My, oh, my, how things can turn on a dime.  Yesterday, things are humming along, with all of my testing done but two which were to be completed today.  I was on the fast track to approval and commencement of stimulation injections, which is the first phase of the stem cell transplant process.  I felt like a million bucks and was over the moon about hanging out with Team USA (Jeff & Tammy).  I come back to my room, had a fab talk with Dr. Fedorenko, he leaves, and it all went down hill from there…

First, came the scratchy throat, then, the stuffy nose, then, the sore throat and ear, then, difficulty swallowing, then, the cough.  I managed to sleep from 9:30 p.m. to 12:30 a.m..  When I woke up, I was in a hurt locker and was soooo thirsty.  I go out to the water cooler by the nurse’s station only to find that it was empty and there wasn’t any available on other floors.  You can’t drink the water out of the tap until you reside on the isolation floor where all of the taps are on a filtration system.  I had a headache and felt like my scalp was inflamed.  No problem!  I’ll just take some Tylenol.  With what?!!  My spit?!!  Yes, I could have tried to swallow them without any liquid, but, it would be just my luck that I would choke on them and they wouldn’t find me until the next morning. I can see the headlines, now…”Pennsylvania Native Travels to Russia for Stem Cell Transplant, Only to Die from Tylenol Overdose!!”   So, I thought I would just suck it up until the morning, which I did.  Well, by daybreak, not only did I have all of the aforementioned symptoms, but, at that point, the lymph nodes in my neck were sore, my jaw bones were sore and my teeth.  Yes, my teeth.  Did anybody see a bus with a big dent in the front of it that strangely resembles the shape of my form??!!  That was me…roadkill!!  It’s important to note that the last time that I was sick (with the exact same thing), was a little over three years ago, and, then, maybe four years before that.  I RARELY get sick.  I messaged Tammy who is upstairs in the isolation rooms and who is more in tune with Dr. Fedorenko’s schedule.  I asked her if she thought I should send him an e-mail to let him know that I’m sick and to see if he could check in with me sooner rather than later (not that it’s ever later…the  man always seems to show up at the right time).  It just so happens that he stopped off to see Tammy when he got to the hospital and she put up the smoke signal for her ailing American comrade and the next thing you know the good doc is standing in my doorway with a mask on and his stethoscope in hand to listen to my breathing (it was normal).  It was obvious from the hoarse sound of my voice, stuffy nose and visible weakness that something was up.  Good news?!!  I did not have a fever.  Bad news?  He had to cancel my “breathing” tests for today, as they would not be accurate.  He said that it was something bacterial and proceeded to give me a box of pills to take immediately, tonight, and tomorrow morning.  He said that I would have to take them for the next 2-4 days.  Of course, in the back of my mind, I’m terrified that this would lead to me being disqualified from treatment.  I just kept saying “I’m so sorry…I’m so sorry”.  He’s a man on a mission, and, like me, he likes to stick to a schedule.  He was very understanding and said that none of us can predict our health, and not to worry about it.  He continued the conversation by saying that “When you get up to Jeff’s room…” (I will be staying in the same room that he did).  When he said that, it made me think that short of the two tests that I have left to take, and kicking this nasty little medical roadblock, that is was very promising that I would get the green light.  He did not come right out and say that, but technically, he’s really not supposed to.  A girl’s allowed to dream, right?!

Mom visited today, armed with paper towels, napkins, Kleenex (my nose was already raw from the TP), and wash cloths (they are not provided here), and, of course, a Coke.  It’s 6:36 p.m., here, now and I’m feeling a lot better.  BTW, the doc attributed my abrupt decline in health to lack of sleep and the stress of traveling.  I’ve made a decision to completely turn my phone off during my sleeping hours.  I usually put it on vibrate and then lay it on my bed, however, I have it set to tell me if you’re flipping a light switch on in Arkansas, so it makes for a very disruptive night.  I can’t help it!  I don’t want to miss anything or anyone!!

Before I sign off, I wanted to share something cool from today.  When the nurse came in to give me my pillbox and thermometer, and get my height and weight (I’ve lost three lbs.), her phone rang.  Her ringtone was “Whistle” by Flo Rida.  Crack me up!

It’s time for me to get to bed and for you all to let me sleep on it…baby, baby, let me sleep on it.  🙂  Oh, here’s a pic of my pillbox.  I’m assuming that’s my name written on it.  I think it looks fierce!  🙂

My pillbox. The sections are labeled “Morning”, “Midday”, “Evening” and “Night” in English & Russian.

After two days of sketchy to no internet service, I am finally up and running with a fabulous modem that services all of my electronic comforts.  I am very grateful to the hospital staff who obtained and installed the equipment for me.  Over and above all the excitement, I’ve been up all night…find out why, below…

Review of the Last Two/Three Days:

Me, Doug, Mom and Carson traveled seamlessly to  JFK airport in New York.  Carson and Doug’s return trip was a little more on the wild side and almost included a trip to the Bronx.  Carson solved their navigational issues by putting on her “lucky leopard shoes”, and programming the maps on Doug’s phone, which lead them out of the city and safely back to the Cove.

Mom and I took a direct flight to Moscow (no layovers).  It was approximately 10 hours which were relatively pleasant and time flew by faster than expected.  The most uncomfortable part of the flight was my behind (note to self…take small pillow to sit on for return flight).  The Delta staff was very accommodating to me in New York and when we arrived in Moscow.  They provided me with a wheel chair and delivered me to all of the checkpoints and to the gate.  In Moscow, they also provided a wheelchair for me the entire way to baggage claim and then on to meet our taxi driver, who was pensively waiting with a sign that clearly said “Brooke Slick” on it.  Why is it that I have to travel to another country in order for people to be able to remember the “e” on the end of my name?  ha ha   Via taxi, we traveled from the airport to our hotel.  I am convinced that the driver has attended Richard Petty’s racing school.  It was one wild ride.  They have lines on the road just as we do, however, in Moscow, they are more of a suggestion than a rule.  Upon arrival at the hotel, we were very pleased to be greeted by an English-speaking  attendant, Ana, who was very kind and patient, in particular, when I left my passport in the taxi and we had to wave him down to look for it (no passport, no check-in).  Our room is much nicer than we expected with all the bells and whistles.  However, the internet service was touch and go.  I had to sit in the bathroom or on the floor by the front door just to get two bars.  Mom, has since been transferred to another room, that has “guaranteed” internet service.  She said that it was actually an upgrade in terms of accoutrements, however, the price remained the same.

The first night, we had the pleasure of meeting with Johanna, the wife of my U.S. friend Jeff (from Hawaii), who is currently finishing up his HSCT here at Piragov Hospital.  She knows all the tips and tricks and was able to procure a cab for us through the hotel concierge the morning of my admission to the hospital (yesterday).  When you arrive at the hospital, it is gated and guarded by security.  You must go through a security checkpoint and must have a pass, which Johanna had so we were able to slip through.  She called Dr. Fedorenko for us and he came to greet us.  He is only 37 years old, and an incredibly sweet and attentive doctor.  We were transported (me in a wheelchair) through underground tunnels to the opposite side of the hospital, where Dr. Fedorenko accompanied me through the administrative offices to sign all of the same types of forms that you would in an American hospital.  This is also where we made our first payment of $1,000 which includes the first week of testing, that confirms whether or not you are healthy enough to endure the transplant.   For those of you planning to have HSCT in Moscow, please make sure that your bank knows that you will be in Moscow.  Even though I did notify my bank, they declined my bank’s Visa card and I had to use another Visa to cover that expense.  All of these tests follow the international  protocol for stem cell transplant and include, bloodwork, xrays of chest and sinuses, abdominal ultrasounds, EKG, MRIs, CTs and pulmonary tests, and swabbing of all your orifices, and, yes, I mean ALL.  Ladies, one of the ultrasounds is trans-vaginal, so, you will have to check your pride/prude at the door (not easy for me).  I reveal that tidbit ahead of time, because knowledge is power, and nobody likes that kind of surprise.  That would be like showing up at work one day and your boss saying “PAP smears for everyone, today!!”  ha ha  So far,  I have only had the Xrays, ultrasound of the legs, EKG and bloodwork.  The fun tests begin on Monday.

I am currently being housed in a suite that includes two rooms.  One rooms contains my bed and a love seat-sized sofa.  The adjoining room includes a refrigerator, microwave, small table and two chairs.  The bathroom is located off of that room.  There is a large window in each of these rooms that overlooks the courtyard.  It’s a nice view, if I do say so.

View #1 from my window.

View #2 from my window.

My bed, etc.

My kitchen area.

Much of yesterday, was spent doing testing and waiting about 4 hours to get my internet up and running.  They decided that rather than getting a hotspot, that they would get a modem that could handle up to 10 devices.  God, I love these people!!  Dr. Fedorenko informed me that I would not have to purchase the modem, because it could only be used in Russia, anyway, and that they would be able to offer it to future patients.  I will, however, have to pay for the internet service while I’m here, which for the entire 5-6 weeks is only a little over $100.  It allows me the ability to stay in touch with friends and family, as well as pay my bills online.  I’ve already been Skyping with my husband and my daughter, and it really is worth every last cent of that $100.  Connectivity rocks!!

Yesterday, Dr. Fedorenko had planned on speaking with me around 3:00 p.m., but by the time they were done working on my modem, it ended up being closer to 4:30 p.m.  It turns out that the conversation he had with me was one that I was not expecting, but that I’ve been up all night digesting and I’m already at peace with it.  What he informed me of was, that after reviewing my medical records and having an in-depth discussion with me about the history of my MS, that he considers me to be SPMS (secondary-progressive MS), and not RRMS (relapsing-remitting MS).  Was I shocked at his conclusion?  No.  Honestly, I had thought for quite some time that I was, but after reviewing some of my neurologist’s notes from this past November, I was still labeled RRMS.  That was the first little pin to my balloon.  The next pin was a little larger, and the one that I sat up all night researching.  He told me that based on the fact that my MS had resisted 4 different MS drugs as well as steroids, he recommended that when I return to the U.S. that I do a maintenance therapy of Rituximab.  The stem cell transplant that I am having will halt the MS, however, to further guarantee that no relapse would occur, he recommended the Rituximab.  He said that it is not mandatory, but simply a pre-cautionary measure due to my history of STUBBORN MS!  So, what is Rituximab?  It is used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells. This includes many lymphomas, leukemias, transplant rejection, and autoimmune disorders.  It turns out that the Altoona Center for Clinical Research, which is where I used to have my Tysabri infusions, has been involved with Rituximab, and I plan on contacting them while I’m still here to see if they administer it there.  I will, of course, have to have my neurologist or hematologist/oncologist order it.  If either of you happen to be following along, expect a call from me.  After staying up all night worrying about it, Dr. Fedorenko answered all of my questions this morning and said that I would require four infusions (1 every 3 months/4-5 hours long) for a year.  Then, the deal will be sealed for good. The first of those infusions will be done before I leave here in Moscow, where I will be able to be monitored for any allergic reactions, etc., and the other three stateside.  My friend, Jeff, who is here for a transplant for MS, had his Rituximab infusion here yesterday, and we were able to meet and chat afterwards, so, my fears have been quelled.  The last items that we discussed this morning were the fact that he thinks that I am at the very beginning of the progressive stage.  He said that RRMS goes up and down and up and down and then starts to simply progress.  He said that I am right on the cusp of progressing.  Basically, I got here just in time!  Thank you, God, Amy Peterson, my family, friends and a community full of people who helped to get me to this facility to rid myself of this monster just under the buzzer.

Tomorrow, as well as today, are days off for me.  Although they are a hospital, they only do testing on the weekdays and mine will continue on Monday.  I should have my definitive “yes” or “no”, no later than Thursday.  It is my hope that there are no red flags that would keep me from proceeding with the transplant.  Until then, mom is currently out learning her way about town with Jeff’s wife Johanna.  She just sent me a message saying that they had taken the Metro to Red Square and it was amazing.

I must note that even though there is a language barrier, it doesn’t stand in the way of communication or proficiency.  They are very caring and a few of them know a little English.  The food is an entirely different story. The good news is that I’m not a big eater to begin with.  Even better news is that they serve bread with everything.  When they say “man cannot live on bread alone”, well, yes they can.  Today, I actually had some of the best mashed potatoes that I’ve ever had.  According to Jeff, that may not be the case by the time I leave, and I’m thinking that the tea that they give me that smells like raisins will probably be looking like champagne by the time I depart.  I did bring Lipton soup packets, microwave popcorn and oatmeal as a backup, but I haven’t had to break into them yet.  The drink packets (Kool –Aid, Hawaiian Punch, Lemonade…) and water bottle that I brought with me have been a Godsend.  They have a water cooler where I am able to fill it with water that is safe to drink.  They do not regularly use salt or pepper to season their food/soups.  Once again, not a big deal.  Have you ever been to Ireland?  I think they top the list of bland foods.  No offense to my Irish friends.  They are fabulous!  I lived with a Lebanese family in Australia for a month in the late 80s.  Their food and seasoning was completely beyond anything I had ever experienced and I survived.  Given that, my little Russian culinary adventure should be, well, palatable.

That’s it for now.  Tomorrow (Sunday) should be event –free, so I probably won’t be posting until Monday.  Thank you all for following along.  It’s all good in the Moscow hood.

It’s 1 1/2 weeks until liftoff and time truly is flying by.  On the other hand, I feel like I’m spinning my wheels.  A large part of that is the fact that I am constantly in touch with Jeff and Tammy, my two American friends, who are currently in Russia and are about a week apart in the timeline of their treatment.  I finally got to meet them via Skype last week.  They are both as comical and friendly as I had imagined.  I’m so blessed!  So, every day, I see them each progress from landmark to landmark of the transplant process, while I quietly cheer from the sidelines an ocean away…and wait for my turn at bat.  The upside to the ability to communicate with them (thank you, internet, Facebook & Skype), is that I become privy to all of the tips and tricks of traveling to Moscow, in general, as well as residing at the Pirogov Hospital for a large majority of my stay.  Even they are learning new things every day and coming up with “If only I had brought X with me” observations.  Little things like knowing that there’s an ATM in the hotel lobby, that the breakfast buffet is approximately $18.00, that the cab ride to the hospital is $20 each way, that, if there is more than one person in the hospital room with you when it’s time for a meal, they will actually bring a meal for your visitor, too.  Today, they suggested bringing packets of soup mix, oatmeal, drink packets, and even microwave popcorn from the States.  Brilliant!!  I’ve also become enlightened about the medical/hospital protocol with regard to personal privacy and physical boundaries.  Basically, there are none, and it’s my understanding that the first week of testing will put this prude to the test.  You know the old phrase “Let it ALL hang out!”?  Well, apparently, that’s exactly what I’ll be doing.  I am so honored to have my brave comrades share their experience with me, and I plan to do the same for those to follow, just as Amy Peterson did for Jeff, Tammy and me.  Watching every step of this treatment over the last two weeks, I can tell you that there is no question that it will be the most difficult task, both physically and mentally, that I’ve ever confronted.  It is uncomfortable, sometimes painful, exhausting, invasive, unpredictable and awe-inspiring, all at the same time.  Tomorrow, Tammy begins her first of four days of chemo and Jeff, who has completed his chemo, and received his stem cells yesterday, will be going into isolation.  Very soon, I will be joining them in my attempt to fly like an eagle, till I’m free…from MS.