Shock the Monkey

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Shock the Monkey

Please disregard the previous version of this post that you may have received earlier today. This is the post in its entirety.

Over a month in the making, this post focuses mainly on what I’ve been doing in an effort to follow through with Dr. Fedorenko’s post-transplant recommendations. He prescribes three main requirements for a successful recovery. They are Good Attitude, Good Food and Physical Therapy. In addition, I will be discussing the improvements that I have seen since returning home. Some of them are pretty cool!!

Good Attitude

Well, I’ve always had a good attitude, and when you suddenly find yourself not having to use a trekking pole after three+ years of relying heavily upon it to navigate in public, your attitude certainly gets a little boost. That’s right. Since my last post, I am no longer dependent upon using that pole (nicknamed Tiff). I do still wear a foot brace for the foot drop, but, it is quickly becoming more of a hindrance than helpful. I’m not sure exactly what happened, but after living with this miracle for over month, I have come to the conclusion that it has something to do with my brain being able to more quickly process what I’m seeing as I’m walking and my legs now receiving the messages that were previously prohibited by damage from MS. Add to that the fact that my balance has improved by at least 50% and I can’t help but have a good attitude. The portion of my balance that continues to need work is the part that requires both feet to be working in unison to provide a steady gait. My brain is ready to hit the trail, cut my right foot is hesitant to do so, but it’s taking baby steps to get me where I’m going. That leads me to my next post-transplant recommendation…Physical Therapy. Don’t worry, I didn’t forget about the Food.

Physical Therapy

Shock the Monkey!

This picture evidences another one of the miracles that has happened since my HSCT, If you’ll notice, the right foot with the electrodes connected to it is flipped up, whereas the left foot is relaxed. Why so miraculous? Last October, after six weeks of this same stimulation treatment, this foot was completely limp. No response at all. There’s no question in my mind that the HSCT is responsible for that new foot-to-brain connection. That offers great hope for potential recovery of my right foot drop which was the reason for all of my past falls. Now, we just need to strengthen and teach it how to walk all over again. In addition to stimulation therapy, my therapists are working on balance, and stretching and strengthening of my muscles that have been dormant for so long. Something else that continues to improve is my ability to navigate steps. Instead of two-stepping up the stairs as I have for four years, I am going up one step after another with alternate feet. It may seem like a small feat, but it is a huge victory for me. I’ll be honest…the physical therapy is much more difficult for me than the actual HSCT was. After four weeks of therapy, I am still in the “very sore” stage. Take a look at a few of the sometimes grueling, yet, sometimes comical exercises that I endure. These pics are all clickable for a closer view and explanation of what’s going on.

Owey!

Balance Board

Toes to Nose

Command Central

HealthSouth Rehabilitation

Good Food

As most people do after they’ve been released from a lengthy hospital stay, especially when it’s in another country, you do a week or two of eating everything you’ve been unable to eat while hospitalized. That was about it. I’m trying my best to eat fresh fruits and vegetables and cut the fat off of all of the meats that I cook. Yes, I’ll have the occasional small ice cream cone and I will not give up my fountain Coke, but that’s all of the splurging I intend to do. I’m really not a foodie. I am well aware of the trepidation about the food for others who are having their HSCT in Moscow. Trust me, you’re going to be way to preoccupied to worry about food.

Additional Improvements

An especially pleasant improvement that I think I had for weeks and didn’t even notice it, was my MS Hug disappearing. The MS Hug is a sometimes very painful muscle spasm that wraps around your ribcage from front to back. I had it for about 5 years and sometimes the squeezing sensation would be so strong that you could barely take a breath. No longer having it allows me to stand up straighter, which assists in my ability to walk. I’ve had one or two twinges of it within the past month which were just enough to remind me how glad I am that it’s gone, but they were temporary and hopefully, will not return.

In the last two weeks, the numbness on the ends of my fingertips has started to decrease. They are definitely not 100% yet, but I would say I have seen about a 30% improvement. Instead of my hands feeling like I’m wearing winter gloves, they feel like I’m wearing thin, plastic gloves. On average, I’m expected to see a majority of the improvement in my symptoms over the next two years, so, I’m very pleased to see these small changes early on in my recovery.

Miscellaneous

Two weeks ago I had the pleasure of meeting with my hematologist/oncologist in Pittsburgh. He was pleasantly surprised that I was no longer using my pole and was very pleased with my bloodwork results…all were normal. I will continue to see him every 3 months and he is arranging for my 3 doses of chemotherapy (Rituximab, aka Rituxan) that I will be receiving over the next 9 months. For those of you who may have missed the chemo story earlier on, I will be taking those based upon the fact that I had 10 enhancing lesions upon my arrival in Moscow and that my MS had previously failed to respond to 4 MS drugs. My MS is a very stubborn one and the doctor just wants to make sure that it doesn’t get any crazy ideas about making any appearances in the future. These 3 extra doses are not mandatory, however, why would I come this far and not take these 3 extra infusions for safety’s sake? Bring it on. I am happy to report that my hair is making a comeback (see pic below). Within the last 3 weeks it has really taken off. Yes, I still look like a refugee and I will be covering it with scarves and hats for a couple months, but, I’m happy to have it back. I do believe it is going to be the same color, but not certain of the texture…please be straight, please be straight, please be straight. ha ha

Comeback!!

As always, I would like to thank everyone for following along and continuing to support me during this recovery period. I have a LONG way to go. I am now doing my best to support my fellow MSrs who are heading off to various facilities around the world for their HSCT. They all amaze me.

A VERY SPECIAL THANK YOU to…The staff at HealthSouth Rehabilitation’s Duncansville facility for tolerating my giggling. You’re the best!!

Hello…is it Me You’re Looking for?

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Hello…is it Me You’re Looking for?

Well, it’s been two weeks and two days since I stepped foot back onto U.S soil.  I quickly found myself dealing with some serious chemo fatigue coupled with the residual effects of sleep deprivation.  The kind of fatigue where you fall asleep in the middle of a full-on conversation…embarrassing!   My plan was to take a week off from blogging and to jump back on to let you all know how things were going.  Three days into that plan, when passing my husband in the hallway, he says “Do you have a rash?”  I’m like “What do you mean?”.  I was wearing a t-shirt and he said “It looks like you have a rash on your neck.”.  I race into the bathroom, and, sure enough, I do appear to have a rash just peeking out over the collar of my t-shirt.  It looks like heat rash and it doesn’t itch, so, I wasn’t panicking.  I figured I’d assess the situation further, and lift up my shirt in front of the bathroom mirror only to find that I have a rash from my neck down to my waist and from my neck to lower back.  WHAT??!!!  This was Monday the 10th.  Late Monday, I shoot an e-mail off to Dr. Fedorenko in Moscow.  He seems to think that it could be a food allergy, but, I’ve never had any food allergies, nor had I eaten anything out of the ordinary since my return.  He recommends a short course of steroids (my favorite…NOT!) and recommends that I see my PCP.  I call my PCP on Tuesday.  They can’t see me until Thursday morning.  No problem, except for the fact that, by Thursday morning, I had a low-grade fever, chills, and the rash is turning into something that looks more like hives.  I continue to try to nail down what food or environmental item I may have been exposed to, all the while, my strength, which is already compromised due to being in an 11 x 12 room for five weeks continues to deteriorate.   I can survive a stem cell transplant like a champ, but, throw a fever at me and I’m down for the count!  REALLY?!!  By Wednesday night, I had been living on the couch for almost three days wondering what the heck have I done to myself?!!  I had this fabulous run with no complications, no pain and none of the typical HSCT issues that could arise…NONE!  My HSCT experience was nearly flawless.  I was seriously considering submitting my photo to all of the medical dictionaries, under the entry of HSCT Perfection!  Was all of that going to have to go up in smoke?  Wahhhhhhh!!!  I finally get to see my PCP on Thursday morning.  It is quickly evident to him that I was shaking like a leaf, my blood pressure was low (as usual!), my heart rate was 138, my fever was 101.something, my appetite was gone, and the now “itching rash” had spread as low as my mid-thigh.  We go over every drug that I was currently taking.  There were only two…Bactrim (for bacterial infections) and Acyclovir (for viral infections), oh, and Tylenol for the fever.  The Bactrim and Acyclovir were both given to me upon my release from the hospital and I had been taking them from day one that my transplant regime began.  They are both standard HSCT drugs.  Bottom line was that I had been taking them for a month, already.  My PCP, took the rash very seriously, and quickly nailed down, after ruling out a rash from Rituximab use, and a rash from Engraftment Syndrome, that it was most likely due to prolonged use of Bactrim, which he said was common.  He pulled the Bactrim out of the lineup and replaced it with once-a-day Levoquin, kept the Acyclovir, put me on a two-week course of Prednisone, and sent me for STAT bloodwork.  He called me that night (after hours…kudos!) to say that all of my bloodwork (platelets, WBC, hemoglobin, etc.) were all completely normal.  He did say that my liver function was a smidge high, but that was to be expected following chemo.  I immediately, sent an e-mail back to Dr. Fedorenko, who e-mailed back right away to say that my PCP had done exactly what he would have done.  What a relief!   We had picked up the meds on the way home and I started them ASAP.  By the next day (Friday) at 1:00 p.m., I was not only able to make it off the couch, but my fever was completely gone, I did four loads of laundry, cleaned, dusted, swept, and ate like I hadn’t eaten in weeks.  WOW, WOW and, WOW!  I had a followup appointment with my PCP on Monday and he was very pleased with my results.  I felt so good on that day,  that I convinced mom to stop by Walmart with me (I hadn’t been out in public since my return home) and then I talked her into letting me drive home from there (about 15 miles).  I had already been given permission to drive before I left Russia, but, my dizziness and sickness had kept me from doing so.  I felt like I was free.  I have been driving ever since and even made a couple of trips to Altoona (about 30 miles away).  It was during these independent jaunts, that I discovered that I really didn’t need my trekking pole for my balance as much.  Normally, I would wear my foot brace (which I did), and I would have my trekking pole for balance and stability while lifting my hip which lifts my foot to clear the ground.  This trip, each time I would walk from the car to a store, I would take my trekking pole, but, I found mysef carrying it in the air in my hand.  Pretty cool stuff!  In addition, although I still use the brace because my leg and foot are weak, in general, from being cooped up with a lack of activity for so long, the brace and shoe seem to try to slip off of my foot as my foot is trying to very gently turn itself into its correct (forward) position.  This is all within the past few days, so I’m still letting it gel, but it’s so fun.   I hadn’t divulged this informaton to my husband, because, when you tell people that things are getting better, then they stare every time you walk, over-analyze and don’t see all of the changes that you are feeling and may wonder why you’re not skipping down the street.  Trust me, there will be NO skipping in my immediate future.   However, last night, he asked if I wanted to go out to dinner and when we pulled in to the restaurant, normally, I would have grabbed my trekking pole and his arm after he helped me out of the car.  This time I said “Go ahead.”  He said “Don’t you need your pole?”  My reply, “Nope!”  “Do you need my arm?”, he says.  I respond, “Just don’t go too far, in case I do.”  He stands back, watches me get out of the car unassisted, walk across the uneven parking lot, up onto the sidewalk, across a carpeted floor and to our booth, all without my trekking pole or his arm.  I was totally testing myself and was petrified because I knew that I could be face-planting at any second, but, I DID IT without a single bobble.  He was impressed and asked when I started doing that.  I told him I had been practicing all week.  He proceeds to tell me that he was going to have to give all of his friends an update, because the day before he was telling them all that I was still walking with my pole when I was in public.   Then, today, we went grocery shopping and the shopping carts that I used to (8 weeks ago) have to hang onto for dear life in order to walk, I was able to gently place my hands on and just kind of tap along while I kept my balance and walked all on my own.   It gave me that feeling that a baby must get when attempting their first steps and one parent releases them to walk across the floor to the other parent and they make it the entire way without stumbling and everybody cheers.   Yep.  That was me at the Creekside Inn last night.   Nobody else in the restaurant had any idea that they were witnessing a miracle, but, my husband certainly did seemed impressed.  Hurray for HSCT!!  Whoop, whoop!!

I will continue to take my Prednisone for its course (love the instant 8 extra pounds of facial/abdominal weight within 3 days!) and I finished my Levoquin today.  My appointment with my hematologist in Pittsburgh will be in two weeks and I will begin my physical therapy, which my PCP was kind enough to prescribe, within the next three weeks or so.  I consider myself just scratching the surface of what is normally up to two years of initial improvement.  And, let’s not forget, at this moment, my MS has been completely shut down.   There will be no more trips to the infusion center for the MS drug which made me feel worse and no more years of painful injections.

I have spent the last week doing what I had planned on doing my first week home.  Unpacking my luggage, rearranging the house, doing tons more laundry, cooking, and, of course, resting in between.  You might be wondering how my other MS symptoms have been.  As expected, and for an average of 3-6 months following HSCT, I do and may continue to experience a worsening of some symptoms.  Not that a fever helped the situation, but, my fingertips are more numb than usual and the dexterity in my right hand is less than stellar.  Patience is an HSCTrs biggest challenge.  I may have mentioned that “patience” is at the top of my “Brooke Sucks at These” list.  lol    But, I’ll get over it…in time.  Always at the top of my “To Do” list will be paying it forward in the form of shouting it to the mountaintops about HSCT and its benefits.  There’s no need for MSrs like me to suffer any longer than they have to.  Why not use my big mouth to make that happen?

I can’t thank you all enough for all of the private messages and e-mails asking how I’m doing.  I think this post pretty much spells it all out.  I will, of course, continue to blog as events (good, bad and ugly) unfold.  However, I will not be able to feed the addiction that I’ve since been informed of that took place every morning for the coffee/tea crowd while I was blogging from Russia.  I will be setting out on new, recovery-related adventures, as well as watching the lives of fellow HSCTrs progress as they start to make their own way to Moscow.  One of my HSCT sisters begins her treatment tomorrow, and there will be many more to follow within the next year.  I am so anxious for their life stories to be re-written, as well.  What a gift!

In the meantime, peace, love and recovery…from the Cove!

My Recovery Room!

My Recovery Room!

The Wanted…Mom’s Companion/Caregiver/Solo Advice

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The Wanted…Mom’s Companion/Caregiver/Solo Advice

By popular demand (mom has been contacted by many), my mom has put together a recap of travel advice for those traveling with a companion/caregiver or if you are traveling alone.  In the meantime, I am working on my own update covering my first week at home (to be posted in the next few days).  Here ya go, Mom…

ADVICE FOR THOSE TRAVELING WITH A CAREGIVER/COMPANION , OR TRAVELING ALONE

This is a recap of my Russian experience as an accompanying person with my daughter for her HSCT treatment.  As you prepare for your trip, and throughout the entire experience, if you encounter any problem, or have any question, please know that you can contact me at any time via e-mail – or friend me on Facebook (Connie Taylor) and we can message – for solutions to any problem.  You will never be alone and we will follow your progress toward this miracle you’re about to experience from day 1 to your return to your home. My e-mail address is:  cct41@atlanticbb.net.  Please put MS QUESTIONS as the subject line so I don’t delete the e-mail in error.

These are the things the caregiver may be concerned about:

Emotions:

You may feel guilty about the person you’re accompanying going through so many medical procedures, and you’re out there enjoying the scenery.  There is no need for guilt. You can be there for them, whenever they need you to be.   After I saw the hospital, doctor, and how organized and caring this process is, any guilt I had subsided.  Bottom line, you don’t have MS, they do.  You can’t fix it.  Dr. Fedorenko (“Dr. F.”)  and his staff will.  When they are in isolation. there is a constant stream of staff coming in to do tests, IVs, injections, etc., so, it’s not as ‘lonely’ as it might appear.  They are tired and need rest.  I knew she was in good hands and I had total faith In my daughter’s determination, the HSCT process and the care she was going to receive.  At that point, I decided to make the most of it – we will never have to do this again.  NOTE:  I never once experienced any concerns about safety of my person or my property.   I never found the people of Russia to be anything but pleasant, friendly and helpful.

Airport to the hotel:

The taxi ride from the airport to the hotel is anywhere from 1-2 hours depending upon which airport you fly into.  We flew into SVO.  It is a beautiful airport and their staff was very accommodating.  We did arrange with our airline, Delta, for Brooke to have a wheelchair.  They provide you with an assistant who will help you navigate through the airport  and allowed us to avoid all of the long lines at customs.  Basically, you are given VIP priority.  Dr. Fedorenko arranges for you to be picked up at the airport upon your arrival in Moscow and deliver you directly to your hotel.  The cost of that taxi was $130.  Hang onto your hats when you get into the taxi.  Driving in Moscow is fast and furious and the lines on the road are nothing more than a suggestion.

Hospital:

Dr. Fedorenko is interested in the patient’s care, comfort and results – not money.  Dr. F speaks English, e-mails in English, is taking lessons, and his staff will as well, to improve English.  He will answer any and all questions that you may have about the patient that you are accompanying.  Dr. F’s staff is kind, pleasant, organized, efficient and well-trained.  He is involved in every aspect of your treatment, right down to making sure that your fridge is fully stocked with protein drinks.  The hospital’s protocol to insure an infection-free facility is amazing and followed faithfully by the staff.  Cleanliness is a top priority. The hospital may appear “old-school”, not full of bells and whistles, but they get the job done and they get results  The caregiver is always treated as a guest, permitted to share any/all meals with the patient, made to feel comfortable, and never made to feel as if you’re in the way.

I shared some meals but found that some of the Russian foods were something I could not get used to.  They’re healthy meals and we should all take a lesson from them. Brooke learned to eat most things. Refusing to eat would delay HSCT progress and goals. The patient must go with the program.

Security and transportation to/from hospital:

Security at the hospital is tight. You can enter only via the security building and showing the pass provided by Dr. F.  You are given a paper with the taxi company’s phone number, hospital address, and Dr. F’s mobile phone on it.  You show that to the concierge at the hotel and they know to call a taxi. The taxi driver must check in with the concierge before leaving with you so it is completely safe.  You may need to show him your paper with the hospital address on it.  The fee to the hospital is one set by the hotel/taxi people.  It is 600 rubles – $ 18+ US Dollars.

There is a high, wrought iron fence around the entire hospital property and no one can enter without the pass.  Dr. F. is the only one who can call the taxi company for a cab to take you back to the hotel. You tell him what time you want to leave, and he will schedule it and tell you when they will be there. They will pick you up outside the security building. You don’t need a pass to leave the property but must go through the security building again to get out.  The taxi he calls must have the number 956 (part of their phone number) on the side of the vehicle.  You can get a business card at the hotel desk with the address of the hotel on it.  You just say VEGA (pronounced like Vegas without the S) and show the card so they know for sure where you want to go.  The fee for this ride can vary but is lower than the hotel due to an agreement with the hospital.  It can be from 300 to 400 rubles – $ 9.00 to $12.00.

Patient:

The patient’s attitude is a huge part of the battle.  You both should always “keep your eye on the prize”-to leave MS in Russia.  A positive outlook, cooperation with the doctor and nurses, accept your surroundings and embrace the opportunity to do this as a blessing.

The facilities surrounding the patient are quite nice.  They are clean, private, they have a fridge and a microwave oven. Dishes are kept in the patient’s room and are used only by that patient throughout the procedure. Disposable paper products are not readily used in Russia anywhere.

Between medical procedures, books, electronics, and much-needed naps the patient will have a lot to fill the day.  WI-FI is available in the room.

Everyone is different.  Some patients required pain meds, Brooke never did, and with each patient the staff develops new ways to keep undesirable reactions to a minimum.

Dr. F’s experience with HSCT has grown in leaps and bounds, he knows what works to relieve chemo nausea, pain, infection, etc.  He has tweaked the necessary medications to make this process successful and without distress to the patient.  These meds protect the gastric system, liver, kidneys, etc., ensuring the best results possible.

Communication/Electronics:

As the person on the outside, these items were my greatest challenge – but thanks to electronics were made easier with specialized APPs available for your phone, tablet, or whatever electronic device you bring with you.

I did not bring a phone, nor did I need one.  Brooke also didn’t buy a SIM card for her phone to get service in Moscow, but instead used a APP called Viber on her Smartphone to talk and text to home and is free to use.  It worked very well she didn’t have to sign up for international talk and text with her phone carrier, Verizon.   I Skyped with Brooke and with my family in Pennsylvania. I had a Nexus 7 tablet.  I loaded a currency conversion APP that works without WI-FI, and a translation APP from ECTACO (find it on-line) that also works WITHOUT WI-FI.  Google has a translation APP but needs WI-FI which doesn’t help you in the grocery store, flea market, or asking directions. The ECTACO costs $60+ dollars but was worth every cent.   Facebook was a constant contact between home, the hospital and the world.

I also had a Nikon camera with me at all times. There was always something interesting to take photos of.  I got a special connector from Amazon which connects the camera to my Nexus 7 tablet and uploads the pictures into a Gallery on my tablet.  I didn’t take a computer to upload them into.  This worked wonders.  Brooke would tell me what she was looking for as a special souvenir for someone, I would go to the market and take pics of various ones, upload them into the Nexus, Facebook them to Brooke, she would pick the one she wanted, and I would go to the market the next day and buy it. Worked great!!

Currency conversion:

Your currency conversion APP will be your best friend – but eventually you will be doing it in your head. A ruble value varies day to day, but on the average it is 31 cents.  When a vendor told me the price of something I mentally multiplied it by 3 and added a few dollars to know what the US Dollars equivalent was.  It’s confusing because rubles have zeros everywhere and you think you’re spending tons of money but you’re not.  Ex:  1,000 = $ 30.00.  500 ru = $ 15   100 ru = $ 3.00.  You get it.  At the market EVERYONE will bargain for the price with you.  If you see something you want, decide how many US Dollars it’s worth to you, convert that to rubles and start the bargaining.  Pause while you’re calculating and the price starts going down because they think you’re going to walk away.  I got very good at it – you will too.

Atm Machine / Bank Fees:

There are ATM machines in the lobby of the hotel.  Only one has an English option.  You use your bank card, then wait, (I didn’t but I learned) and a choice of English will come up.  Your bank will charge you a fee each time you use the machine just like in the States.  IMPORTANT:  Before you go to Russia, talk to your bank and make them aware that you will be using an ATM in Russia during a certain time. They will put a note on your account so they don’t think your identity has been stolen.  Find out what your bank’s international ATM withdrawal limits (withdrawals per day, amount per day) and their fee to you for using an international ATM.  There is a place in the lobby to get large rubles broken down into smaller denominations for shopping.  I didn’t like using coins but the grocery stores and deli prefer it.  You can use a  credit card at the grocery store if you buy a lot of items.

SUPER IMPORTANT:

Find out from your bank if they charge an international transaction fee for when you transfer money to the hospital from your US account.  Some banks charge 10% – that’s $4,000 !!! Also, the hotel bill, if it’s held with your credit or debit card, is there a bank fee for that?  Again, we found it was going to be 10%. Some banks have no fee.  Check it out!!  We began drawing cash out of the ATM each day so we could pay the hotel bill in cash and not incur the 10% fee.  Banks vary GREATLY.  To avoid any fees when paying the hotel bill, pay for the entire balance in cash (rubles).

Language:

This was definitely the most difficult part of the trip – but manageable.  The most important Russian word you must learn is Thank You (pronounced “spuh-see-buh” in Russian).  Here, again, your translation APP is invaluable, unless you’ve been more adept than I, and have learned the key Russian phrases.  If you want to know the price of something just ask “rubles ?”.  Charades work sometimes.  Very few people speak English, some say they do but they don’t.  If you order room service first ask “English ?” And they will put someone on who speaks a little.

Hotel:

We stayed at the Best Western Vega Ru, the closest hotel to the hospital.  An important item I found out the hard way.  When you enter your hotel room you insert your room card/key in the device on the wall which turns on the power in your room.  Any time you leave, be sure to take that card with you or you won’t be able to get back in.  BUT if you leave a tablet or phone on the charger, this will turn the power to the charger off and it won’t be charging.  NOTE:  There is one electrical power strip that stays on at all times for the purpose of chargers.  It’s located beside the desk in most rooms.

Security:  Absolutely no concerns.  There is a guard at the bank of elevators who, until he’s familiar with you, will ask to see your sign-in paper that shows your room number.  When you get to your floor, your key will get you from the elevator bank and onto the floor to access  your room.  Each floor has a specific key so people cannot roam from floor to floor.  And finally you will use your key for the door to your room, once inside put it in the wall device to turn on the power and you’re good to go.

There are 3 TV stations in English.  They are primarily news shows and documentaries.  They are channels 20, 21, and 22.  Their news is quite refreshing – they actually report facts with no innuendo or interpretation thrown in.  It’s world news and you find out things are messed up everywhere, not just where you live. J

If you have trouble with WI-FI going down, there is a number for IT in the front of the Hotel Services book on the desk.  If they offer to move you to another room for better service, tell them you want the IT guy to check the new room to make sure service is OK there before you move.

This hotel, made my trip the positive experience it was.  It is as “Americanized” as possible and it made my life so much better.  All signs in the hotel also had English on them.

Food:

Always mindful that the bulk of our expenses were due to generous donations from friends and family, I tried to be as thrifty as possible.  After finding that on a daily basis I could not eat the hospital food (even though it was free, the cab ride each day added up) – I searched for a more cost-effective way.  The hotel has an extensive breakfast buffet from 7 to 11 every day.  It is 500 rubles – $ 16.00.  Pricey – but I ate there at 10:30 some days and never needed anything more the rest of the day except maybe a snack from the grocery store – cookies, crackers, cheese – etc.  It actually saved a lot of money and was excellent with a huge variety of choices.  All items were labeled with English also.

There is a mall, by the name of AST, within walking distance of the hotel – where there is a grocery store on the ground floor.  I bought cheese and crackers there, as well as chocolate and cookies.  KFC is on the 3rd floor. The prices are low compared to US.  There is a deli very close to the hotel – open 24 hrs. per day – got my Coca-Cola there…cheaper than the hotel.  A restaurant Brooke and I went to that was excellent is located beside the hotel (exit the front entrance of the hotel and make a right, then head across the plaza.  It is straight ahead.  It will say Pectopah on the left and – Sole Mio in the center and has a sunrise graphic.  It has all kinds of wonderful, fresh food, prepared from scratch while you wait, and they have Italian pizza (take out if you like) that is to die for.  All restaurants have menus with English translations on them.  At KFC you can ask for the English menu and point to what you want.  There are 3 restaurants in the hotel.  They’re a la carte so it can get expensive but portions are large.  Anything like ketchup, sour cream, mustard, etc. you must ask for and pay extra.

Well, that’s about it.  There’s a lot more but these are the basics.  Don’t forget my offer to help you along the way- anything from getting prepared to coming home with miracle results –   you will never be alone there.

IF YOU ARE A PATIENT TRAVELING ALONE:

The A.A. Maximov Hospital, Moscow, is the perfect facility to accommodate patients traveling alone.  You will be taken care of from your admission to the hospital until your departure.  DO NOT be concerned that you are traveling alone.  It is a non-issue.

Tips:

–  Make certain that, if you need it, you arrange for a wheelchair at the airport of your departure and at your airport of arrival in Moscow.

–  A bellhop (they are not on duty until 8 a.m.) will be available at the hotel to transport your luggage to your room.  If you call the front desk when you are ready to head to the hospital, they will also arrange for your baggage to be taken to the lobby.

–  Contact the Concierge ahead of time (night before) to arrange for your taxi from the hotel to the hospital.  That way, it will be ready for you and on time.  Make sure that you have the name, address and phone number of the hospital (in Russian) with you to show to the taxi driver.  Dr. Fedorenko supplies this to you via e-mail.  If he hasn’t yet, contact him closer to your date of admission.  Here’s a copy in case you need it in a pinch:

Москва, Ул Нижняя Первомайская 70, Национальный медико-хирургический центр им. Пирогова

Клиника гематологии и клеточной терапии им. Максимова

Федоренко Денис Анатольевич Моб +7-915-290-00-67

–  If you have a free day or so before your admission, and if you haven’t already brought them with you, try to get out to a deli or grocery store to stock up on any snacks you might want while hospitalized.  Salt, pepper and cinnamon are must-have items, as well as any other condiment that you prefer (ketchup, mustard, etc.).

PS:  I have tailored this to the US audience as far as money – I’m not familiar with pounds or Euros – but I am aware that HSCT patients are headed to Moscow from all across the globe, so I hope you all find this information useful.

If you have any additional questions, please feel free to contact me at the e-mail address above, or Brooke on here or on Facebook.

Connie Taylor, aka Moscow Momma, mother of Brooke Slick who left her MS in Moscow

The original "Moscow Momma"!

The original “Moscow Momma”!

Call Me, Maybe…

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Call Me, Maybe…
My view for the last week as I blog at all hours of the night.

My view for the last week as I blog at all hours of the night.

It’s been almost six weeks since my arrival in Moscow, and, here, on the eve of my departure, it’s hard to believe what has taken place since that first day.  So many fears.  So many expectations.  So many hurdles to cross.  And, one by one, each mission was accomplished.  Not always easily, but, ultimately, seamlessly, accomplished.  Never, could I have predicted the lack of complications, absence of major discomfort, total lack of need for any kind of pain medication, or a transplantation day where I was up and out of bed within about 15 minutes or so, smiling and wondering where lunch was.   As much as a part of me wants to believe that it was fate and a guiding hand…and I do, I also know that it was the complete selflessness of Dr. Fedorenko and his staff that made every effort to make sure that every moment of every day that I was safe from harm, infection and undue risk, both medically, physically and psychologically.  My overall happiness was #1 on the list of the staff’s priorities.  As part of Dr. F’s parting pep talk, he said my mantra should be “Good attitude, good food and physical therapy!”.  He said that it is a “whole body experience” and that we are not just treating the disease but the entire person.  I really do love the way this man thinks.  He just gets its.

What can I expect from this point forward?  First, the ultimate goal has already been accomplished.  The MS has been halted, as was evidenced on my MRI, taken the day before my discharge.  I saw the films myself, and I can honestly say I’ve never seen anything quite like it.  At least not in the last 12 years or so.  The before and after pics (comparing my MRI done pre-testing week) were dramatically different.  From 10 enhancing brain lesions, to no enhancing brain lesions.  Even I’m impressed…GO BRAIN!!

What kind of reversal might I see and when?  The average turnaround time for reversal of symptoms to present themselves is two years, however, that could start happening soon after the initial 3-6 of months of initial healing, maybe even before.  Based on the documentation of other HSCTrs, symptom reversal kind of creeps up on you.  One day, you’ll find yourself being able to do something that  you haven’t been able to do in 3-4 years, and initially you won’t even notice and you’ll turn around and be…”Wait a minute!  Did I just do that?”  I will begin physical therapy approximately one month from now and have been blessed to be able to see a hematologist/oncologist in Pittsburgh, who specializes in transplantation, and will be monitoring my bloodwork to make certain that all of my levels are on par.  A large part of my recovery has nothing to do with the transplant and everything to do with recovering from the effects of chemotherapy.  It’s a serious drug and requires serious attention and time to recover from it.  Lots of napping, and healthy living are on my agenda.  Let’s not forget, I will also be having 3 additional infusions of Rituximab (the b-cell attacking drug) as a precautionary measure over the next year.  A small price to pay for piece of mind.  I must give fair warning, that I will be scarce during the next few months.  I have been instructed that I can feel free to venture into wide open spaces without a face mask, but, to avoid enclosed spaces that are heavily populated and to avoid anyone who is sick or have been exposed to someone who is, including colds, flu, etc.  The good news is, that way I will be able to keep my Sunday morning grocery shopping dates with my husband.  It’s a tradition of ours that I’m happy to keep.  My immune system is that of a newborn and I’m supposed to treat it as such.  My advice is, as much as I’d love to have everyone over for a big stem cell blowout party, I’m going to have to opt out.  Hence, the “Call me…maybe”.  If I don’t pick up, hopefully, I’m napping…strict orders!!  Though I will not be continuing to blog on the daily, I will try to maintain regular submissions as the weeks pass.  There’s no way I’m going to leave the cheerleading squad heard round’ the world high and dry.

CAN WE TALK ABOUT SHOPPING, NOW?

Let’s talk about what mom and I did today.  Months ago, when I was planning this trip, I, of course, Googled “Moscow” and “malls”, and came across the most architecturally fabulous mall I had ever seen right off of Red Square.  It was called GUM (pronounced “goom”…liked “groom”), and if there was any chance that I could see it, I was going to make every effort to do so.  That dream was realized today and there are pics below to prove it.  It did not disappoint and I was surprised to find that there were even shops where the average Joe could afford to pick up a special gift to take home to the States.

MY GUM COME TRUE!

Mom caught a glimpse of me from an upper floor.

Mom caught a glimpse of me from an upper floor.

GUM Mall, Moscow.

GUM Mall, Moscow.

GUM Mall, Moscow.

GUM Mall, Moscow.

GUM Mall, Moscow.

GUM Mall, Moscow.

The Ugg Strore.

The Ugg Strore.

GUM Mall, Moscow.

GUM Mall, Moscow.

For all of you Sex in the City fans...

For all of you Sex in the City fans…

GUM Mall, Moscow.

GUM Mall, Moscow.

The fountain where they were serving yummy ice cream.

The fountain where they were serving yummy ice cream.

Dramatic architecture.

Dramatic architecture.

Though many of the stores were high-end, there were many reasonably-priced stores as well.  There was even a Timberland store.

Though many of the stores were high-end, there were many reasonably-priced stores as well. There was even a Timberland store.

St. Basil's Cathedral on Red Square...from the taxi.

St. Basil’s Cathedral on Red Square…from the taxi.

Tomorrow morning, back to the United States, the Pennsylvania countryside and the mountain view that will help to heal my weary bones.  Don’t worry, I’ll be back on in a few days to let you know how it was navigating through the airports, etc.  In the meantime…

Peace, love and gratitude…from Moscow.

Wrap it Up…I’ll Take it!

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Wrap it Up…I’ll Take it!

What day is it?  What’s today’s date?  Is it June yet?  Most importantly…what time is it?  Because, it is STILL daylight outside!!  You’d think that once I was outside the confines of the hospital, I would have a much better grip on the minute details of day-to-day life…not so much.  I’m in a foreign country, different time zone, different sun time (it stays daylight until about 10:00 p.m. and starts getting daylight around 3:00 a.m.).  All the while, this chemo-battered body is trying to play catch up and keep up.  I must tell you, it takes careful planning and the willingness to be flexible (not my strong suit), but it can be done.  Yesterday, was a perfect example of that.  I had already enjoyed two days of rest and only short treks in and out of the hotel.  But, yesterday, I was on a mission to finally be able to safely navigate across the plaza, up and down many unrailed steps, and across the street to the mall that held most of the souvenirs that I had on my wish list of gifts for family members as well as a nice selection of scarves to feed my addiction, which now includes using those scarves (inset pic, top left) to cover my newly bald head.  Mom and I started out at 10:00 a.m., me promising myself, that it didn’t matter how long it took to cross the great divide, as long as I made it…and I did.  Once inside the mall, there were escalators and elevators that made navigation much simpler, but I’m convinced that they must have some kind of ban on benches in malls. because there are none.  This mall (AST Mall), though rather lackluster, was air-conditioned, 3 stories high and included a food court, complete with a KFC and plenty of tables for resting in between souvenir runs.  And, let’s not forget, one of the food vendors served fountain Cokes.  This food court served as my Pit Stop for the course of the day and was the perfect venue for this recovering HSCTr to reach all of retail therapy goals.  Well, after about 3 hours of shop, rest,  Coke, repeat, all of the boxes had been checked off my list and we had only one more thing left to do at this mall…a visit to the grocery store that mom had been going to for the last month.  It is in the bottom floor of the mall and has everything soup to nuts to liquor…lots and lots of liquor (see pics below).  We finally decide to make the trek back to the hotel.  As we leave, we realize that it’s raining outside and we have no umbrellas.  Rain has never felt so good on a body that felt like it was wilting from the humidity.  As soon as you exit the mall and cross over toward the hotel, you are met with obstacle after obstacle in the way of uneven surfaces and large stone steps.  So, one large stone step at a time we went.  You might be thinking by now “What’s the damn big deal about the uneven surfaces and the steps, Brooke?  Aren’t you all fixed now?”  “When you had your transplant, didn’t somebody wave some kind of magic wand and everything is 100%?”  Unfortunately, that’s not how this gig works.  For at least the first 3-6 months on average, your MS symptoms worsen before they begin to improve, and then an additional average of 2 years, possible up to 5 to see the maximum reversal/stabilization of symptoms.  That’s right.  You know that wobbly, off-base, limpy, foot-droppy Brooke you always see?  Well, turn her disability dial up about 4 notches, and that’s what we’re dealing with right now.  Is that going to stop me?  No.  But, it is going to slow me down, considerably, and it makes me have to be incredibly careful with every step that I take, so as to avoid a tumble that could lead to injury.  IMPORTANT!  Let us not forget, that the MS has been HALTED.  I simply need time to heal.

This was just the first half of the day.  We get back to the hotel, and I receive a message from my friend, Kristy Cruise, from Australia, who is also here in Moscow for her HSCT pre-testing.  She says that she’s done with all of her testing for the day, and that she’s going to see if the doctor will spring her from the hospital in order to have dinner out.  You see, yesterday was her birthday, she was half a world away from family and friends and alone in a hospital room.  There was just no way we were going to let that happen.  Several hours, a few tactical moves and one female Candy Crushing taxi driver later, and Special Agent Koala Bear, mom and I were sitting at the loungy, white and linen themed, couch-laden restaurant enjoying the best beef stroganoff and Tiramasu that I’ve ever had.  Kristy opted for ice cream in lieu of birthday cake.  When all was said and done, Kristy was securely delivered back to the hospital (after mom threatened the cab driver that he had to stay with her until the guards let her back into the hospital!), and it was around midnight when we made it back to our room and promptly collapsed onto our beds.  Today, we had an early breakfast at the buffet here in the hotel, and I plan on spending the remainder of the day resting, reading, napping, blogging and arranging my belongings for our departure on Friday.  On tomorrow’s agenda?  Red Square, and the GUM Mall.  This mall is as much about the architecture as it is about the shopping and I can’t wait to see it.  In the meantime, here are some pics from yesterday’s adventure.

SHOP, BUT DON’T DROP!!

STEPS!

STEPS!

STEPS!

STEPS!

Me sitting at the base of the steps!

Me sitting at the base of the steps!

AST Mall

AST Mall

AST Mall

AST Mall

AST Mall

AST Mall

AST Mall

AST Mall

The Food Court at the AST Mall.

The Food Court at the AST Mall.

The grocery store at the AST Mall.

The grocery store at the AST Mall.

Bottoms up! At the grocery store.

Bottoms up! At the grocery store.

More grocery store.

More grocery store.

IT’S TIME FOR A BIRTHDAY PARTY!!

Our birthday dinner table.

Our birthday dinner table.

The inside portion of the restaurant.

The inside portion of the restaurant.

The beautiful birthday girl!

The beautiful birthday girl!

Kristy's birthday ice cream.

Kristy’s birthday ice cream.

My Tiramasu.  Best ever!

My Tiramasu. Best ever!

Stuffed!

Stuffed!

A too quick goodbye to a very long day.

A too quick goodbye to a very long day.

Another day down, and two days until we lift off for the States.

Peace, love and scarves…from Moscow.

Sign, Sealed, Delivered…

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Sign, Sealed, Delivered…

As much as you all may have thought that this trip was supposed to have been all about me, saving myself from my MS, what you may not have known, is that it’s always been about a whole lot more to me.  I knew that living and blogging this experience in real-time may be the one and only chance for me to directly touch the lives of others who are having or considering having HSCT for HALT their MS as well.  It’s a mission that has kept me focused during my treatment and has served as a soulful reminder of this rare opportunity that I have.  Lucky for me, today, I had an up close and personal opportunity to assist a friend and fellow HSCTr, Kristy Cruise’s, cohesive entry into Pirogov Hospital for her pre-testing.   That first day there is full of so many unknowns, and being able to be help to make that as comfortable for her as possible was truly a labor of love.  I’ve even already had the opportunity to identify some of the food she’s been served .  She sent me the distress picture early after lunch with the “What do you think this is?” tagline.  Of course, I let her know that it was a chicken croquette and they were quite tasty.  ha ha    I have included a couple of pics of us right before we left the hotel for hospital.

About to head to the hospital.

About to head to the hospital.

Delivering Special Agent Koala Bear to the hospital for pre-testing.

Delivering Special Agent Koala Bear to the hospital for pre-testing.

With Kristy successfully placed, and her already being ushered off for testing, Dr. Fedorenko had requested a 3-day post-discharge exam and consult.  I passed  with flying colors and he proceeded to continue to warn me that I would be suffering from the side effects of chemo for at least 3-6 months.  So far, my main side effects from that have been dizziness and fatigue quelled only by periodic naps.  He reminded me that I only had to wear a mask in a crowded situation, such as the plane ride home or an enclosed space with  groups of people.  I was a little surprised when he said that I would not be able to go swimming until the last week of June, due to potential exposure to bacteria in pool water.  That was just fine with me.  I usually don’t get in until the first week of July, anyway.  One very pleasant tidbit of information was that he said there was no reason why I couldn’t drink wine.  Really?  I mean, REALLY?!!  I do love the occasional glass of very dry red, and, as summer is upon us, the thought of a crispy Reisling on the patio in the evening makes me shiver with excitement.   For some reason, I had just assumed that it might be at least 6 months until I was able to partake.  Who knew?!  He also said that I can begin driving, as soon as I feel comfortable doing so…perfect!

Dr. Fedorenko and I said our goodbyes and I headed back to hotel to meet with mom.  Our goal for the day was to try to get me to the mall across from the hotel.   Whether it took 15 minutes or an hour, I was determined to get there.  We opted to wait until later in the afternoon for the temps to cool down a bit and we headed out across the plaza, down two sets of long stairs, through a parking lot, and just as we were about to cross the street to the mall, I realized that #1, I was already exhausted from getting up early, #2, my feet were sore from yesterday’s trip to the Market and, #3, that the 2 or so hours that I had intended on spending in that mall were more likely to be an unproductive 1/2 hour.  I was close enough to reach out and touch it (see pic), but, I know when to cut my losses, and tomorrow is another free day for us.

So close...yet so far.  Not a happy camper.

So close…yet so far. Not a happy camper.

We opted to head back to this cozy little restaurant we’d wanted to try out that is right outside the hotel, and we would give the mall another try bright and early tomorrow morning when this Energizer Bunny’s batteries were fully charged.   Below are a couple of pics from the restaurant called Sole Mio.  The food was fantastic, the prices were reasonable and the service was impeccable.

This lovely little restaurant, Sole Mio, also has fab takeout pizza. Pectopah, means "restaurant".

This lovely little restaurant, Sole Mio, also has fab takeout pizza.  Pectopah, means “restaurant”.

Cheese balls with ham and melted cheese inside.  Delish.  Love the presentation!

Cheese balls with ham and melted cheese inside. Delish. Love the presentation!

The restaurant, Sole Mio!

The restaurant, Sole Mio!

Mom and I enjoying a little Coke before dinner.

Mom and I enjoying a little Coke before dinner.

So, yet another productive day in Moscow as I continue to build strength while trying to incorporate an appropriate amount of rest.  It’s a challenge for me, but well worth the sacrifice.  Tune in tomorrow, at a time unknown to see what kind of trouble mom and I might be getting into.  As the week progresses, I will be addressing what I can expect upon my return to the states in the way of recovery, reversal, and all around expectations of myself and my plans for rehabilitation.  This, my friends, is just the first leg of the race.  And many miles to go…

Peace, love and cheese balls from Moscow.

Tip Toe Through the Tulips…

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Tip Toe Through the Tulips…

Today, was my “challenge” day.  The day, that, no matter what, I promised myself that I was going to attempt to step outside of this hotel, across the street, down a long set of stairs, though a large parking lot and into the Izmaylova Market which is situated adjacent the hotel.  This Market is one of most popular outdoor markets in Moscow and provides one-stop shopping for souvenir-seeking tourists.  From fur hats, to nesting dolls, jewelry to pottery, this is the place to go for best finds and bargains.  For my entire month in the hospital, I’ve been watching from a distance as my mother has memorized every inch of this Market and befriended most of the vendors.   Today, she was going to be my houndog, and as we soon found out, would be a shoulder to place my hand on, as my dizziness, though it has decreased very slightly, refuses to relent.  But, did you really think that was going stop me from the art of the deal?  I knew that as long as I took it slow and didn’t over-exert, that there would be no harm done…kinda.

It was a beautiful, crisp, windy day and 70 degrees.  I made it the entire way to the Market and did manage to “tip toe” over many an uneven surface and curb to cut through to many of the vendors.  We decided that we were going to rest for a while and enjoy my fave…an icy cold Coke.  Just about that time, my fellow HSCTr, Kristy Cruise appears ready to find a few bargains of her own.  And we did!  (pic below)

Kristy &  me, Moving Mountains for her MS in Izmaylova Market, Moscow.

Kristy & me, Moving Mountains for her MS in Izmaylova Market, Moscow.

The market was bustling with tourists, and I had to watch every single step, so as not to stumble.  My legs are still very weak, and a tumble could have happened in a split second.  But, it didn’t.  I had nowhere to be, no timeframe, and absolutely no desire to leave there without exactly what I wanted.  I could sit in the hotel room the rest of the week and rest, but, I’ve been “resting” for month.  By the time that we made it back to the hotel, I could barely lift my right leg even to clear the ground.  I literally hobbled into the hotel lobby as Mom and Kristy poured me into the elevator and deposited me on the edge of the bed in our room.  MISSION ACCOMPLISHED!  Will I be attempting the same feat tomorrow?  No, I will not.  Actually, early tomorrow morning, I will be accompanying Kristy to the hospital so that she can be admitted for her pre-testing.  It’s quite a maze of guard gates, tunnels, administrative office, etc., and I have been instructed exactly where to take her by Dr. Fedorenko.  In addition, he will be supplying me with all my medical records to take back to the States.  One last goodbye to the doctor who facilitated my future of freedom.

After leaving the hospital tomorrow, I will be resting and relaxing at the hotel, most likely eating at the hotel restaurants for the convenience of it.  The restaurants in the hotel provide a wide range of menu choices, menus in English and prices to suit even the smallest budget.

Though my thigh muscles feel like they’ve been beaten by a meat clever, it’s a good kind of pain.  Those muscles haven’t been used in so long, and they needed a good kickstart.  I will leave  you with a bunch of fun pics from the Izmaylova Market.  Seriously…who doesn’t like to go shopping?

On the way to the Market.   Wine!!!

On the way to the Market. Wine!!!

Our favorte pizza place!!

Our favorte pizza place!!

Outside of Izmaylova Market.

Outside of Izmaylova Market.

Lots of fur hats, scarves and headbands.

Our Coke break venue.

Beautiful Turkish and Polish pottery.

Nesting dolls.

The hustle and bustle of tourists.

Pillow Palooza!

One of my purchases.  A Turkish platter.

One of my purchases. A Turkish platter.

My first Russian scarf purchase (linen).  Will it be the last?  Hmmm.

My first Russian scarf purchase (linen). Will it be the last? Hmmm.

Peace, love and retail therapy…from Moscow!