HEALING - DAY 3 - 020507

There have been so many instances and sub-plots that I haven't written about... I will try to fill in as we move forward.
Healing requires that we keep looking forward.
When I remember the connection to a previous instance, I'll flashback.

Being back in Westborough is a jumble of emotions: When we drove into town on Friday, I felt like George Baily, in "It's A Wonderful Life"; I wanted to roll down the window and scream "I LOVE YOU, MACDONALDS & FRIENDLYS", "HELLO YOU CRAZY WESTBOROUGH SAVINGS", "I'LL SEE YOU SOON, CVS!"
Robbi and I laughed at these cliché rants because we truly felt the sentimentality. We are home. That said, the conflicting sense was that we are in a strange place, and we are unsure of what is to happen next. Robbi drove on auto-pilot, while the surroundings weren't really familiar.
The one thing I wanted to do (but didn't) was to "DO THE ROTARY". The Rotary is the traffic circle (aka a round-a-bout), in downtown Westborough. The high school tradition is to return from a victorious football game, and the bus drivers continue around the Rotary multiple times while beeping the horns. It's an acceptable public nuisance. My variation was to hang my butt out the window while Robbi beeps the horn... an idea that was best left in my mind... which it was.

Before I discuss my physical condition, I must once again explain the difference between Treatment and Healing/Recovery - and the definition/prospects for Success:

TREATMENT: The whole period from when we arrived in ME (122606) until we left ME (020207). During this time I was prepped for and received my stem cell transplant. My Scleroderma symptoms are affected by some of this treatment, specifically, the chemo. Cytoxan is a chemo that I've received before and is known to have some affect on symptoms. Most likely is that the skin can be softened. This is neither a cure, nor a long term relief. As a matter of fact, my previous Cytoxan experience, I had none of these benefits. The stem cell transplant is part of the Treatment. IF there are any benefits to be realized, they will be seen during the Healing period - which continues for the rest of my life.

HEALING: There are 2 phases to Healing -

1) RECOVERY - from the Treatment: The beating that my body took from the chemo is severe. The risks of various cancers are greatly increased. Although they pumped me with other chemicals to minimize these risks - my chances of developing cancer is much much MUCH greater than most of you. The fact that I would take on THIS risk, might bring home the risk of death from Scleroderma. It was a no-brainer.

2) HEALING - from the Treatment: PLEASE NOTE----- Healing DOES NOT EQUAL CURE!!!
Of the approximately 36 people that have received stem cell transplants:
>>> 5 DIED FROM SCLERODERMA PROGRESSION, WITHIN 2 YEARS OF TREATMENT. Depending on the degree of their disease, they were likely to die within that period of time, even if they didn't have the treatment - same as my prognosis.
DO YOU GET IT?
There is a 14% chance that this treatment will have ZERO affect on my life expectancy of 2 -3 years.
>>> 31 have had some stabilization or regression of symptoms. Stabilization = neither worsening nor improvement... this may be considered an extension of their lives. Stabilization is looked at as a Success. Of course regression of symptoms is the most desired result. Measuring regression is difficult. Some symptoms may fluctuate in their degree, naturally. (Some people have had skin softening WITHOUT ANY TREATMENT!) Symptoms often increase/decrease as the disease progresses. Some symptoms are masked by the medications we take.

3) SUCCESS: Defining Success is an individual, subjective measurement. For me, the measures include the impact this whole process has had on my health, family, community, and what (if any) affects may be realized by others, as a result of my experience. Each of these factor groups weighs equally in the final measure.
I DECLARE THIS PROCESS TO BE SUCCESSFUL!

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Now, you'll have to keep coming back to read the details, to find out WHY, (although many of you have some idea, I'm sure).
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Before I sign off:
Some GAME BALLS & Thanks

Alisa & Karen - YUMMY!!!!!!!!!!!!
Lew & Family (a call and a card)
Cindy P. (prescription filled - brownies)
Nancy & Scott - ("neither rain or snow, nor gloom of night...")
Gordon & Karen (mental health is the foundation for physical health - and you are providers of both)
Sammy (a purr is as good as a hug)
Emily Sam (your wisdom grounds me)
Jayme - (talking... keep me talking...)
Steve - (a last second call... the vac is great!)
Steve - (my office is prepped & up and running!)
Skip - (my business continues to thrive!)
Donna & Rick - (We love the Pats - because of HOW THEY WIN, not whether they win or not!)
Josef & Anne - (I WILL FILL THAT Piggy Bank!)