On Feb. 13, my Hematologist said to me, "All your blood counts are in the low end of normal range and they are trending up.  You are out of the risk zone.  See you in 3 months; at that time we will also check to see if any of your vaccinations were affected by the treatment.".  Good stuff.  But I still don't want to get sick, because it really set me back last time, so I will be careful.

I bought a walker recently.  I was hesitant to buy it, since my initial (and typically stubborn) thought was that it would be a step backwards (moving from a cane to a walker).  But it is really very helpful. I barely rely on it (my grip is very loose), but it gives me confidence when I walk, knowing that if I lose my balance it will keep me upright.  This allows me to concentrate on walking using good form (accentuate lifting my feet, take slow and sure steps), without having to think about anything else, which increases my desire to walk more often.  Which is what I need to do.  Walk more often, and walk properly.  It is definitely a very beneficial piece of equipment for me. It's made of aluminum, the front two legs have wheels, and the back two legs have knobs on the end of them like a cane.  It looks something like this:

I am stretching more these days.  My hamstrings were actually a bit sore after the first day I stretched with purpose.  They are extremely tight, especially the right one.  Years of muscle spasticity without any stretching and minimal exercise has made them tight like ropes, and very likely shortened them as well.  I've also started to take magnesium (in powder form) daily, since I have read that it helps to relax muscles.

This week I am increasing my physiotherapy session frequency from 2 to 3 times per week.  And 95% of my sickness is gone.  I am feeling decent, so I will take advantage of it and do more exercise.

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February 15 was our youngest daughter Aly's 3rd birthday.  How time flies.

Not feeling very good physically these days which affects my mental well being (constantly thinking to myself: was HSCT worth it? is that all - two months feeling great, and now back to where I was?).  Legs are stiff, weak, and 'loud'.  Feeling tired.   I believe this is no more than the post-HSCT roller coaster I've read about, amplified by the sickness I got (a cold).   But that doesn't make it any easier to endure.  My advice to everybody post-HSCT: try to avoid getting sick.  It wasn't a severe sickness, since I was able to recover without having to go to the hospital - but it still made me feel very shitty, and I lost some strength gains and 2 weeks of exercising.   My physical therapist said that some of my strength is still there, but I sure did (and still do) feel rotten.  My legs are prone to "locking out"(when I walk) a lot these days, so the first order of business for me is to get them stronger to reduce, and possibly eliminate, the frequency of them locking-out.  That will improve my mobility, and walking confidence.

 I've been told that the first six months post-HSCT are the most difficult, and that any sustained improvement will likely not (if at all) take place until 18-24 months after HSCT.  I believed (and acted / expected as much) that if I just rested and ate, HSCT would quickly fix me like magic.  I finally accepted - after some good conversations with a few people close to me and with myself - that this is not true.  For me, HSCT was the easy part - I rested and let the drugs do the work.  Now, I have to do the work.  And there is lots to be done.  And, the science says that HSCT stops you from getting worse, and any healing is a bonus.  I need to reel in my expectations a little, keep thinking positively, and be patient.  And be patient.  And be patient.

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Exercise

Feb 6: treadmill walk 10 min; elliptical machine 10 mins
Feb 7: treadmill walk 10 min; elliptical machine 10 mins
Feb 8: treadmill walk 20 min

Feb 9:
(1) marching 3 x 10 each leg (hold for 2 sec. at top)          
(2) stepback lunge 3 x 20 (10 per leg)
(3) calve raises on stairs 3 x 10
(4) toe raises on stairs 3 x 10

Feb 10:
Morning
Physical therapy.  My legs were shaking & quivering like it was my first physio session
Afternoon
(1) calve & hamstring stretching
(2) toe raises on stairs - 4 x 10
(3) pedal machine 10 minutes

Feb 11 (3 months since Day 0):
Walked 1/2 mile on treadmill (1/4 in the morning, 1/4 in the afternoon - took 13 minutes each 1/4 mile at speed setting of 1.2)

Feb 12:
Physio

Tomorrow have an appointment with my Hematologist.  I am interested to find out what, if any, affect my cold had in the immune system indicators in my blood.

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My life has been a series of very fortunate events and lucky bounces.  I have a great wife, great children, great friends, and a good job, which together provide a solid foundation for a great (and steady) life.  When bad or unlucky bounces happen what I usually do is shrug them off and just say to myself "I guess it wasn't meant to be", or "Don't worry about it, it will all work out in the end (even Steven!)" or "It will turn up somewhere, don't sweat it".   And every time, things just seem to work out okay.  I've never really had to work hard for anything, I have just kind of 'fallen' into good things.  This HSCT for MS thing is entirely different.  Yes, I am very lucky to have been able to have HSCT, but now the proverbial ball is in my court, and I can't do what I usually do and just let the chips fall where they may.  I have to do something about it (i.e. put in the necessary work), or all the time and money invested in HSCT will have been wasted.  This is new for me, and is providing a significant challenge mentally.  But at least I have finally realized it.

Somebody in the HSCT for MS and other Autoimmune Diseases Facebook group that I am a member of made this picture to describe the HSCT treatment and recovery process timeline.  As the saying goes, a picture is worth a thousand words:

I was sick with a cold the last couple of weeks (Jan 22 - Feb 5), so I did not exercise at all.  I definitely was on a low elevation on the HSCT Treatment & Recovery roller coaster ride.  My legs hadn't felt that shitty since before I left for Israel.  But I am lucky, and thankful, because I had a place to go (Dad's) with round-the-clock care on demand.  And I am thankful that Anne's parents were able to come to our place for 2 weeks and help out.  And I am thankful it was likely only a 'minor virus' (said my Doctor when he checked me out).  And I am thankful I didn't require hospitalization (fever was close to, but never reached 38.0C).  And I feel better now.  Not entirely rid of the cold, but close.  It ain't gonna be peaches 'n cream all the time (thanks Damian Lillard), but I am very glad this sickness is behind me.  Back to exercising.  And stretching.  And home.