Nicholas J Graham

State of Health

I have high hopes that most of you out there are doing very well and have your health to count on.  Funny how I DIDN”T take for granted my health prior to cancer.  I actually shared my gratitude for great health through prayer and meditation quite often.  It was not uncommon for me to give thanks for being so physically active and strong.  I know the old saying it supposed to come out of my mouth, but truth be told I really have appreciated my health for a long time (especially running a bodywork practice whereby I taught yoga students and massaged people for a living and saw what poor health does to a body, and mind!  Trust me, I massaged some neglected, starving, decaying bodies! Whew! I still have some foot stink that I can’t get off of my hands because some clients had SUCH awful care of their feet! The stories I could tell . . . ).

Anywho, I am doing OK.  I am dealing with pretty intense spells of pain right now as apparently the radiation dermatitis has caused several places on my legs, arms, and back to “tear open” and create these white spots about the size of pocket change.  They are what I call “white hot” pain as anything that touches them makes me involuntarily cry out. Ouch!

One negative aspect of being in this nearly constant pain is that it makes me want to eat more and eat sweets a lot.  You can imagine what feeling bad and depressed is like, but add on top of that nearly 24/7 (yes, even during the night I wake up several times in pain) of skin pain and you feel like just ONE MORE cookie could keep the bad feelings away for just a little longer.  But we all know the ending to that story . . .

In addition to those white spots, my fingernails are continually breaking apart, chipping, and and cracking.  My right foot arch still (after over 9 months) has cracks and cuts in it that prevent me from just walking normally on it.

I will have to say one vastly improved condition are my eyes.  I put in the serum drops at least 3 times a day plus the restasis drops and where my glasses with “eye hydration cups”.  All together my dry eyes are mostly a thing of the past.  Thank goodness, because I could not even really see prior to this as I had to squint to the point of closing my eyes most of the time with the GvHD in my eyes.

My vitiligo is still present, although I believe improving all the time.  I still go to photopheresis two days every other week for about 3 hours each.  My scoleraderma is still pretty tight in linear paths on my arms and inner thighs, although it does seem to be getting softer with time.

My lips and mouth are still very tight and dry, although no where near the painful, bumpy condition they were several months ago.

I still have red bowel movements if you know what I mean from large rectal fissures going on about 6 months now.  And they said it would take a long time to heal.  Good grief!!

My legs look pretty beat up and horrible given all of the cuts, knicks, sores, etc…  They essentially do not heal from any knocks into objects and the like since the drugs I am on prevent healing.  That’s the irony; I am taking prednisone to keep me from life-threatening GvHD that at the same time prevents my new immune system from working at 100% and thus allows opportunities for infections from lack of healing and thus putting me potentially in a life-threatening situation.  Can’t win either way!!

While I still have my sense of humor, I admit I have been tired of this whole thing lately and really want to despereately move on with it already.  Come on folks, school’s out and it’s time to play now.  Oh how I wish I could just snap my fingers . . .