Moscow Journey May 9, 2016

     Today makes 22 months since my stem cell infusion, and I continue to see improvements.  I use the cane exclusively when ourside the home (sometimes using an electric cart in the grocery store) and actually danced in public on Saturday night!!  For those of you who really know me, you know dancing is the top of the mountain for me.  We went to a friend's mother's 80th birthday party.  We had worked with our friend and her husband  on their dancing (they used to take dance lessons from us), and we joined them on the floor.  I didn't look anything like I used to look, but my feet moved to the rhythm of the music!  It was wonderful.
     I have been following the Dr. Phil diet and have lost 8.5 lbs and feel fantastic!  On Saturday, I told John I feel like I did before MS came back to live with me in 2010.  My mood is euphoric, too.  I drove to Tallahassee by myself on Friday and actually shopped three stores.  Of course, Melanie (my sister) was with me for two of the stores, but it is still an accomplishment. Oh, I forgot to say that I can walk 10-15 feet without using my cane, something I never thought I'd be able to do again. I am still so grateful to Dr. Fedorenko for giving me a chance to regain my life.
     The only physical hold-back for me in the last six months has been my hip flexors being so restricted.  In the past two weeks, I have finally been able to stand up straight and not look as if I'm 90 years old.  I have to quit saying that as my sister-in-law's mother is 92 and more spry and feisty than I.  We should all be so blessed.
    Just felt as if I needed to record my progress for me and for my friends who care to keep up with me.  Thanks to all of you who care:-)

Moscow Journey-Day five, Friday, June 27

    Today we get the show on the road!  11:00 am steroid infusion.  Steroids do two things to me:  Rev me up and make me talkative.  Now there are those of you who think I'm loquacious normally; turn that up by 100 when I'm on steroids.  Scary, isn't it?  John and I usually take a stroll down the hall visiting with our new HSCT friends.  John has learned to let me sit on the seat of the rollator so he has control of when we leave each room.  He just proceeds to start rolling me out as I'm mid-sentence which is truly kind to our new friends.  The nurse comes at 11pm and 3am to give the neupogen shot to stimulate those little stem cells to start leaving the bone marrow and gravitate to the blood stream.  This procedure lasts four days, and then they install a port in my jugular vein to extract the stems through.  I will, hopefully, have produced two million per kilogram of weight.  There's yet another reason to hate being overweight!  I have to produce more stem cells.  Oh, the first three days I lost three pounds.  I thought, hey, this might be the most expensive weight loss program yet!  Of course, this has not continued.  They serve four meals a day: 8:30 breakfast of cream of wheat? Or rice?  Two pieces of bread and baby yogurt.  11:00: Second breakfast or mid-morning snack of 2-4 baked apples, boiled egg, and slice of roast. 2:30: Lunch of large serving of mashed potatoes (real ones), 2 slices of bread, yogurt, mystery meat unless there is cow tongue or no meat.  Sometimes they serve a small can of what appears to be baby food meat as it has a picture of a baby on it.  One patient wittily called it boiled baby head!  Wait, I'm not finished!  5:30 Dinner (or supper if you're from the southern USA) consisting of some sort of high fiber soup, more bread, sometimes mystery meat but not tonight.  Tonight we had some sort of dessert that looks like cheese cake or bread pudding, firm consistency, slightly, with raisins baked into bottom.  Quite good.  I suspect they might eat more healthfully than us Americans, except for the massive amount of bread.  It is fresh baked- no preservatives, but it is not my favorite.  Oh, they leave your dishes in your room, and you are expected to wash them yourself!

That's enough for today.  It is 11:30 and the sun has just gone down,  It will be light about 4 am.  A sleep mask is imperative.  

Moscow Journey, August 2, 2014

So, am I allowed to skip so many days?  oh, that's right!  It is my blog!

  We arrived home about midnight on July 29, and it felt so good to climb into OUR bed.  Our trip home couldn't have been better.  Dr. F certainly knows how to care for his patients.  His driver, Vladimir, took us to the airport, set me up with the wheelchair transportor who then helped us get our boarding passes, escorted us to a special lounge, and then escorted us to our seats on the plane.  We were fed three meals between 2:30 pm and midnight. I am afraid to weigh!  We were well taken care of.  We were also served breakfast before landing in ATL.  We had a very brief layover and very courteous assistance before boarding the flight to Tallahassee. We were fortunate enough to have wonderful neighbors, Bobby and Sue Jackson, and friends, Jim and Lesa Cannon, who met us as we came down the ramp.  What a blessing!  Bobby and Sue got us home quickly, for which we were very grateful.  We piled into bed and I am not even sure how long we slept.  Since we arrived home five days ago, I have slept more than I can remember.  I can barely stay awake more than four hours, but John reminds me I've never been through chemo and stem cell transplant so I just need to give in to it. Never have I been so willing to take someone's advice to be lazy!

I am still so grateful to have had the opportunity to take advantage of this treatment.   I still don't know what God has planned for me, but I will listen to him and hope that He will use me in some way to help others

Moscow Journey, August 18, 2014

     There seems to be little news in my life.  I am not going out in public much yet because of my fear of coming in contact with anything causing infections.  I've only held my eight month old grandson once in the three weeks I've been home because he has a cold he can't get rid of.  I haven't seen our two Mississippi grandchildren yet.  It's so hard to know how cautious to be, but one former HSCTer said one can end up in the hospital with what seems to be a fairly mild infection.  I've spent enough of 2014 in the hospital!

     I have had pain that I attributed to inactivity and thought was muscle pain.  Then I read about bone pain following HSCT. I am still in conflict about starting physical therapy and general exercise.  I started doing stretching and I do feel the benefits.  At least I am a little more flexible.  This is an ongoing process, and one on which NO one nearby can give authoritative advice!

Moscow Journey-March 20, 2015

    Well, the saga continues.  Since posting last, I had my yearly physical and my doc noted that my WBC and platelets have declined since my last blood work.  He said he'd like for me to see a hematologist if the counts continue to decline.  I said, and doc concurred, that I'd like to go ahead and pursue that idea.  So the next week consisted of a visit to the hematologist, blood work in which 18 vials of blood were drawn, a visit to the pain specialist (again) in order to get a refill on my Baclofen, scheduling of a bone marrow biopsy, and scheduling of two MRIs.  Embedded in all of that I had two physical therapy visits which went well.  The hematologist said the blood work is to determine if I have any vitamin deficiencies, any viral infections, or autoimmune diseases.  She called me the next day to say a slight deficiency in B12 and folic acid levels was found. It is my prayer that nothing else will be found.  It is not uncommon for people who've had HSCT to develop a second autoimmune disease, so I'm praying that won't be found.

Moscow Journey June 17, 2015

    It has been almost 2 months since I wrote in the journal and much has happened. After running all the tests, the hematologist did not find anything except my platelet count is still low. We will monitor it and make sure that it maintains the level at which it now stands. I saw a pain specialist and in searching for ways to help me sleep more than four hours at night he had me try OxyContin which did not allow me to sleep at all  for several nights. I am now going to sleep with one Oxycodone and 25 mg of Benedril which allows me to sleep for four hours before being awakened with pain again. I then take another oxycodone which gives me another 3 to 3 1/2 hours of sleep. I am grateful to have something that will allow me to get adequate sleep. It is amazing how important sleep becomes when you cannot sleep. 

            As the date of June 23 nears, the date I left for Russia last year, I stop to assess where I am in my MS journey.  I have definitely lost ground in comparison to my mobility status before I left for Russia, but I am getting better weekly and hope to be back to my original health shortly and begin gaining ground-improving-soon.  I have ceased working with the physical therapist and have begun working with my personal trainer at the gym.  She and I have seen some improvements in my mobility in the last 6 to 8 weeks that I've worked with her.  I have recently begun driving which gives me a certain amount of independence. I have mastered taking  my rollator out of the car but need help putting into the car.  That gives me the independence to drive to the gym as long as I have someone help me put the rollator into the car.   I am now sorting, washing, drying, and folding clothes, and I usually cook at least one meal a day. Strange that I am grateful to resume housekeeping duties.

Moscow Journey Oct. 3, 2014

In  In another month, or less, I hope to report positive changes.

          I can't believe I've been home one month plus three days. My progress in terms of walking, which is my goal, has been delayed significantly because of bursitis in my hip due to a fall.  I should probably read my precious posts since I might be writing the exact same thing!  I have had a cortisone shot in my hip-all to no avail, taken five days of steroids, and have begun physical therapy.  The shot only helped for about twelve hours.  The oral steroids have helped, and I hope the benefit remains as I complete the prescription.

       I really like the physical therapist.  She pushes me just a little but not too much.  I've only seen her twice, and the first time I saw her I told her my goal is to walk comfortably with the cane again, not to compete in dance competitions!  I was surprised when she suggested that I bring my cane for the second visit.  Well, I did walk with the cane on the second visit although I was leaning on John's arm the whole time.

    I am optimistic about the eventual outcome of HSCT  and physical therapy.  Right now I am still recuperating from the whole procedure and am walking kind of wonky due to left hip pain.  As I get out of pain, I hope to regain my normal walk, even with a cane.  My stamina is not great, so that is something I need to work on.