be making the transaction.  We finally did nail that down, and, once again…DECLINED!  This time the culprit was not my bank.  It was VISA.  My bank card is a VISA debit card, which means that I can use it at any location that accepts VISA, just like a credit card.  It turns out that my bank was allowing it to go through and VISA was blocking it due to possible fraud.  My local bank, God love them, put the hammer down on VISA and now they have cleared my cards for the entire length of my stay.  My bank’s good.  VISA is good.  Sighhhhhhh!   And, on the eve of my transplant, no less.

I am now paid in full.  I owe not another cent!  Oh, wouldn’t that be a fabulous dream?  I, of course, feel compelled to review my bank account online to make sure that everything has gone through and I can finally get a good night’s sleep before this life-changing transplant, on the next day.  Sure enough, the transactions had all gone through…IN ADDITION TO $2,000 IN “INTERNATIONAL FEES”!!!!  WHAT!!!??  Yet another small detail that the corporate headquarters of my bank failed to tell me when I was arranging my pre-trip finances.  I immediately start making mental comparisons to the things that I could have done with that $2,000.  Mainly, paying it forward when I return home…a top priority of mine.  Then I get to thinking about the fact that we have been paying our hotel bill with that card, and taking cash out of the ATM with that card.  My head starts reeling.  I pop back into my bank account and don’t you know it.  We are being charged “international fees” to do so, and at this point, they add up to several hundred dollars.  Each ATM transaction is $8.00.  The fee for the hotel was about $200.

What had to follow was the dreaded text to my husband.  “Oh, gee, honey. You know that $40,000 stem cell transplant plus extra expenses that we have to pay?”  “Well, it’s going to be a boatload more than that!”  “Love you.  Kisses.”    No amount of smiley icons is going to make up for that text.  Well, I’m married to a saint, and he took it much better than expected.  I’ve been really lucky that my mom has become quite savvy with our finances on the outside.  She finds the best deals on food, etc., in the most unlikely places, and she takes great care to be frugal.  We are very mindful that a large marjority of this money that got me here was donated and we want to honor that generosity.

To all of you future Moscow HSCTrs.  YOU HAVE BEEN WARNED!  Even the best-laid plans can be de-railed.  Have a Plan A, B & C in place. Or, just pay for everything in Rubles (cash).  Not exactly convenient, but I suppose it could be done.

TODAY’S MEDICAL NEWS…

I woke up with much more energy than yesterday.  In the shower at 6:00 a.m. and ready to face another beautiful Moscow day.  Albeit, through my room’s picture window.  As far as symptoms go, during this period of time, they all worsen.  Don’t have a panic.  That doesn’t mean that there aren’t changes being seen.  They are just currently thwarted by the inflammation caused by chemo and the lowering of leukocytes and platelet counts.   All completely normal.  The patient and the MS must heal from the chemo, the transplant and all peripheral treatment.  My appetite remains hearty, though I was warned by the doc today, that I can eat all I want, but I will be losing weight because of the energy that the body is burning to compensate for the lack of WBC, etc.  Forget the technical stuff.  I feel great…happy…peaceful.

MY NUMBERS ARE IN…

My leukocyte level has dropped to 0.13.  He predicts that they will bottom out over the next two days and then begin to rise.   That is right on schedule and I couldn’t be happier.  He seems to be genuinely pleased with my body’s resilience, and I must say that I agree.

Today’s hemoglobin, leukocyte & platelet counts.

WISP WATCH!  NO MORE HAIR IS FALLING…YET!

As the days gently pass while in isolation, the routine allows for me to effectively plan my day, mostly, for no plans at all, and it is for this time that I’ve actually looked forward to, so that I might be able to give you a glimpse into what really makes me tick…who I am, why I’m here, how I got here, and why I remain so “strong, brave, committed” as so many of you have praised me for along the way. I appreciate the recognition, but, it’s not quite as simple as that. I didn’t turn into Superwoman overnight!

I know many of you following along are people “of faith”. Maybe you’re Catholic, or Protestant, or Jewish, or Buddhist. Faith is faith no matter how you slice it. Maybe you’re a non-believer. All are welcome in my world.

I was raised in the Protestant faith (Methodist), by the hand of strong-willed grandmother who wanted nothing more than her grandchildren to embrace the church, and, who now sits at God’s side. Add to that a Sunday school teacher, Albert Masood, Sr., whose teachings of over 40 years ago remain with me today and make for a very solid foundation of faith…unwavering, unquestionable faith.

Before you get carried away thinking that I carry my Bible in my purse every day and go to church every Sunday, you can just wipe that scenario right off the chalkboard. When my grandfather Warren passed away, at the funeral service, the pastor said “Warren was the most religious man I knew who never went to church!” That pastor hit the nail on the head with that remark and that is where my grandfather and I have so much in common! My grandfather also grew up in the church, but, as he grew older, he showed his faith through touching the lives of others, like taking such care of my grandmother’s every whim and the needs of their six children, caring for and taking in of family members, and in the end, making certain that every little old lady in town had the brakes and turn signals working on their cars for little or no charge (he was a retired mechanic).

I hold my relationship with God, so close to my heart that I tend to keep it just for myself. It is my happy place, and I don’t always want to share it. I’ve taken my faith with with me during my travels all over the world. Nothing says safe and secure more than having God and a quality Swiss Army knife in your back pocket. 🙂 Over the years, I have been approached by pastors, friends, family, all offering to have me come join their congregation. As much as I’ve appreciated those sincere gestures, I am 100% satisfied with the way I roll with my God and my faith. I’ll be honest. I have great difficulty walking into a church without tearing up. That’s how bad it is. It could be a wedding, a Christmas play, or a basket bingo. When I walk in, I get so overwhelmed by the fact that I’m in His house that it takes everything I have to keep it together. Yes, it’s true. I have a soft side! So, the next time you feel like asking me to a church “tea” or something, please don’t take offense when I decline. I’m just saving you from watching me break down when we walk in. ha ha

So, now, you must be like “Wow!, Brooke is way more “religious” than I thought”. No, I’m not. I just execute it in an entirely different way than you might. Or, who knows, maybe we have way more in common than you thought.

Here’s my philosophy on how I execute my faith. You will NEVER find me banging a Bible or throwing around the “Praise Jesus!” at every turn. Except, of course, if I’ve just had the most fabulous sip of Gascon Argentinian Malbec. Now, that is reason for a “Praise Jesus!”. He and God are the ones responsible for those grapes, right? You will never hear me say every day for every situation, “Well it’s all in God’s Hands.”, or “God will take care of it.”, or “Just pray and it will be okay.” There are certain extreme situations when every option available to you has been exhausted and there is nothing left but to leave it in God’s hands. In that I do believe. However, I feel and have always felt that this gracious gift of faith is no “free ride”. Do you really think that I’m over here expecting God to take care of every little thing while I just sit back and ride his coat tails?! Heck, no! I must do my part as well. I must prove how badly I want it and fight until there’s nothing left in me. It’s no different than getting a promotion at work. Just because you got the job, doesn’t mean that you don’t have to continue to earn your keep. That’s just a little more of my blunt, black and white, sensical take on life. Take me or leave me.

You may be wondering how my faith came into play when I was deciding and preparing for this rather extraordinary trip to Russia to save myself from my MS. It went a little something like this. I did the research. I knew it was the right thing to do and that I was going to make it happen, but, something inside of me longed for some kind of heavenly sign from my dad or from God. I didn’t have to have it to move forward, but it was definitely gnawing at me. Well, dad knows that I’m not that patient, and well, God knows…everything, so they humored me and gave me exactly what I was looking for. Dad (pic below) started “visiting” me when I would sit down to eat my breakfast, but, only if I was sitting in Doug’s chair at the island. One morning in particular, he came to me as soon as I sat down and, as clear as a bell I heard him say “You’re a Taylor (maiden name), and you can do this.” Well, that’s all I needed to hear. BOOM, DONE! Let’s book the tickets! God, on the other hand, visits me in the bathroom. I’m always deep in thought in front of the mirror, contemplating my day and he just kind of graces me with his presence. No visuals, no words…just a presence. And that’s plenty for me.

Dad’s words of wisdom…”You’re a Taylor, and you can do this!

Wow, man, this is getting soooo deep! NO IT’S NOT! Just hang on. It gets lighter.

So, who’s the everyday me? The one who mustered the guts to do this thang!? Here’s the deal. Much to my husband’s chagrin, I swear like a trucker. I’ve actually become quite talented at infusing swear words into multi-syllable words. The more syllables, the bigger the challenge. You try to live with MS for 10 years, and we’ll see if you aren’t slinging F-bombs on the daily. Just sayin’! Don’t worry, I keep my profanities within my domain. I know when to keep my mouth shut…sometimes. My family comes first. Work has always been a very close second. I have great friends who appreciate my sense of humor or all would be lost. I live a homemade country life while trying to infuse it with my big-city instincts. I’d like to think I have the best of both worlds…and I do.

Let’s get down to my medical status for the day. I slept for 4 hours last night…a record. It was only two at a time, but, I’ll take it. I woke up at 6:00 a.m., feeling fabulous, but weak (typical for this phase of the treatment). Get my shower, sit down to the computer, and, suddenly, I can feel my lights dimming. Not the ones in the room, but the ones in my head. I’ve passed out many times in my day, and this was it for sure. I took a deep breath and gingerly walked over to my bed and rang the nurses. I had already placed my head between my legs, pointed to the symptom sheet to let them know that I was dizzy and then they all switched into high gear. My BP was 85/48 and I was misting with sweat. They made me lie on my side, take my temp and start giving me IV fluids to assist with my electrolyte balance. They take an additional blood draw to check for infection/sepsis…it was negative. I was in no pain and not nauseous. This is simply typical and something that I need to pay close attention to and the utmost respect to in the process. Next up, Dr. Fedorenko is on the phone asking all of the usual questions and asking me to please rest until he gets to the hospital. After his examination, he once again says that this is to be expected, but to make sure to report any changes at all, and I will. The nurses just arrived with a battery of fluids to offset my little fainting drama (see the pic below).

This is what you get when you get a lil’ woozy around here. Get the (!!!!!! ) out of my way. I have to go to the (!!!!!) potty! ha ha

NOTHING NEW TO REPORT ON THE WISP WATCH…SO NO PIC TODAY.

MY NUMBERS ARE IN!! MY LEUKOCYTES ARE DOWN TO 0.18, EXACTLY AS THEY SHOULD BE AND ALL VITALS ARE IN CHECK.

PRAISE, JESUS!!

Pre-testing, over.  Stim shots, over.  Catheter placement, over.  Chemo, over.  Stem cell transplant, over.  That went rather quickly, don’t you think? At this point of the treatment, EVERYTHING revolves around your daily blood test results.  I will have a blood draw early each morning, the results will be processed by early afternoon, while, behind the scenes, my meds will adjusted accordingly.  Only one of my lab results yesterday was out of range.  That of the liver, which Dr. Fedorenko said, based on me having taken so many MS immunomodulating drugs in the past  (Betaseron, Copaxone, Gilenya, Tysabri) and the fact that I had just endured chemo, that range was not alarming and that he has had patients with double that result in the past.  Otherwise, kidney function, as well as everything else was completely normal.  In hindsight, it’s crazy to think of all of the damage that I’ve done to my body by taking all the typical MS drugs.  That was also a contributing factor to why I was only able to get minimal stem cell collection on the first day of collection.  It’s my understanding that those drugs have an effect on your bone marrow.  Who knew?!  If the doc tells you to take something that will help to keep your MS at bay, at least in my case, I shut up and do what I’m told…for a while.  ha ha

If you’ll notice on the upper right sidebar of my blog, I’ve included a “Leukocyte Watch”.  At this stage of the game, that is what my world and level of isolation will revolve around.  The leukocyte levels will be indicative of the fragility and/or growth of my new immune system.  When the number hits 0.50, my level of isolation will change, as will the protocol that takes place in the room where I currently reside.  I will remain in the same room I have been for the last week, for the remainder of my stay.  However, my inner door will always remain closed unless to use the restroom and all who enter will be gowned up, masked up, and bootied up.  In addition, mom will no longer be able to visit (Look out Moscow, Connie’s on the loose!).

THE RESULTS ARE IN!!

Dr. Fedorenko just arrived to share with me that my leukocyte level had dropped to 0.47 and that my room’s protocol and I would be stepped up to the highest level of isolation.  By reaching this number, I have now entered the neutropenic stage of the treatment, which means that I will be living with a very low number of white blood cells in my system.  This increases my risk of infection and leads to my increased level of isolation.  This period will last approximately 7-8 days.  Over that 7-8 days, my numbers will first continue to drop.  By the end of that period, they will begin to rise, with the goal of 1.0 leukocytes, which will indicate that my stem cells have actually engrafted (taken hold) and are starting to rebuild a my new immune system.  He said that I had reached the goal of below 0.50 one day sooner than expected and, for some medical reason, that was a very good sign of successful results in the future.  Way to overachieve leukocytes!  You’re the best!

Dr. F. told me that within a few hours, the nurses would arrive to completely change out the linens in my room, scrub the room down, and me.  Yes, me.  At least for the first go around, they will be teaching me, with special solutions for each part of my body, exactly how to cleanse myself  for maximum removal of bacteria or other harmful germs.  I will then be able to wear only my underwear and a bra, with a hospital gown (I’ll post pics of that, for sure).  They will allow me to wear my socks.

As far as moving around my living areas (bedroom, corridor, bathroom), I must always keep my door shut.  When I go to the bathroom, the door must be shut behind me at all times.  I am able to access my food and drinks.  He said that the nurses will now be fully gowned, and masked when they enter the room.  I will once again begin receiving stimulation shots in the upper arm, once a day at 3:00 p.m.  I will also continue to receive two doses of protective IV fluids, twice a day.  As he reviews my bloodwork results each day, he will adjust my medications accordingly.  He said that I am also to pay keen attention to my symptoms from this point forward.  Any changes to temperature, digestive issues, dizziness, weakness, etc., must all be reported immediately.

And so we wait.  For seven to eight more days, I will be recording my leukocyte numbers as I receive them.  I think watching the numbers drop will be a bit more harrowing that the anticipation of watching them rise, as I know that one must come before the other, even with the risk involved in maintaining such a fragile state.

I realize this post is much more technical than those to date, but, I really want you all to understand as much as I do and be able to explain it to the best of my ability.  I’m not a doctor.  I’m just the messenger.  If my facts/figures seem a little off, maybe they are, but most of them are taken from his hand-written notes to me and detailed conversations regarding what I am to expect.

During this downtime, I will still be completely wired.  I am able to keep ALL of my electronics and headphones and rest my little heart out.  Time to heal.  Time to grow.  And, hopefully, time to touch a few more lives out there of people with MS, who think they’ve run out of options.  For me, that is what this blog is really all about.

Let’s lighten this up a bit.  Today, in the midst of the flurry of test results, consultations, instructions, my lunch came.  It included the usual 2 microwaved (or boiled) apples, which I’ve come to love.  You just scoop out the middles like applesauce.  It’s delish.  Well, as they always do, they throw on a piece of cow’s tongue, just to taunt me, I’m sure.  Today, I was feeling strong, brave, fierce and famished.  I doused that bad boy with salt and pepper and ate it like it was filet mignon.  It tasted exactly like roast beef and the consistency was the same as roast beef.  From now on, I’m all over the tongue.  Brooke wants more tongue!!  ha ha ha

Thanks all for hanging in there with me.  It’s going to be a long 7-8 days, but, we’ll get through it.  Mooooo.  🙂

Right?

Since our arrival in Moscow, I have had one good night’s sleep. That was the first night in the hotel. I usually only sleep 4-5 hours a night, anyway, but, after admission to the hospital, I found that staying in a deep sleep for any period of time was next to impossible. And, just about the time you think your body is back in sync; it’s time to start the 4 nights of stimulation injections at 11:00 p.m. and 3:00 a.m. It’s understandable that things could get a little off kilter. Since moving to the third floor (the bed is much comfier), I try to go to bed at 11:00 p.m., but find that I am only able to sleep for 2 hours…period. Then, I am up wide awake, and refreshed. It’s not like I feel miserable or worn out. I just can’t sleep. Add to that we are in a time of the year here called “White Nights”. I experienced a very similar situation when I was in Ireland around this time of year. It stays daylight forever. It could be 11:00 p.m., and it looks like it is 9:00 p.m. It never gets completely dark. So, fine. I’m not miserable, but I’m not stupid either. I know that I’ve just gone through four days of chemo and I’m about to have a stem cell transplant done, all of which is very stressful to the body. In an effort of self-preservation, I approached Dr. Fedorenko so see what he thought. He wasn’t really happy about the lack of sleep and mentioned that “Well, you are also very energetic” (using jumping hand motions). I think that was his kind way of saying “You’re a spaz! Try to not overdo it.” Ha ha He recommended sleeping pills, or that I try not to sleep/nap during the day at all and only sleep at night. I tried the not sleeping all day for one night. I was so exhausted I felt like I could sleep for two days. Nope…two hours. That’s all I got. Last night, I caved and took the sleeping pill. He swore that it would have no adverse, psychotic, crazy effects and it didn’t. But, I’ve decided they’re just going to have to get an elephant gun to bring me down. I did get about four hours of sleep, but I was up four times for potty breaks. Good news, this time, I was able to get back to sleep after each break. Dr. F. reassured me that poor sleeping habits are common among chemo patients and not to worry, but, he wants me to be in tip-top shape for the big day tomorrow (Tuesday). I get my stem cells back between 1-2:00 p.m. (5-6:00 a.m. EST).

Chemo Craziness…or Not

After four full days of chemo, still no side effects. I felt a little dizzy this morning, but breakfast took care of that. I just had my morning consult with the doc and he asked me if I was feeling tired. I said “No.”. I truly do believe that I’ve functioned at such a lower level of energy for so long, that my interpretation of tired or not tired is skewed. I may look like I’m always running around like a maniac, but underneath it all, I’m just pushing four times harder than the average Joe. Is there an Oscar category for that? Dr. F. confirms that if I do start to feel fatigued from the chemo, it is completely normal. I don’t know why I’m having difficulty wrapping my head around the fact that I’m doing so well with the chemo. Am I grateful? Absolutely! But I have read and heard so many horror stories, and I have been fully prepared for the meltdown that may occur. Day after day, treatment after treatment, I seem to be responding beyond expectations. Of course, the attentive care that I’m receiving plays a large role in the fact that I continue to thrive under such circumstances. My vitals are at their optimum…kidneys, digestive tract, breathing, BP, temperature, etc., are all unremarkable. In addition, I maintain a healthy appetite…maybe a little too healthy (thank you Spandex). Blessing, blessings and blessing all around! Yes, I always take the “expect the worst, and anything else is a gift” route, but, this is pretty mind-blowing.

Let’s Put This Thing to Bed

I took my morning walk through the corridors continuing to test my new and improved foot. It continues to try to position itself properly. I took the walk with my trekking pole, but halfway through my stroll, I got cocky and started holding the trekking pole up in the air and walking without it…the entire way down the hall!! You got it!

If you all would like to join in the transplant pep rally, tomorrow, please set your prayer/good vibe alarms, phone or regular, to 5-6 a.m., tomorrow (EST), May 14. Hmm…I wonder if there is a cheer app on my/your phone? Nothing like a little “timely cheerleading”. Oh, and the chant will be “OFFENSE, OFFENSE, OFFENSE!”. ha ha The transplantation is a very intense procedure and will take every ounce of mental and physical agility I have in me to tolerate it. My plan is to focus on the prize while it’s happening. This IS the prize, and I don’t mind.

It’s a sunny, warm day here in Moscow. I may have to take my new toy out for another walk. Come tomorrow, no more outside until I’m released. Update — Just back from outside. It is absolutely gorgeous, and surprisingly, the freshly blooming foliage smells just like home. Awwww…

Rock on, people!

Today, in the U.S., we celebrate Mother’s Day!  We salute the ultimate caregiver.  I am going to take this opportunity to address a vexing and all-to-real dilemma/decision that each person who considers having HSCT will have to face when they decide when and where they will be treated.  I will concentrate solely on Piragov Hospital in Moscow, Russia.  I’m going to warn you ahead of time.  On the whole, I am very black and white in my own decision-making.  Problem, solution, done!  So, what may come across as blunt is my personal voice of reason.  I’m here in Moscow, now, and I’m going to help you decide whether or not you need to have a companion with you during your stay.

Questions We Ask Ourselves & My Answers to Those Questions:

Q.   Do I have a family member/friend who is able to sacrifice approximately six weeks of their time/income/own family to accompany you to a foreign country, and, can you afford to feed, house and transport them for that period of time?

A.    It’s going to cost you anywhere from $6,000-8,000 to house that companion, and that is at the very reasonably priced Best Western Vega Ru that is 3ish miles from the hospital and convenient to all transportation (metro to Red Square and points beyond), malls, delis, grocery stores, etc.).  TIP:  The AARP discount is generous and could save you a lot of $$$.  AAA may also offer similar discounts.  It’s going to cost that companion between $13-18 each way, via taxi, from the hospital to the hotel for 20-25 of those days, if you feel the need to have them there that often (get the calculator out!).  Dr. Fedorenko or his staff do arrange for the cab to take your guest back to the hotel (your cost).  The airfare almost slipped my mind.  Our tickets (Delta) were about $900 each from JFK (R/T) = $1,800.  Are your eyes rolling like a slot machine, yet?  How much to feed the companion?  For some crazy reason, the hotel room service is incredibly cheap, unless you’re ordering breakfast.  You can easily get a roast beef sandwich, fries and coleslaw for $6 sent right to your room.  You must pay, on the spot, in Rubles…no charging to the room.  The ample morning breakfast buffet is $15-18 and offers a plethora of American-style goodies.  So, if your guest is afraid to venture out to see this fabulous city (shame on them), they could essentially eat at the hotel the entire time (boring!).  Ok, that’s my summary on that.  You’ll have to run the totals.  I’m on my 4^th day of chemo and mathematics is not really high on the priority list for today.  Ha ha

Q.   Do I NEED to have someone here with me during this treatment?  In particular, checking in/looking after me at the hospital?

A.    HELL, TO THE NO!!  Once you are admitted into the hospital, you are 100% completely looked after, fed, rooms cleaned, linens changed, and if you need physical assistance of any kind at any time, the nurses are one ring and just steps away.  Forget the language barrier.  I think the hand gestures for “I’m going to toss my cookies” are universal.  Let’s not forget, during the length of your stay, every day (including weekends) there will be multiple visits from Dr. Fedorenko who checks in to see how you are doing and to keep you abreast of your test results and the next course of action.  He even supplies you with his e-mail and phone in case of emergency (like, taking a double dose of your pills…oops!)

The second portion of my answer is where the “blunt” begins.  Do you already know that you are not the type of person who could handle going to a foreign country by yourself, navigating to the hotel/hospital from the airport by yourself, being satisfied with spending hours alone by yourself?  If the answer is “Yes”, then you better get to fundraising, cashing out the 401Ks, IRAs, home equity loans and pay to have someone accompany you.  You’ll never make it out of the airport without blowing a cerebral gasket.  Just sayin’.  My point is, if the cost of bringing someone with you is a point of contention, or could possibly lead to you not coming at all, then you really need to do whatever necessary to meet your financial goals to make it happen.  But, if you’re like me, and you don’t care who, what, where you have to hurdle to rid yourself of MS, you could definitely take this trip solo, with no fear AT ALL!   BOTTOM LINE…DO YOU WANT TO GET RID OF YOUR MS OR NOT??!!!

SUMMARY:

At this point you might be thinking “Wait a minute, isn’t her mom there with her?”  Yes, she is.  By the grace of God and a community that is generous beyond words, she was able to come with me.  She is 72 years old and continues to work part-time at an art gallery (workaholic!).  IF you do have the means to bring someone with you, I can only hope that they will embrace this city and its culture as my mother has.  She has marveled at their work ethic, their artistry, their customs, and the grandness that this city offers.  She’s already navigated her way to Red Square via the Metro.  One of her favorite sites was the elaborately painted porta-potties, that you have to pay to use (go figure).  The attendants at the grocery stores know her.  I think they’re already calling her “Con” (her name is Connie).  ha ha  She has already befriended all of the cabbies at the hotel, the concierge, the bellhop and one fabulous attendant, Ana, who speaks English well and is always ready to help.  She already had a cabbie try to scare the bejeezes out of her with his crazy driving, and went so far as to make her sit in the front seat so that she’ll really feel it when her head hits the windshield.  What does she do?  She doesn’t grab the door handle and taps her fingers to the Russian music he’s playing on his radio.  PSYCHE! Mr. Russian cabbie!!  Suddenly, he slows down (she passed the test), and they’re BFFs.  As far as the things that mom has done for me while visiting me in the hospital, that have been great, but, if you’re on your own, you would survive, are the following:  tucked my blanket under my toes when they got cold during my stem cell collection; bring me food from the outside; reach for things for me if I was immobilized; take pictures of events.  Today, she’s bringing me pizza to celebrate Mother’s Day.  This trip is her gift.  Next year, she’s getting a potted plant.  🙂

So, on this Mother’s Day, I say kudos to all of our moms and/or companions, whether you need them or not.  I hope my take on the situation, at least here in Moscow, can help you to make some tough decisions.  But, seriously, can they be tougher than your MS?

🙂  Oh, and a shout out to my beautiful daughter, Carson, today.  Next Mother’s Day, I promise a marathon shopping day together!

For two crazy reasons, one late last night, and one this morning, there was a need to sound the alarm, or dial 911 or at least buzz the nurses’ station.

CRAZY REASON #1:

At 10:30ish last night it was time to take my nightly medication.  Well, if you remember, yesterday, I had taken a picture of my pill box and posted it on my blog to indicate the increase in the amount of meds that I’m be prescribed since we’ve entered the chemo phase of the treatment.  When I took that pic, I had the lids open to the box.  When I was done, I closed the lids and placed them back on my bedside table.  What I didn’t know was that the lids were not completely snapped shut and when I transferred them to the other side of the room, I tilted the box and all of the pills ran into the same section.  I had done all of that hours before it was time to take the meds and before a day long of chemo.  In the dark, I opened the appropriate lid, start downing all of the pills, and I get to the last one, and as soon as I swallowed it, I realized that I had taken way more pills than I remembered having to take.  So, I run to my phone to look at the pic of the box, and, sure enough, there were 6 pills in each section (I took 12).  When I realized that I had taken a double dose of everything, I instantly rang the nurses’ station and in the 20 seconds that it took them to get there, my life flashed before my eyes and I had visions of them having to pump my stomach out.  I was convinced that it was going to get really ugly, really fast. Two nurses arrived and I had to explain/charade what had happened.  One of the nurses did know a little English, so that was helpful.  They had to call the doctor at home, to ask him what he would like me to do, all the while,  I’m thinking, “Hurry, hurry, hurry, I’m ingesting this stuff!!”  They put Dr. Fedorenko on the phone with me and he explained that it was perfectly okay, that they were ½ doses of prophylactic meds and that there would be no harm done.  The nurses recommended drinking extra water, which I did.  The English-speaking nurse, picked up the “Symptoms List” which is in both English and Russian so that you can point and indicate what you are feeling.  She pointed to “Nausea”.  I shook my head “No”.  I took my phone out and used the Google Translate to ask her if there was a word for “Studipidity” on that list, and then pointed to myself.  She got quite a chuckle out of that encounter.  Dear God, Brooke…wake up!!!!

CRAZY REASON #2:

I woke up at around 3:00 a.m. (that’s become my norm), head to the bathroom, and noticed that the dexterity in one of the fingers of my right hand that has been losing mobility since last summer, is suddenly, no longer immobile.  I wiggled it around a bit, made a fist, shook it out, and thought, hmmm.  I’ll check it out in the morning.  I wake up at 6:00 a.m. this morning and while still in bed, notice that the finger is still functioning well.  I’m like, cool.  I decide it’s time to get moving and head to the bathroom for a shower, and notice that the foot that I usually drag along across the floor wherever I go, is actually lifting itself up and clearing the floor (I have been wearing a brace to help that foot clear the floor for over a year).  Ummm…okay.  Given my discovery, I decide to take a stroll around my room to see what’s going on.  The foot consistently tries to lift up.  I decide to keep calm and get my shower.  While showering, I discovered that the leg that I always have to lift with my hands to maneuver is lifting upon command, by itself.  Alrighty, then.  If you think this is good, it’s about to get better.  I get all shined up.  Heck, I even put some lipstick on, and decide that I’m going to take a walk up and down the halls to see what other little buds of improvement/change I might see.  First, I realize that it was much easier to maneuver out of my door.  It usually takes a twist and a pivot and a turn.  I get into the long corridor and notice that my right foot, which over the last two years has turned outward to accommodate a swing-gate that I acquired in addition to lifting my hip to have my foot clear the floor, has turned forward (the correct position) and the front of my foot (mid-foot to the tip of the toes) is lifting and clearing the floor without any effort on my part.  Mind you, it is still not the normal height that a person’s foot would clear the floor, but for me, and inch or ½ inch means the difference between and brace and no brace!!  Of course, I had to keep testing it, and before you know it, the muscles in my knee were starting to get strained.  Why?  Because they haven’t been utilized in that way for over two years.

Over the past two days of chemo, Dr. Fedorenko has asked me if I had seen any changes, to which my response was “No”.  Honestly, I really didn’t think that you would start seeing anything until after the transplantation.  It turns out I was wrong.  The chemo is already beginning to kill the T-cells that have been attacking my brain and spine, and it’s giving my body a chance to see if there’s anything left in the engine.

After all of these discoveries, I could not wait for my morning meeting with Dr. F.  I had a list and I made it in such a way that my improvements were on the bottom of the list.  It turns out that my internet went down right after all of this happened and I was crushed because I wanted to share the news with the world that miracles were happening here.  So, I went through my list with him and last on the list was “Internet down”.  I told him that I could not connect to the net and that today it was absolutely crucial to be able to reach everyone.  He asked why, and I proceeded to tell him that I needed to let everyone know that I’m seeing improvement in my functioning.  His eyes lit up and sparkled with curiosity.  I started tearing up and he thought something was wrong.  I told him they were happy tears and this was the best day ever.  We shared a hug and we went over all of the improvements.  He gave me his usual “Bea-u-ti-ful!” and headed off to see if one of his techy friends could fix my net.  I was able to get it going myself, and here I am, telling you, hope lives in Russia.  These may seem like really, really small things to you, but they are absolutely, potentially, life changing improvements for someone living with MS.  This is just the beginning.

Peace and Love…

As we roll down this unfamiliar road…

While this experience is new to me, I am so much at peace here, it’s almost eery.  Nahhhh…ethereal is more like it.  It’s as if I’m following orders that have no verbal directive, yet, I know exactly what to do next.  I suppose that’s what happens when you come to a place of complete trust and acceptance of your path.

What was next for today, was another day-long run of chemo/fluids/etc.  I got about two  hours sleep last night.  Not that I didn’t try to sleep, or that I was uncomfortable. I managed to wake up at 6:00 a.m., knowing that my first chemo run wouldn’t be until 11:00 a.m., so, I had plenty of time to just lounge around till breakfast (9:00ish), and get my shower in plenty of time for the chemo.  Surprisingly enough, I sat up in bed, and I felt really stellar.  Now, my version of stellar, may be your worst day, but, all things are relative when you have MS.  I felt a complete turnaround from 24 hours prior.  Given my newfound physical status, I thought I would jump (not really) into the shower to be ready before breakfast.  I did so, with ease (not so shaky/sore today), and just in time for my favorite nurse (nicknamed Bon Appetit by the 3MSketeers) to deliver my meal.  I had just taken my last bite at 9:30 a.m., when the IV nurse arrives all ready to go…1.5 hours early.  Of course, I didn’t question her, because I wouldn’t understand what she was saying, anyway, and figured the sooner we got started, the sooner it would be over.  Of course, Dr. Fedorenko arrived shortly after to explain that he wanted to run it earlier so that it wouldn’t interfere with my night-time schedule as much (thoughtful).  He ALWAYS wants you to know what, why, where, who, and when at every step along the way.

By the time all was said and done, I think I had six IV bottles of  meds, including chemo.  The infusion had made me sleepy, so I tried to nap for the last hour of it.  When the nurse arrived, I asked her if there would be more and what time.  She showed me on her watch in military time…5:30 p.m..  To date, I still have no side effects from the chemo, most likely attributable to the increase in meds (pic below), but the man at the helm says the chemo is cumulative and the effects will be as well.  My temperature currently stands at 97.5.

As I was lounging on the bed, one of the nurses, whom I’ve spoken with before, and knows a little English (she learned it in college), began to ask questions about where I lived…was it in the city or the country.  She described to me that she and her husband had an apartment in the city (she works 24-hour shifts), and a big house in the “village” where they have a garden and grow potatoes (she showed me the callouses on her hands).  As soon as she said that, I grabbed my phone and held my finger up as if to say “one minute” and I pulled up the pic below to show her where I lived.  The second I looked at the pic that is the view from our back patio (pic below), it was like a dagger through my heart, and I started to tear up.  That view is where I have found solace during my darkest days these past 9 years, and to see it, knowing that in the two weeks that I’ve been gone it is now blooming and more beautiful than ever, just hit me.  Yes, I’m that strong, warrior, where’s my machete, I’m gonna kick some MS butt woman, who thought nothing of venturing to Russia for a stem cell transplant, but I certainly don’t have a heart of stone, and this quick lapse melted mine.  We ended the conversation with me complimenting her and the staff on the wonderful job that they ALL do, and told her that other countries could learn a lot from them (I’ll be summarizing those observations in a post toward the end of my stay).  She thanked me, and went on her way with a smile.

Home…from my back patio.

At this point, I had about 45 minutes to take a walk outside (it’s 70+ and sunny).  I head downstairs, and realize that I had just been infused with six bottles of fluid and had only used the restroom once during that timeframe.  Suffice to say, it was a very short walk.

So, promptly at 5:30 p.m. the nurse arrives with two more bottles.  The bottles are smaller, but the drip is slower.  She makes an impromptu announcement that shel’ll be back at 10:30 pm. for one last round.  There goes that early date I had with my pillow.  These next two days of chemo serve as the perfect opportunity for me to just kick back, take naps, chill, and heal.  I don’t know, maybe if it wasn’t for the five days of high-dose steroids, two days of stem cell collection; surgery for catheter line placement, abdominal injections (Heparin), and two days of chemo that I wouldn’t have seen my emotional strength faltering today.  It’s like being in a car accident, and the day of the accident you feel fine, but the days following you feel like a huge bruise.  Speaking of which (pic below).

From first day of stem cell collection. That’s what happens when 800,000 stem cells course through your veins!! 🙂

All ramped up with protection!

Don’t let this post lead you to think that I’m drowining in my tears.  I just want to let you know that the tears I’m shedding are happy ones, not sad.  When I see that view, I see my future in it…and it is bright.  Hope is a powerful thing and I haven’t had any for so long, that it’s difficult to process.  NOW, WHERE IS THAT MACHETE OF MINE!!

Today (Thursday) is the day that we began to KILL my MS…with chemo.  Here’s how it works.  First of all, my MS does not reside in my stem cells.  It resides in my T-cells.  The chemo that I am currently being administered is killing off my T-cells that contain the MS abnormality, along with the rest of my current immune system.  Next Tuesday, when my recently extracted stem cells are transplanted back into my body, they will serve as the “rescue” team.  They will act as new “seeds” from which I will grow a new immune system that is free from MS.  We are wiping my immune slate clean, and starting over!!   I want to make one thing very clear.  If you do not utilize chemo, you will not obliterate the MS abnormality or your current immune system.   You may see similar treatments being touted around the world that may provide for just an injection of stem cells, but no chemo.  They are not valid/viable treatments.  Unless, of course, you only want to spank the MS, instead of beating it into submission.

My first run of chemo meds began this morning at 11:00 a.m. on the dot…that’s just how they roll around here.  For some reason, I thought it was only going to be for an hour or so…not.  It’s 4:30 p.m. and I’m still on the drip.  No biggy.  It’s not like I have any plans or anything!  ha ha  The chemo is not the first bottle of fluids that I received in this regimen.  I received other IV conditioning/protective agents (MESNA, etc.) as well as constant fluids so as to avoid having the chemo settle into the organs.  For safety’s sake, it must be constantly moving.  Almost forgot…During chemo, I also received a Heparin injection in the abdomen to avoid thrombosis.  In addition to all of the IV medication, the amount of pills that I will be taking four times a day, has been completely ramped up.  I used to take one pill twice a day.  Now, I’m taking seven or more every six hours.  These include antibiotics, anti-nausea meds, and a laundry list of preventive meds that keep my health one step ahead of the game and the chemo at all times.  That is their specialty here.

So, wow, Brooke, your first big chemo run.  How was it?  How about those side effects?  Any burning in the nose?  Change in taste?  Glassy eyes?  No, no, and no!  I’m convinced that I’ve been living with so many side effects of MS for so long, that nothing else really phases me anymore.  On any given day, I could wake up with something that is numb or dysfunctioning.  It’s just a way of life.  It’s serving me well here as I’m constantly waiting for the other symptomatic shoe to drop…and it doesn’t.  This is where my philosophy of “expect the worst and anything else is a gift” is playing out nicely for me.  And, let’s not forget the horror stories about having to use the restroom, accompanied by your IV pole, every 10 minutes while your chemo runs…NOTHING, NADA, ZIP!

I continue to remain cozily holed-up in my bright and cheery “box” in this world-renowned facility.  I want for nothing and I know that at the ring of a bell, a nurse will be at my door.  I’m not a bell-ringer, though.  I don’t want to be labeled the “needy American”.  ha ha

TIP OF THE DAY:  Shower Shields (see pic below)– today I had my first shower since having my Hickman line installed.  Before I came to Russia, and while Jeff and Tammy were still here, they described to me how you had to protect the line while in the shower.  Well, of course, the Google queen knew that there had to be a solution somewhere.  I found Shower Shields, reasonably priced, on Ebay.  Click on the pic and it will take you straight to the Ebay site.  I used one this morning and they worked like a charm.  It would have been difficult/dangerous for me to keep my balance, hold a towel on my chest and try not to get my line wet.  Well worth the purchase.

Shower Shield. Protects your cath line while in the shower.

NOTE:  Oops, Dr. Fedorenko wanted to clarify that it is NOT a Hickman line.  It is a Central Venous Catheter (CVC).  From now on, I will refer to it as my “cath line”.  He also divulged that it was “special” because of its silver ion impregnated cuff for more aseptic usage (snazzy!).  I told him “Too much information.” (makes me woozy).

A Little about Last Night…

Admission:  I woke up at about 4:00 a.m. this morning, virtually unable to move.  I felt like I had a concrete corset on and was only able to take very shallow breaths.  Why?  Well, the “fullness”, which is common following cath line placement, was taking its toll.  For me, who lives with a ribcage that holds me in a constant vice, the line was just what  my muscles needed to set off spasms.  So, what do you do? You lie still, breath shallowly, and private message your comrade in Hawaii, Jeff, who just had this done a few weeks ago!  LOL  He assured me that it would pass within a couple of days.  That was enough for me.  I fell back to sleep, and by the time I woke up, though on uneasy footing, I was able to rally.  Crisis diverted!!

Oh, GEEZ, this is the part where I eat my words…”Michael Row Your Boat Ashore, Hallelujah!”  They weren’t kidding about the potty breaks!!!!

COME JOIN THE PARTY!!!…

I’m sitting here waiting for another IV run of something that they are bringing at 7:00 p.m., and then, tomorrow morning at 11:00 a.m. the killing will continue.  I want to invite you to get into the “zone” with me tonight, by clicking on the logo below, and listening to a song from the Hunger Games soundtrack called The Ruler and the Killer Baby.  It has an incredibly primal sound to it, and for one who likes to visualize making something happen, I think it sets the perfect tone for my chemo on its warpath to kill my t-cells.  If you want, wait until it’s dark,, close your eyes, listen to all of the words, and you’ll be right there banging your head and slaying the dragon with me.  My chemo is the Ruler and the Killer baby!!

Of all of the challenges that you would anticipate me facing during the next month, I can honestly say that the language barrier will be the least of those.  I am not fluent in Russian, however, I have been studying on CD (Pimsleur) over the last four months and have learned just enough to get by (greetings, numbers, days, common phrases).  To fill in the gaps, I have my handy dandy Google Translate app on my smartphone.  Today, when I needed to have a taxi called for my mom to come pick her up at the hospital, I spoke that directive into my phone in English, and then played it back to the nurses in Russian.  They understood, completely, and before you know it, mom was safely back at the hotel.  I went so far as to kiss my phone in front of the nurses, as if to say “Thank you God!” and we all chuckled and nodded in agreement.  The translate app also gives you the ability to take a snapshot of Russian print (menu, food box, directions, etc.) and it will tell you what it means in English.  My phone and its apps have been an invaluable tool in navigating the language, currency, measurements, temperatures, etc.

I think it’s important to mention that even if I wasn’t electronically dialed in at every step, communication with the staff would still be relatively cohesive.  There’s a lot to be said for charades, the simple nod of the head or a warm smile.  They are pretty much the universal language of the human spirit.  The staff at this particular hospital is well aware of why you are here and how far from home you are.  They know what you are about to endure, and they really do go over and above to make certain that you feel safe, secure and cared for.

A distant ship smoke on the horizon…is getting closer every day.  It’s my future life, free of the chains of MS.

Tomorrow’s teaser…

I should be moving to the 3^rd floor for the remainder of my stay, and, stimulation injections (the first phase of the treatment) are scheduled to begin tomorrow night (Friday) at 11:00 p.m.

But, until the gates are open, I just wanna feel this moment…

It’s that moment when the doctor comes in and tells you, that even though your “breathing” tests will have to be completed on Saturday, he would like to proceed with stimulation injections on Friday!!!  I got my green light, people!!!  Patience and prayers, patience and prayers!!!

I am currently on an antibiotic for the cough/cold/whatever it was.  I have not had a fever the entire time and all of the achiness and pain are gone.  I do still have congestion that mimics the ordinary cold…no problem.

I felt so much better this morning that I got up, got my shower and decided to take a stroll through the hallways.  I paused for a moment to glance out the windows in the waiting room and who arrives, but Dr. Fedorenko.  The man is everywhere!!  He asked if he could speak to me in my room, and I’m thinking that it could be really good news or really bad news.  He proceeded to summarize my tests and the indications with regard to my MRIs.  He is very thorough in his explanations and by the time he was at the end of his summation, I was ready jump across the room and say “SPILL IT!!!”  It was then that he said we could begin stimulation injections on Friday.  I was a bit taken aback, as I thought that this cold/flu-type thing was going to shoot me in the foot, but it turns out that it doesn’t have any effect on the beginning of the treatment, at all.  I will be finished with the antibiotic by the time of stem cell extraction and chemo and antibiotics are already administered during that phase as a matter of protocol…I’m covered.  So, I sheepishly say, “Does that mean it’s a go?!”, and he answered, “Yes!” with those eyes that are so blue and filled with such individual care for each of his patients.  He said that he specifically treats each patient differently, based upon the patient and their history.  No cookie-cutters, here!!  Of course, the cheerleader in me was doing a mental herkie.  All that was missing was a set of pom poms and my saddle shoes.  Yes, I’m that old!

Dr. Fedorenko explained that for five days, beginning with my stimulation injections, I would be receiving Solumedrol infusions.  MS patients with non-active lesions or less of a lesion load normally get a 3-day dose.  Since my brain looks like some kind of carnival freak show with all of its glowing speckles, I’m getting the 5-day treatment to reduce inflammation.   I’m very familiar with this IV steroid.  I have had it three times before in response to bouts of optic neuritis.  Honestly, I’m not looking forward to it, but, I got over the side effects of it before, and I’ll get over it again.  So what are these “stimulation shots”?  In the past, when people had a bone marrow transplant, stem cells were extracted from the bone marrow in the hip area.  There are very few stem cells flowing through your blood.  The stimulation injections are given to induce stem cell growth over and above normal production which prompts them to enter (overflow) into the blood stream.  After four days of these subcutaneous (under the skin) injections, at 11 p.m. and 3 a.m., the stem cells will be separated from my blood through a process called apheresis, frozen and returned back to my blood after I’ve received four days of chemo.  Many more details on the apheresis when the day comes (should be next Tuesday).  Things move quickly here…no pussyfooting around.  They are my kind of people!!

Tomorrow will be another down day of nursing with antibiotics and rest.  Oh, I almost forgot one of the most important parts of my conversation with Dr. Fedorenko.  Even though I’ve promised myself that I would  hope only for the halting of my MS, I was curious, based on the fact that I had so much enhancement in the lesions of my brain, if I could expect any kind of reversal/improvement in my symptoms.  He said, without hesitation, “Yes!”  He said that there is a potential for 50-60% reversal.  Those numbers may seem small to you, but when I had 50-60% less symptoms in the past, no one even knew that I had MS.  That’s how much of a difference that could make in my life.  Ok, getting teary…  I want to make it very clear that there is no guarantee what percentage of reversal I will see, or which of those symptoms may be positively affected, and I’m excited to see if/when which ones do.  He also stated that you would see the majority of that reversal within the first two years, and possibly beyond that.  He is adamant, when discussing the “during and after” of this treatment, that you will have better success if your heart and mind are involved in the process with a positive outlook.  No problem Dr. F.!  Bring on the pom poms!!!

I was able to make it out of the building today and had a chance to take some pics of the hospital (below).  The grounds really are lovely.  Take a look at my castle golden.  But, until the gates are open, I just wanna feel this moment… Thanks, everyone.

The gates to freedom.

A grand facility.

A shot of the grounds.

My castle golden.