Sunday, May 18, 2014

Testing Update

"I saw my reflection in the window and didn't know my own face, gonna leave me wasting away on the streets of Philadelphia...night is falling and I'm lying awake, I can feel myself fading away, on the streets of Philadelphia."  Bruce Springstein.

I was struck by the poignancy of these words recently when I saw myself in the mirror.  The physical appearance looking back was just a paltry shadow of what my body used to be.  I look like a skeleton with clothes draped over it.  Its almost like I am outside my physical body most of the time, just observing this body and what is happening to it by this disease.  My continuing struggle is not to identify who I am by this body that harbors my true self.

Since my last post I have started re-taking Diflunisal in hopes of slowing this progressive condition.  I've been on it about 3 months now with no apparent negative side effects.  I look for and remain open to the healing possibilities that may come.  Am I improved as a result of the drug?  Am I any better?  Perhaps.  That I can even say "perhaps" is a modest victory.  I feel I may be a little more alert, and my energy seems better.  My GI problems are slightly better, but that may be due to me managing my diet and food intake better.  I haven't noticed anything with the neuropathy.  Those symptoms have continued to decline.  I walk with the assistance of newly purchased forearm crutches most of the time now.  Those steady me a lot more than my cane does, but seem to scream "I'm disabled" when I use them, but it is what it is.

My son's don't say too much to me about my condition, but it must be hard for them to see me deteriorating before their eyes.  They are amazing young men, and I couldn't love or be more proud of who they are and are becoming.   They both just amaze me sometimes.   My oldest son Sam recently made a rare inquiry about my condition as I was laboring to pedal my stationary bike:  "To be honest Sam, my balance is getting worse and despite my efforts, I keep getting weaker."  Later that evening I received a text from him:   "Dad, I've been thinking about what you said tonight.  Just want you to know, you're the strongest, most balanced person I know."   And from my son Jake, who was away at college at the time, writing  me about how he has observed my battle with disease:  "Just please know dad that I do think of you every day and you still influence my decisions.  You're my superman dad."

I bring this up now and share these comments because both have been weighing heavily on my heart. I think I mentioned in my last post that because of the Diflunisal results I wanted them to get tested.  Both got tested; both have the gene.  My brother Ron also has the gene; my brother Dave (the one with no kids!) is in the clear.  Not exactly the legacy I wanted or hoped to pass on to my kids.  Ron too has started the Diflunisal, and I believe the boys will be starting it soon.  There is no clear data on it preventing the build up of the amyloid deposits, and with our form of the disease, you don't always get the symptoms even if you have the gene.  But at least it gives them something to fight with,  and be proactive.  Hopefully it will never be something they confront in their lifetimes.

Sam and Jake are so much wiser and more capable than I was at their age.  Both seem to have taken this in stride and let it go.  I sense in both of them an ability to set this possibility aside and just move on with their lives.  I think it has reinforced in both of them a sense of living for today and take advantage of opportunities given them.   Jeanine, the boys and I will be convening in Kauai for a well-deserved and overdue vacation starting tomorrow.  Although I'll be limited in the activities I can participate in, I look forward to the time we will all have together, and to introduce them to my favorite island.

I'l be retuning to Mayo for my five year transplant anniversary in July.  There is a good chance that Jake will be going with me this time.  I'd like for him to see Mayo Rochester as well as the Gift of Life House:  places that had such an impact in my life.  Until next post.....Rick

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