Moscow Journey-December 11, 2014

    I continue to use the wheelchair (lent to us by a close friend) and I walk with my back bent like a 95 year old.  On the bright side:  I've lost 24 pounds since I weighed in the second day in Russia.  For how many years have I fought to lose weight?  Of course, when I weighed 123  pounds in high school, I thought I was fat!  In any case, I now weigh what I weighed four years ago when M.S. Came back into my life.  I can't enjoy the fact that I've lost weight because I'm so inactive that nothing is toned.  I just live on the belief that I will heal, begin to walk normally again, and my fractures will heal.  Here's where my faith in God comes into play.

Moscow Journey- December 2, 2014

     I saw the orthopedist today, and the pelvic fracture is"healing nicely".  He saw no signs of another fracture, so I guess all my pain, whining, and complaints are in vain.  I told him about having difficulty straightening my left leg and problems in walking. The doc explained that using the wheelchair and sitting too much causes the problems I'm having with my left leg, BUT he cautioned about being too enthusiastic about walking!  Soooooo, I need to walk to keep my leg limber, but I must be careful not to overdo it!  I need to use my level of discomfort to determine how much is too much.  I am grateful to know I have no new fractures.

Moscow Journey- November 26, 2014

It turns out I do have a hip fracture but it's in my left hip and the right hip is the one that is/was hurting. Did you reread that?  The right hip stopped hurting after 2 X-Rays, 2 MRIs, and 4 doctor's appointments.  I was told that I should sit or recline to let the fracture heal.  I thought, "That's all I do anyway."  Well, one has to move if one is going to live a normal life, so on my way from the wheelchair to the throne, I had a small fall.  Of course, it was on the left hip where I already have one fracture.  By all signs, I might have another fracture.  The hip and upper thigh are swollen and are extremely painful. I called my orthopedist today, and I was told to come to my scheduled appointment on Monday.  As if I would miss it!  I'm praying it is a very tiny fracture because the doc mentioned hip replacement if I had another injury.  I've had my share of hospitals this year!

Moscow Journey-November 15, 2014

      Well, I seem to be the queen of bad luck.  After getting Dr. Fedorenko's recommendation that I have X-RAYS because of my extreme hip pain, I did so and learned I have three fractures in my spine; they did the hip x-RAYS later and don't have those results yet.  I have MRI scheduled Monday morning and apt. with orthopedist Mon. Afternoon.  Looks as if I'm headed to procedure to inject cement(?) in vertebrae to prevent collapsing.  I'm okay with this because in three days I've gone from walking with rollator to being unable to lift right foot off floor due to excruciating pain in lower back; therefore, John is pushing me everywhere as I sit on the seat in rollator. I need to find a wheelchair for temporary use until I have this procedure. Praying I'll be able to walk again after the procedure is done.  Your prayers are appreciated.

Moscow Journey-November 13, 2014

     Well, after being positive in my last post, I'm back to whining again.  Terrible pain in both hips to the extent I've declined attendance at several events I really wanted to attend because It hurts so badly to walk, even with the rollator. At this point I'm not ready to say I regret having HSCT, but I'm really ready for some positive results.

Moscow Journey-November 3, 2014

I just read my post from Oct. 3 which makes me so pleased with the progress I'm making.  I hurt so badly from the hip and back pain I was actually taking Percocet every four hours for the pain.  Well, now I take one Alleve every 24 hours, so my risk of becoming a drug addict is alleviated! The pain I have now (usually back) is a level 2 or 3 as compared to a 10 a month ago.  God's blessing again!  I see the chiropractor and PTA twice a week.  I practiced walking with the cane, and on Thursday I actually walked about 20 feet with my cane in my hand but not touching the floor.  Tonight we went to a Sunday School dinner and were there for about 3 1/2 hours.  I'm joining the living again!

Moscow Journey, October 9, 2014

Well, I didn't plan to be posting again so soon, but I just want to say,  Goodbye Bursitis!  The pain from the bursitis seems to have left, and I can't express how great that feels.  I am still having some muscle spasms in upper left leg-referred pain from hip, I'm told-but not having the hip pain will slow me to make progress in healing from the HSCT and, hopefully, regain and surpass the walking skills prior to Moscow.  My physical therapist is aiding me in balance and walking and says she can see improvement, so I'm encouraged.

I just felt compelled to share since I've done so much whining in my last few posts.

Moscow Journey, August 28, 2014

      Well, it's been an interesting week of medical testing all to reveal" I'm not normal" but there is nothing wrong with me.  Because my temperature has been fluctuating between 97 (what's with that) and 99.9 on occasion, I called the "in-call"doctor last weekend to ask if he felt I should follow HSCT protocol and go to the emergency rom if my temp reaches 100.4.  He responded,  " Use your best judgment."  I wasn't sure what to do with that since my temp did go to 100.  On Monday, I talked with my doctor's nurse (he is out of the office for two weeks), she consults with another doctor and then tells me I have an appt the next day for a chest X Ray and an appt with the doctor. To make a long story short, I was at the doctor's office or lab Mon, Tues, and Wed.  The doc said I'm "not normal", and I told him I knew that. I'm aware that I'm probably the only abnormal person in this town who has had a stem cell transplant.  I do appreciate the doctor's efficiency and thoroughness, but I can't imagine what all these tests will cost.  Everything turned out good, so I just have unusual temperatures.
     Ironically, yesterday, the only day I hadn't had to go to the doctor's office, I felt the closest to "normal" I've felt since having HSCT. I wasn't as fatigued, balance was better, not as much brain fog, and I just felt better.  Yesterday, John was preparing to build me a platform beside our bed to help me get out of bed (because our bed is so high off the floor), and when I took a nap I actually figured out how to get my own feet up on the bed and how to safely get out of the bed.  Those are such simple tasks for most people and me before 2010, but they have become major difficulties for me.  I hate that John has had to become my caregiver rather than my husband.

Moscow Journey, August 14, 2014

I had my first check up with my doctor since returning from Moscow.  I had blood work and everything looks good.  I don't have to worry about having lowered resistance to infection and can be out and around as long as I have the stamina.  The doc said chemo fatigue is common. i should be getting over it AND exercise will help with that.  That means I can't find any reason to avoid exercise!  Oh, I weigh ten pounds less than when I arrived in Moscow.  Now I just need to lose ten.....or twenty more pounds!

Moscow Journey, August 11, 2014

Wow, since I am back home and in my "normal" environment, it seems as if it has been a long time since I've written in my blog.  We have been home two weeks as of today, and yesterday was the first day I've gone all day without a nap.  Maybe that means I'm healing?  John and I see small steps of improvement every day.  Of course, to most " normal" people, I am still feeble.  I have accomplished getting out of bed and out of my trusty old rocker fairly easily.  John had to help me when we first got home.  Being in bed in the hospital leads to more muscle weakness, so I do have that to overcome.  John acquired a new good habit of walking while in Moscow and is continuing to do that.  I am still using my rollator, and my goal is to walk with my cane, which I was doing before March, and to actually take walks with John.  That would be such a good thing for my weight and my mobility.  I am trying to be patient, which is so difficult, because the healing process is erratic and like a roller coaster.  Progress and then regression, so I will try to take it as it comes.

I have my first appointment with Dr Gee on Thursday and have my first blood tests.  I look forward to hearing what he has to say.  I believe I am his first stem cell transplant patient.  A new medical adventure for him and me.

MOSCOW JOURNEY, JULY 27, 2014

Well, things move along and I count my blessings.  John and I partake of a HUGE breakfast buffet early each morning, wonderful food, and then really don't eat again until we have tea and dessert about 6:00 pm.  This has worked out so well for us.  Yesterday we visited the international market and made a few purchases.  If I work up the energy today, we might go back.  It's all about the energy levels.  It is not unusual for me to take two naps a day.  Hope to regain strength upon return home.  I still feel so blessed to have found Dr F when I did and to be accepted when I was.  My scripture this morning was all about hope, perfectly fitting with my blog.  I live on faith and hope that God chooses to heal me and gives me the initiative to do my part!  Thanks for following me.  Only two more nights here!  Please get us home safely, Lord, and heal those we leave behind and who follow us.

Moscow Journey, July 25, 2014

Well, I am officially finished!  The powers that be want more beds available, so they booted us out.  the room I had reserved and paid for at the Vega Best Western seems to have officially disappeared (28 floors of rooms?) but we have made such dear friends who aren't currently using their room and have graciously allowed us to use it. we only have four more nights and if Misha gets released, we will make other arrangements.

after being fed four meals a day (porridge, bulgar, oatmeal, calf tongue, delicious soups, we now have to learn to feed and pay for our own food.  we'll be OK!  it feels good to lie beside John in bed again and begin to eat like a regular fat American!

My condition has not changed dramatically although I am slowly gaining strength, slowly but surely.  dr F expects 100% healing and says much of it is up to me-mentally!  got to love this man.  Thank you, Lord, for guiding me to Dr F at this time for healing!

Moscow Journey, July 25, 2014

I think they are sick of us around here.  We were told we will move back to the Vega Best Western tomorrow.  Although I paid for 35 says in advance, when John came to stay with me in ISO, they seem to have lost all records of ours.  typical, huh? At least John and I have friends with a room there who is staying with huis wife in ISO, so he has offered their room to us.  We only need lodging for 4 nights as we'll fly out on the 29th.  if Wayne and Misha Need the room, we'll do whatever is necessary.  everything has gone so smoothly so far, it just can't go wrong now.  My main goal is to build strength.

we had another celebration of New Life tonight.  A young man from India was reinfused and celebrated his new birthday.  I love his parents and Bikrim. ,It is truly amazing how much alike we are, all over the world.

I cried to say good-bye to Ike and Barbara Nitus this morning.  They are from New Zealannd.  Truly delightful,people.  We feel as if we've made friends for life.  I pray God gives me the walking ability to go,visit some of these people.  What a man Dr. Fedorenko is.  I truly feel he is a saint of God.  This procedure, which could be offered soo many, is denied so many.  God, please use me as an instrument to help,others through this.  Good night, all.

Moscow Journey, July 24, 2014

We were told not to expect miracles but one can hope.  I,awakened this morning to the ability to rise out of bed alone, walk to the restroom, almost get back to the bed alone (John's long feet blocking me), and felt,like the"old Judi".  Not sure if she is the "better" Judi, but improved over what I was anyway.  My trunk strength is still weak and if  I am not careful, I slump.  I am sure Stephanie will help me work on that.  Sure wish I'd packed her to bring alone!  She's tiny and would weigh little to nothing.  I can't believe we'll be arriving home in five days.  It will seem surreal, just like getting,to Moscow!

  I lay down on the bed and swung my feet onto the bed by myself!  Another small victory.  John has been the most patient husband but I know he must anticipate some freedom.  What man wouldn't?Thank you, God, for the beginning of another beautiful day in Moscow!

Moscow Journey, July 23, 2014

Things are moving along quite rapidly now.  I had the last infusion of rituximab to kill off all rogue T and B cells causing MS, and then the last port was removed from my neck.  We are still having conflict over the motel bill which was paid in full before we left the USA.  John is still bunking with me but might have to find a room at another motel.  We are trying to just roll with whatever happens! I had 8 hours sleep with no sleeping aid, as did John.  I awoke to feeling more normally than in a while.  makes me think I might find a somewhat normal pace sometime.  cow tongue is the order of the day.  I'll pass.  the texture just looks like too much like Old Betsy!  I have grown accustomed to the soups they serve, and one kind man has supplied canned green beans that mix quite well with the soupy mashed potatoes.
  I awoke feeling stronger today and can see small incremental improvements.  I know these changes won't happen overnight, so I try to celebrate each change.  I know God brought me here for a purpose, and my job is to find and fulfill it!
   Love and thanks to all of you for your loving support.

Moscow Journey, July 20, 2014-I think

I usually sleep from about 9-3 and then wake for a little social,networking.  imagine my surprise to wake and read that one of dear colleagues died of a heart attack during the night.  She came from Australia with Stiff Person's Syndrome and CIDP.  SHE WAS SUCH A DELIGHT, ABOUT 39, with two adolescent children, an indomitable spirit.  This has definitely cast a gloom on everyone's spirits.  dr F and Anastasia have definitely been affected by this loss.
   On better news, I actually walked a little today.  We went outside in this beautiful weather and visited with our New Zealand friends.  I am still so weak from inactivity that my mobility isn't as good as when I arrived!  I will work to regain it.  Sweet Hatice, 34 yr old, encourages me to move!
Thank God for good numbers and that engraftment has begun!

Moscow Journey, July 18, 2014

Today was momentous because I was told that I am out of ISO.  That means for the first time in seven days, we were able to leave our room, go,down the hall, and attend another New Life party.  It is so interesting to meet so many people from so many areas of the world.  Because we have a common goal, there is an instant connection.  My blood numbers have risen nicely which means engraftment has begun.  Please don't expect me to come home skipping and jumping.  The theory behind HSCT is no chemo/no cure but it,is also,true no rest/no recovery.  That means I'll sleep,a,LOT when I return.  I will hate being a recluse but I'm afraid I will have to be for a few months.  I will be so eager to see everyone and hug and thank you for your prayers, but I'll be hiding again.  John will be my gatekeeper.  I will be eternally grateful for having had this opportunity when I got it and hope,to have the opportunity to make it more well-known and legitimized.  God doesn't mean for us to be sick!
   Thank you, Lord, for good news today.  You have paved the way every step and I am certain You will guide me every step from now on.
   I cannot to expect my peak of potential for 12-18 months, but I don't want anyone to expect an overnight miracle.  Thank you for following my blog.

Moscow Journey, July 16

So somehow I missed another day.  My platelets are still fluctuating wildly, from -6 to 30 to 4 to 16 to 12.  I refuse to worry about it because it is out of my hands.  god and Dr F have it under control.  I just lie here and recuperate!  My exciting day consists of sleeping, waking, FBIng, blogging, reading, and visiting with John.  I do have my daily vodka bath and room scrub down with fresh linens every day and four meals, one of which I've begun to skip.  Yesterday, I only ate oatmeal, vegetable soup, and fish soup and some nuts.  Sure wish I could maintain that small caloric intake when I return home!  Poor John had to help me shower this morning.  I am ashamed to admit that this a not a daily occurrence-far too much work leading to complete exhaustion.  The rest of my bald head is truly losing hair now and it clings to gauze with which i wash  my head.  It is exhilirating to be clean and to be tucked into clean linens.  Such small pleasures!
     I am still in the stage of neutropenia, which I've explained before.  I have zero energy and I've yet to see my blood readings for the day, so don't know if I have low platelets yet again.  dr F is always on top of things and responds appropriately.  He even gave me his cell number if I need a nurse to call him!  So now I wait for engraftment to occur.  When that begins, I'll know I am on my way!  I have lost 18-19 pounds!  I think,it's following me around on my booty!  Stephanie, it will take some serious toning to get this old body into anything resembling normalcy!  That's OK. If I am able, I will do it!

Moscow Journey, July 14, 2014

I had no platelet infusion yesterday so no major differences.  My blood count was better today, platelet count of 16 instead of 4, and I did receive another infusion of platelets.  I am now officially in the stage of neutropenia, which means I'm defenseless against bacteria, fungi, or viruses.  This is normal and means I will enter engraftment in two to three days when my new immune system begins to establish itself.  That's what I'm here for!  There might be some pain involved but the nurses are very responsive to that.  I don't dread that because it means my body is doing exactly as it is intended to do.  I'll just roll with it, use lots of visualizing, and prayer.

I know I have complained about the food some, but let me tell you the positives of a Russian hospital.  They have welcomed John into isolation with me, given him fresh linens every day, plus white P.J.s, which I call his scrubs, fed him, offered him the protein drinks I am required to drink, and graciously allowed him to do much of my care.

They take vitals three times a day, do not wake you at night, unless absolutely necessary, provide four meals a day, maintain a very quiet facility, and are gracious and gentle in  manner at all times.  I understand they work 22 hour shifts and never seen to wane in energy.

It is so obvious that Dr F and Anastasia, his recently hired 23 year old MS patient (now cured)
Are elated at every celebration of the New Life created by the stem cell infusion.  No matter the stress placed on them, they are always happy, smiling, and affectionate with their patients.  Everyone who meets them falls in love with them and their passion for what they do.  I sure wish we could clone these two!

I thank each of you for going on this journey with us.  It means the world to me to have such friends pulling and praying for us.

Moscow Journey, July 13, 2014

NGO up on what day,of,this journey I'm on and so will merely gives dates. Perhaps my chemo-fogged brain can keep track of that!  John spent the night on a mattress and slept the best he has in years!   Taking sleeping pills has given me several nights sleep.  After chemo-disturbed sleep, this has been heavenly! I feel so much alert when I wake in the morning.  Poor John.  More conversation!!  Thankfully, we are both huge readers so spend a lot of time engaged in books.  I did finally get my platelet infusion yesterday, so I might attribute my feeling better today.  Of course, I am not doing jumping jumps yet.  A few leg lifts, maybe, and some strength training with my arms.  According to John's calculations, I have  lost 17 or 18 pounds.  I can hardly believe that as I feel like like a big flat blob.  I hope when I stand and put on my regular clothes, I'll be a svelte size ten!  Wow, Karen, maybe your dream of my leaping tables will come true!

Well, it looks like another lazy day!,  they awoke me for an infusion an anti-bacterial infusion at 7 this morning, so I lie in wait for a breakfast of porridge or oatmeal or cream of wheat and more bread, sometimes eggs.  I usually eat a half a bowl of porridge and a cup of tea, and John finishes the rest.  He has lost about 6 pounds.  We have resolved to change our eating patterns when we return home.  How many times have you, my friends, heard that?

I will no try to complete today's blog since it is only 7 pm here.  Maybe these 3:30 am blogs are part of the problem!

Moscow Journey- July 11, 2014

I mentioned before that I am mathematically challenged. Well, it ONLY took 25 days for us to remember that Russia is a day ahead of us, but I choose to stay on USA time, even if my sleep pattern doesn't. Today has been rather in eventful except for the fact that my platelet level has dropped to -6, which is not good. We evidently have a familial problem with this as my father had two siblings to an early death by hemorraghing ( sp) and we lost our precious nephew Bob to the same cause. This hasn't caused me any trauma as Dr F immediately ordered a platelet transfusion and I know of previous patients who also required this. I knew of this potential and am being very careful not to move around and potentially fall. The best English-speaking nurse came in and just,told me that John will be moving in here with me tomorrow. I loved that he was having some free time, but I know he's concerned about the low platelet count, I am sure. This means he'll be locked in here with me for the next 7-10 days. He's a loving man but, really, who can stand being locked in a 12x12 room with a talkative wife? I sure hit the jackpot when I married John. God could not have given me a better husband: good-looking, intelligent, patient, loving, good-dancer, great character, and, best of all, great Christian! I am truly blessed!

Moscow Journey-July 10, 2014

So I made my,little entry this morning and can't figure out how to edit so here we go again.  Dr F told me late morning that I start isolation TODAY.  This timing is determined by the dropping of my platelets, hemoglobin, and leucocytes to the point that my immune system is defenseless, so I have to escape any,potential of infection.  The nurses cleaned the room floor to ceiling, scrubbed the walls and windows, disinfected the furniture, removed all my belongings, instructed me how to wipe myself down with various solutions to disinfect my body, vodka for the body.  The nurse said in her halting English, " No glass". I got a chuckle out of that.
    I am also restricted in what I'm allowed to eat: no raw nuts, no yogurt, no dairy, not sure of what else.  I just try to eat what they bring and can never finish even half of it.  When I am served at 8:30, 11:30, 2:30, and 5:30, I never have time to build up an appetite!  I must also drink two protein drinks a day, totaling 800 calories!  I have lost about 6 pounds as has John.  That is my other restriction: No John!  Our quarters actually consist of two small adjoining rooms separated by a wall that is glass on the top half.  John will be able to come and wave at me, but I seriously doubt any conversation can be heard.  I told him to go see Moscow and enjoy himself.  We can email every day and I'll be well cared for.  There are several other husbands here whose wives will be in isolation, so there will be people with common interests.  I hope he takes advantage of his time.  He has been so dedicated to being by my side and assisting me at every turn, he needs a break!
   Now we wait for my numbers to rise to indicate that it's safe for me to be around people and I'll be released from ISO.  Previously, patients were kept in the same room but allowed in the halls and to have company, but a big change was announced two days ago.  This is a government hospital and it was announced that Dr F has to treat half Russian cancer patients.  All of us foreign patients have inundated the hospital and Russian patients are being excluded.  That means patients are moving out of ISO to the second floor and sharing rooms.   You would have thought the sky was falling.  Dr F and Anastasia are both so thrilled to be helping people regain their abilities, it is distressing to have to make adjustments and listen to the complaints of patients.  Pray for them and  this,program please.

Moscow Journey July 10, 2014

      Wow, where do I begin.  This has been such a day of new life.  When I awoke and walked to,the bathroom, with my rollator of course, I noticed a new stability in my walking gait.   Then when I returned to the bed, I did my usual pattern of slinging my right knee onto the bed and swiveling to sit-strange, I know.  I have not been able to get into bed that way for two years, but I did it,completely obliviously.  (Forgive my IPad for being comma happy tonight).  When I lie down in bed I can lift my right foot onto the bed, but John has to slide it over into position and then lift my left foot onto the bed.  Well, this morning I easily lifted  both feet onto the bed and to celebrate did a few leg lifts (.yes, Stephanie, 3 sets of 12 And higher than usual) John and I decided to take a stroll outside to enjoy the cool brisk breeze before they lock me in ISO tomorrow or Friday.  Once again I surprised myself by being able to walk about 300 feet or more.  John jokingly said he had trouble keeping up with me. ,with that man's height, he has never had trouble keeping up with me.  We attended another New Life celebration for two more people who received their cleansed stem cells.
     Oh,  John brought me a subway sandwich for lunch, which was immensely tasty.  I have now eaten Subways from Maine to Montana to Wyoming to California to Moscow.  I should be able to get a country song from that.
    I've said it before and I'll say it again and again:  God led me here and is blessing me through it.  To God be the glory!

Moscow Journey, Day 18 -July 9, 2014. My New Life birthday!

(These were posted on FB)   Today is really the apex of this whole journey: the reinfusion of my own cleansed stem cells.  It is considered my new birthday of my New Life.  I know it probably sounds a little Girl Scouts' rituals or something to everyone else, but this is quality of life, folks.  This is the real deal.  I was told it would occur about 12:00, but like most events that we dread/anticipate, it took a little longer.  There was, of course, much cleaning of the room and laying of sterile cloths.  Dr. F then enters with my stem cells frozen in liquid nitrogen and begins to thaw them in a common red bucket of water.  The nurse stands by and suctions the stem cells into syringes and then Dr F sits by my side and attaches the syringe to a thin tube already inserted into my carotid. He then infuses the stem cells.  No pain, no problem.
    Now tell me why are people having to come from America, New Zealand, Australia, Norway, India, etc to have this done?  Check out the data on pharmaceutical companies and how much they spend on marketing rather than research.  Not to mention the kickbacks neurologists get for prescribing the MS drugs.  Pharmaceuticals spend more than double on marketing drugs than they do research.  What's more, every drug they have come out with operates on the exact principle.  No new approaches; they are all 33% effective.  Really makes you want to sign up for a $40-50 drug, doesn't it.
   We just got word today that Dr F will have to reduce the number of autoimmune patients having this procedure to treat more cancer patients. This man is an angel of God and yearns to help every patient,but there is only one of him and only one building.  I feel it was God's hand that got me placed here before the overcrowding began.  Everything has gone so smoothly and I believe that God must haveplan for good to come of this!
   Good night, friends.

These are pictures of the celebratory tossing of the liquid nitrogen out onto the floor!  ((Video is posted on FB)

Moscow Journey, Day 17 -July 8, 2014

   Today was an easy day since I only had about a liter of something infused in me to wash out the last of the chemo.  The rest of the day was spent inside, with John, of course,  Oh, I did take a little tumble as soon as I got out bed but wasn't injured.  I think it scared the two nurses worse than I.  I was just embarrassed.  John doesn't understand, nor do I, why it embarrasses me to fall.  Gut level reaction, I guess.
    We have made some wonderful friends here that I feel will be friends for life.  Brendan, a Montana fly-fishing instructor is running for mayor of the second floor, so says his father, Bob.  Bob has been a Fulbright Instructor in Russia 21 different times and also in  many other countries.  This is such a group of eclectic, intelligent individuals that I might have accidentally fallen in the wrong group.
    TOMORROW is the big day!  They will reinfuse my cleansed stem cells and they enter my bone marrow and began engraftment, rid of MS cells.  Please pray for God's miracle.  I feel he has led me here and has good things in store for me.  Hope I feel like posting tomorrow night.

Moscow Journey- Thursday, July 3

I realized that I had left this day out, and as a teacher that really bothers me!  I will attempt to retrace my steps and recall what happened that day.  I know that I had all my testing done and was anxious to proceed with the next step.  There are four days scheduled for testing and we completed all but one in one day, so there I sat in idle.  I asked Anastasia what the hold up was, she talked to Dr F and he said we start mobilization tomorrow!  I think Dr F tries to keep 3or4 patients on the same schedule.  We all feel Dr Fedorenko is an angel of mercy.  He is offering hope to us that is not available in our countries.  He is always smiling, takes time with each patient every day, and you can see how fulfilled he is by his mission, and this man is only 37.

Moscow Journey, July 7

What?  You say we already had July 7 yesterday.  Between chemo fog, black holes in my brain from MS ( I'm really baring my soul), and non communication with the language, I'm a little mixed up.  I've always had trouble with numbers, but this is ridiculous!  Time is flying by so fast that I'm over halfway through.  Today was a good day.  I woke at 5:00, did a little FB, read a little, washed out some clothes, ate breakfast, and then got hooked up to my last chemo for 3.5  hours, then another transfusion at 5 and another at 9.  My little bladder is not equipped for that much volume.

John and I did take another walk and enjoyed the 72 degree temp.  The grounds are so beautiful here. I can't figure out how to post photos on my blog, so you'll have to see them on FB.  One of my new sweet friends can get out and shop a little and she brought me a fresh nectarine.  FRESH FRUIT!  It's amazing what I miss.

I enjoy eating, way more than I should, so this the first time in my life that I dread the sound of the food cart approaching.  I might have already said this but we are fed at 8:30, 11:30, 2:30, and dinner at 5:30.  This is not typical meal schedule, just us.  There is no way I can eat half of it and then I have to drink two protein drinks!

I guess you all saw my bald head!  It is something to be proud of here because it means new life.  John said I have a nice shaped head.  I said" good" because there's no way I can alter it.  The man is digging deep to say something sweet!  Promise I'll get my dates straight from now on.  Good night.

Moscow Journey, Day 16 -July 7, 2014

Yet another uneventful chemo day.   There was some variation because I made myself get dressed, put on my make-up, and take a walk outside.  It began drizzling just as we emerged from the building, but we just settled under an overhang to enjoy the brisk air.  I am a people-watcher, and people here walk a lot (explains obesity in America?) so I observe people and imagine what is going in their heads.  John says his Mama did that also.  Maybe it's a female thing.  John is probably speculating on how they constructed a particular part of the building or the shocks on a certain car.

I said yet another chemo day.  I should have said "FINAL CHEMO DAY".  This whole process is going by so quickly it seems surreal.  Also, the total lack of pain or vomiting or all those other chemo things is amazing!  This has been a breeze, no problem.  So tomorrow I have a day of rest and flushing my body of the residual chemo (fresh start, remember)!  Then my stem cells, all cleaned of MS, will be reinfused.  That means July 9 will be my new birthday of a New Life and hopefully a dramatically different life.  We will have a little ceremony where all those not in isolation gather in the lobby to celebrate.  I, if I'm able, or another patient throws the liquid nitrogen out of the canister.  This is where my stem cells have been stored, so I guess figuratively we are throwing away all those yucky MS poisons.

And now for more about my interesting new friends from various places around the world.  Yesterday I made another friend from Australia.  John had already bonded with her husband over breakfast through their common interest in cars.  Wayne has a collection of what John calls " desirable" cars, and they eagerly shared pictures.  John was actually late getting to the hospital.  Can you imagine that!  He found an antique car collection more interesting than his wife of 43 years?  Two more patients came in yesterday so I have more people to meet.

Moscow Journey-Day Nineteen, July 5

Well, the REAL show got started today!  What makes HSCT effective is the wiping out of the faulty immune system and the "reinstalling" of the new improved stem cells, cleansed of the T cells causing the MS.  When people speak in awe of having a stem cell transplant, it makes for no improvement if the faulty immune system isn't knocked out.  That is the reason for the chemo.  I am also receiving anti-viral, anti-fungal, and anti-bacterial meds and something to protect my urethra from damage.  Dr. F has it covered.  I will lie here much of the day receiving chemo, and tomorrow, and tomorrow, and tomorrow: four days of chemo.  I don't let myself get impatient as it is all a means to an end:  Hopefully, an end to MS progression.
    Never have I understood the meaning of urinary urgency until now.  I lie on the bed and have eight pints of liquid, including chemo, pumped rapidly into my body.  Need I say more?  Thank God for a loving patient husband to be of assistance.  After 43 years of marriage, I really know what love is.  I know I would willingly do all this for John if he needed it, but it truly is an expression of love.  A weaker man would have  run, and many have done so.  I so appreciate That God gave me this wonderful husband.

Moscow Journey, Day Twelve, July 4

Since my body refused to produce two million stem cells on the first day, we'll have another go at it, another five hours lying still.  I am playing all the mind games I can create to picture those stemmies vigorously detaching from the bone marrow and vying for position to get into the bloodstream.   I understand about 50% of people take two extractions to get the full amount.  I just wanted to be an overachiever and get mine the first try.  I do believe the step of returning my blood to my body was omitted as I am weak and wobbly.  Since John was sightseeing with Rosemary, I spent much of the day in bed reading.  Good news at the end of the day!!  We have the two million stem cells!   Now for a quick medical procedure of removing the 10-12 inch tube from the jugular and later inserting 3 needles for chemo tomorrow.  Moving ahead!
   Two of my FB MS friends celebrated their new birthdays today.  That is what it is called when you receive your stem cells back and, hopefully, start a new life.  Blessings on you Nancy and Sheila.

Moscow Journey, Day Ten, Wednesday, July 2

Today was just another step forward, stem cell extraction.  They have put a tube, about 12 to 15 inches long, down inside the jugular vein.  It wasn't painful, just slightly uncomfortable.  They hooked me up to a machine made in Massachusetts, imagine that!, to extract the blood, separate it with a centrifuge into red blood cells, plasma, and stem cells.  Other than having to lie for five hours and not tee-tee, oops!, it was not eventful.
  John, Nancy, and I walked outside for some fresh air and were met by Hatice, cute younger woman who had also had just had (stem cell extraction).  Hatice faints easily and became weak.  Fortunately, Dr F came along, called Anastasia to bring a wheelchair for her.  I, jealous of the attention, began to feel weak and had to be pushed on my rollator.

Moscow Journey-Day Nine, Tuesday, July 1

So my day began with coffee, a slice of cheese toast, and some porridge.  Next I get connected to the stem cell collection machine for five hours.  I was told to wear pampers, but there is just something about knowing you can't urinate that makes one want to pee!  My students would say TMI-too much information.  There is absolutely no sensation otherwise.  Everything is a means to an end, hopefully, a really good end!  I am still so confident and trusting in this team.  They know what they are doing and have addressed every single detail.  Dr F and Anastasia drop by every day and explain what's happening next.  They always want to know if we have questions.  Dr F often leans over and clasps my hand very comfortably.  They stop by at night before they leave.   Such personal and caring service.
   Well, Dr F stoped by to tell me they got 1.3 million stem cells and I need 2 million, so another day of apheresis tomorrow.  It's really quite boring as I must lie perfectly still for five hours.  Not fun!  Hatice came to see me to tell me I won.  She only got 1.1 million.  She says the men always get more and she is coming back as a man next time.  She is so cute, 33 years old but the personality of a 17 year old.  She says John and I must come to see her family in Australia for a month.  I'm game for It! Oh well, here comes another meal.  I've never been hungry since I arrived here.  There is food every three hours and then two protein drinks a day.  John will have to roll me off the airplane, into the car, and into the house,  Maybe I'll be able to walk some of it off!

Moscow Journey-Day Eight, June 30

Well, another step forward today.  Since this is day four of neupogen shots and steroids to promote stem cells moving from the bone marrow to the blood stream, it's time for the port to be installed in my neck.  This one of two things I've been dreading.  Well, it wasn't bad at all.  The nurses get me situated lying on my back  on the table, and I see Dr F about a yard away in the next room.  I say, " Dr.F, don't forget I want pain meds."  He says, "They know."  The nurse Gaulina shoots me in the booty, and the other nurse (doctor.) proceeds to swab my neck.  Dr. F says topical analgesic.  Thank God Dr F speaks English.  I attempted to get Dr F to hold my hand throughout the procedure, but he said, "the doc doesn't want me there in her sterile environment."
The doc proceeds to make a slight cut in my neck and thread a rather large, long tube down my jugular.  There was a slight pinch and pressure as she pushes the tube down the vein, but it really was not unpleasant.  So now I hope we get better TV reception as I have three six inch antennae sticking up out of my neck.
   My attitude at this point is that it's all a means to an end.  If this what it takes to enable me to have my life back, bring it on!!

Moscow Journey-Day Seven, Sunday, June 29

Well, one month from today we'll be flying home, me bald and probably a little fluffier from all the steroids, four meals a day, two protein drinks, and no exercise.  Not a pretty picture, is it?  But, hey, I might possibly be walking for the rest of my life rather than wheelchair or bedridden.  Now which choice would you make?  And if I can walk, I can walk off some of the extra fluff.  Oh, how I dream of that!

Today, Dr F and Anastasia organized a part/tea called New Life Anniversary.  There were former and present HSCT patients in attendance, and Anastasia had put together a video presentation of former patients of Dr F.  It was very encouraging to see such improvement and gratitude for a new life.  I hope to be one of those walking (dancing?) patients who comes back to bring hope to others.

Had a good nights sleep last night by taking a sleeping pill after the 11:00pm shot and then a Valium after the 3:00 shot.  I slept until 7:30 and then dozed off twice today.  Right now, at 8:50 with it full daylight outside I am sleepy.  I know my sleep patterns are of immense importance to all of you five readers who are following this blog.

Oh, tomorrow is port day.  A large needle with a 8 or 10 inch tube will be inserted into my jugular vein.  Step up the prayers please.

Make some comments.  Let me know you are out there.

Moscow Journey-Day Six, June 28

Day two of steroids infusion and neupogen shots.  I'm still on a steroid high and want to visit everyone and talk endlessly, which you all know is so out of character for me-;). I am enjoying getting to know Hatice, the 34 year old girl(so she seems to me) of Turkish descent who lives in Australia.  Her older brother learned of this procedure, did all the research, presented it to her, and then accompanied her and her husband here for Hatice to have it done.  At first, she was very shy, but she's so very sweet and loves company.  Whenever one visits her room, she hops up and starts preparing refreshments and tea.  I guess it's her country's custom.  I told her when they come to my room, all they get is my charming personality.  Her other brother and sister in law flew in today, and Tom, the first brother, went home.  I'm sorry I didn't get to give him a proper good-bye.
   All the nurses and other patients are so pleasant.  It'll be as if we have a new international family.  I only have two more days of steroids and neupogen shots, and they will put the port in my jugular on Monday.  That's one of the two things I don't anticipate, but Dr F assures they will be very gentle with me.  We'll see if his interpretation of "gentle" is the same as mine.  Please pray that it is not painful or traumatic for me.

Moscow Journey Day two, June 24, 2014

What a day!  I've never been through so many medical tests:  breathing capacity, heart function, vein ____, sinus and lung X-rays, MRI of brain and spine, swabbing of private orifices (you don't want details), blood tests, abdominal and vaginal ultrasound, and one more I can't remember.  I took a two hour nap when we returned to my room and missed consulting with Dr, F about test results.  Was that fast or what?
  Interesting detail:  there are armed guards at the gate to the hospital and patients' caregivers, I.e. John, must have a special pass to enter and exit.  There are also guards at the motel and one must show room key to enter the elevator. I certainly feel safe!   Everyone on the staff here at hospital is so nice, even if we can't really have a conversation.  Dr. Fedorenko and Anastasia, his assistant, are fluent in English, but they are the only ones.

Moscow journey: Day Four Thursday, June 26, 2014

 We are coasting today.  We've had a lazy day just lolly-gagging around and reading and visiting my HSCT family.  There are such a nice group of people here from Indiana, Maryland, Texas, Australia, England, and New Zealand.  We hear disdain for neurologists from everywhere. Neuros are drug-dealers-;  I inquired of Anastasia why I'm not moving forward in my treatment, and then I saw her speak to Dr. F.  He came to me to say we'd start treatment tomorrow.  I will have steroid and neupogen injections(sp) to reduce inflammation and promote stem cells moving from bone marrow or blood to be harvested for later reinfusion.  I'm ready to get this show on the road

Moscow journey: Day Three Wednesday, June 25, 2014

 I had one more test this morning.  Now I'm done with testing!  We did get to meet with Dr. Fedorenko.  He explained all tests and gave me encouraging news.  I'm normal!  Who would've thought I'd come to Russia to be told that!  The good/bad news is that I have four active lesions.  Good news because there is more likelihood of improvement, not just halting of MS.  Bad because it has caused deterioration during the past six months, but that can hopefully be reversed.    I'm feeling God's hand in this more and more.

Moscow journey-Day One, Monday, June 23

After 12 hours of flying and two layovers, we arrived safely in Moscow Monday, June 23, to be picked up at the airport and transported to the A.A. Maximov Hematological and Stem Cell Institute by 1:45.  Dr. F left his apologies for not being at the hospital today, but we were met by the beautiful Anastasia.  John found the husband, let me rephrase that; Judi found the husband of a friend I've made on FB and talked on the phone with who went on the trolley with John to the motel.  John was so exhausted I was concerned about him.  Wait!! This is supposed to be about me!

HOPE

"Hope" is the thing with feathers - (314)

By Emily Dickinson 1830–1886 Emily Dickinson
 

“Hope” is the thing with feathers -

That perches in the soul -

And sings the tune without the words -

And never stops - at all -........

         Hope if such a small word with such large implications.  If one is diagnosed with a chronic, degenerative, crippling disease with no cure, no medicine, or positive outcome, HOPE becomes a very large word. Losing hope equates with depression which I've dealt with in the past four years.  I was always an optimist and had a positive outlook, but when MS returned (I was in remission for 19 years) to alter my capabilities and deprive me of a future doing all the things I love to do, I've found it difficult to maintain a positive attitude.  In my retirement (which I had to take a couple of years earlier than planned because of MS symptoms that interfered with teaching) I envisioned traveling-which is difficult to do when one cannot walk unaided more than 25 feet, dancing-which is now impossible since my feet won't obey commands, and taking our grandchildren on trips-which is not feasible since I am not mobile enough to walk around with them and my husband, but MS has robbed me of those dreams.  Although I can still drive, I barely go to a store by myself anymore because of the inconvenience of getting the rollator in and out of the car and the fatigue I experience after a short distance of walking.

         When I learned of Hematopoietic Stem Cell Transplantation for the treatment of MS, I regained HOPE,  For me, it might not restore all the lost capabilities mentioned above, but at least I have " hope".  About 20-30% of patients who go through HSCT do not experience halting of the disease; therefore, I am grateful to have many friends praying for me that this treatment will halt the progression of MS for me.

          To have HOPE again is huge.  I go into this treatment, knowing that it is a difficult procedure, and I will not regain my health status that I now enjoy for many months, and I won't truly know what positive outcomes I might achieve for 12-18 months.  I'm willing to endure this because it is the only HOPE that I have been offered.  HSCT is the only treatment that is offered with a proven positive outcome for MS (and other autoimmune) patients, and I, therefore, am eager to undertake this medical adventure.