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Latest news on Gary's condition......11/10/2007

Hello all,

Some of you have heard some of my news, and I thought I would let you all know as I continue to be on the Maine South Alumni Association.

Finally after more than a year on oxygen, I have been able to get off of it.  They gave me the medicine which they give to kids with ADHD, and it is working just the opposite as it does for kids.  It gives me more energy, raised my blood pressure, and helped me think clearer.  That is the good news.

What started out as a PUVA (light treatment for my GVHD) burn on my cheek has become a rare form of cancer.  This cancer attacks only Transplant patients.  It is a fibrous tumor on my left cheek which is growing very rapidly.  On Friday I will go in for inpatient surgery at U of C Hospital.  They will be cutting out the tumor and my cheek.  The surgeon said he also needs to cut out a quarter inch margin around the tumor.  They are going to leave the wound open for now.  Once Pathology comes back they will try to figure a way to reconstruct my cheek. With all of my skin rejection, they will have a hard time finding skin on my body in good enough shape to graft on to my face.  For now they will be cutting many of the nerves on my face and this means I will lose control in areas like my nose, lips, and lower eye lid.

I am more scared of this than I was with the original Transplant back in 2000.  My body physically is in much less condition and healing has become quite a challenge.  I do not have a choice; I must continue to fight this terrible disease.  What I worry about most is Tammy and Grant.  While I do not have a choice in going through this, Tammy and Grant continue taking care of me while I attempt to get better.  Tammy has shown outward strength and support to me far beyond what could be expected.  She has sat with me each step of the way for the past 7+ years.  As a first grader, Grant is trying to understand and has asked some very good questions.  But it certainly is not fair to a child of this age watching his father go downhill.

 I guess I am only asking for you to think of me in your prayers (if you are so inclined) and try to understand the tremendous pressure on Tammy and Grant. 

Thank you all for your support.

 

Gary Skomasa

 

 

e-mail received Wed Feb 28, 2007

I had the eye surgery Monday and I am still wacked out, only I am permanently blind in the left eye with it sewn shut.... Whats next?????

 

 

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Previous e-mail

My Dad died on Halloween and prior to that I had going back and forth to Chicago every other week. upon the last visit to Lutheran General, it turns out that I picked up a STAPH infection with MRCA.  It is only found in hospitals, but who would think that LGH would be that dirty. I had made comments how dirty his floor was, but did not think much of till I came home.  My legs were bleeding and went back to the skin Doctor who took cultures (cut out some skin) ended up in the hospital for much of November and was switched to morphine based mega pain killers.  I do not remember anything from My dad's funeral to the new year.  Ever since coming home we started daily nursing care to treat my wounds,  but I was told today insurance for home nursing will run out at the end of February. 

 

 

I have gone through a lot of my life savings and while not broke, I am definitely in negative cash flow which is going to hard for Tammy to recover once the inevitable happens. 

 

Back to my challenge.  I have tried all the standard GVHD treatments and have gone through all the onesy, twosy treatments with no success.  They will be creating a wound clinic for me on the 14th.at the wound center in the university

hospital.  Maybe they can figure out how to stop the Massive drainage and underlying GVHD. I haven't to tell you seven years ago when I had the transplant, I thought I had it made.  I went through the transplant with little troubles.  But since then its sure has been an expedited down hill struggle.  My eyes while covered last year,  progressively deteriorate and I had surgery in December in the eye lid , unfortunately the growth in my eyelid is back and only adds to the pain levels. 

My lungs are shot.  I need 4 liters of oxygen just to breath,  I have gotten dizzy and fallen several times.   So I walk around with my walker and Oxygen tank. Then there are my teeth or lack there of.  I can hardly eat because they can not get these things to work good enough to chew anything.  BTW I am down to 189 lbs  imagine that I have lost over a third of my former self.  BOOST and Vanilla shakes have been All I can do to maintain my weight  I am constantly in pain and sleep at least 12 hours a day.  This is not complaining but rather giving you all the facts..

 

The good news is after 3 years the wound on my head finally closed, though my head is scarred and numb and still BALD! I have to take what little progress I have to take what I can when I can.

  

While Tammy's love has gotten me through  this ordeal, I know what a burden I am and wish she did not have to suffer along side of me.  She has become my driver to at least a daily trip to some doctor. Between that and the skilled nursing home care we no longer have a quality life.  Grant is a challenge and we have worked through some issues with him, but between the two of them I still believe I am the luckiest guy in the world.  We had planned a cruise for December but cancelled it due to me.  I would have needed an entourage just to get there.