Oh-oh-oh, Miss International Love…and Fees!

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!

Are You in Control, Lord? Are You in Control?

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!!

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

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

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

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

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

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

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

My body cleansers. Notice the pink duct tape labels?

Sterile gauze pads that you soak and wash with.

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

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

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

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

My nemesis. The Cuff!

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

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

Livin’ it Up While I’m Goin’ Down…

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. 

Let’s Party Like it’s My Birthday…

Drink Bacardi, like it’s my birthday…

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

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

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

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

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

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

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

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

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

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

THE TRANSPLANT!

Pre-transplant mood tunes.

Waiting for the stem cells and prep.

Dr. Fedorenko checking on the stem cell delivery.

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

The stem cells arrive!!

Vitals are in check!

Transplant accessories?

Stem cells are warmed in a bucket.

Transplantation in action.

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

THE CHEER WAVE HEARD AROUND THE WORLD…

Where the Wave began. In my room in Moscow.

Vicki Wilson, St. Augustine, FL

Sandy Wolford, State College, PA

William & Harry, wherever they want to be!

Patty Chwatek, keeping the wave going at Planet Fitness

My husband’s NESL blacktop crew!!!

Margaret O’Sullivan from New Jersey.

Lesa Lashinsky from Hollidaysburg, PA

Lauren Abbot & Friend from Minnesota

Kristy Cruise from Gold Coast, Australia.

Mick, helping me get some satisfaction.

Karen Frederick doing the jammy wave in Woodbury, Pa

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

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

Autumn’s awesome yoga Wave…

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

Adam doin’ the Wickel Wave!!

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

Tuck Russell doing the canine wave.

This little one is helping me reach for the stars.

The Altoona Chorus of  Sweet Adelines International Wave!!

I Can Sleep When I’m Dead…

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 manic, 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 relly, 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!

Oh, Mamma Mia!

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!