In the middle of it – Month + 3, 22.08.2012

„Day 0“ for me was three months ago today.

For the last couple of days, I’ve been thinking about where I’m at…

 „Mitten drin!“

“right in the middle of it”

 sums it up pretty well.

The blood counts are back to “perfectly normal.”

No medications anymore – WOW – after 15 years!

Not constantly visiting a doctor – WOW – after 15 years!

Before HSCT, I was in my favorite pharmacy at least once a week. Last week I finally stopped in as a tourist because I’ve missed seeing everybody.

Next week my current EDSS (scale for measuring degree of MS-related disability) will be determined at the neurology department of the Hellersen clinic in Lüdenscheid, so that we have an objective baseline for comparing progress over the next 2-3 years.

My hair has been growing again for 2-3 weeks and I’m glad of it. The time without hair wasn’t awful (unless I looked in the mirror by accident) but it’s still nice that that phase is just about over.

Some people say I should get a hair cut…

…but I’m going to wait a bit

 

There’s a stationary bike in the living room, which I pedal on most days and I do various funny exercises around the house (sit ups, deep knee bends and on tip toes up and down stairs, etc.) and physical therapy twice a week – small portions of each but it feels good to get some exercise and I can tell it’s helping me regain strength and coordination.

The fatigue from the chemo is starting to let up and my energy is coming back.

Physically I am noticing some improvements – balance, strength, coordination.

It’s possible to walk up and down steps without holding on to the railing, good old Johnny Walker and my Nordic walking sticks stay in the back of the car almost all of the time and I’ve managed to start playing the flute (a little) again. I move more quickly and confidently. Even walked to the duck pond once (using my Nordic walking sticks), for the first time in years!

But there are good days and bad days. Sometimes it’s very frustrating that recovery is not more even, consistent and speedy. It’s emotionally hard to handle when something doesn’t go as well today as it did yesterday. I know I shouldn’t be impatient but it is hard to wait, especially with all the ideas and wishes in my head. And on top of that, on occasion, the nasty word doubt creeps into my mind. Now and then, I feel scared that maybe HSCT didn’t work for me after all and the MS isn’t stopped and might start progressing again. (That is illogical and unlikely when you look at the statistics, but fear never did have much to do with logic, did it?)

Looking back, I’d recommend that anyone who is serious about having HSCT think about and plan for the months afterwards. This period is a challenge that I wasn’t really thinking about before and wasn’t prepared for.

„In the middle of it“ really is a good description of where I’m at. My body is a long term construction site and nobody knows what the finished product is going to look like. But I do my best to feel confident, enjoy the here and now and smile when I think of the future that is coming.

Extra Info: Since I was in Tel Aviv for HSCT in May, two more clinics have begun offering HSCT for MS: one in Moscow and one in Cape Town, South Africa. And two people have been accepted for treatment in Heidelberg. Gradually, HSCT is becoming more and more accepted as the solution for MS and other auto immune diseases!