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.