My Friend Jon - A Real Fighter!

Yesterday I received an email from my friend Jon (The picture to the left is us on my 40th birthday last year in Phoenix). Jon and I used to work together in Phoenix about 10 years ago and have been friends ever since. He has battled Hodgkin's disease over the past 12 years and has beat it into remission 4 times. We almost lost him last fall, but he beat the odds and is still with us. We, as runners, train hard, deal with pain, and sometimes injury, but we are blessed to be able to run and to be healthy. I know Jon would give anything to go through our "pain" and be able to run.

The email that I received from Jon is below. Despite all his physical issues, his spirit and mind are both strong and positive. He is truly an inspiration to me and I am proud to call him a friend. Please keep him in your prayers. LiveStrong Jon!

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Well, I am sorry for the long delay in getting out an update. The last couple of months have been a bit of a struggle with many different things happening. It is never boring around the Moss house…..

Cancer: We don’t have any indications of active cancer at this time and we are very happy with that. Remission is always a great word to hear!! I am having some issues with what is called GVHD (Graph vs. Host Disease) which is an ongoing side effect from my bone marrow transplant in 2001. What it means is my brothers white blood cells(which my body now makes after the transplant) see my healthy cells as “foreign” and wants to eliminate them. When it happens in the lungs, which is what we think is the case right now, is that it limits my breathing and I am on oxygen 24/7. We are trying a chemotherapy drug called Rituxin which may help reduce the GVHD. This drug is one of the new drugs that fight just specific cells and has virtually no side effects. I had treatments each of the last 4 weeks and have 4 more to go. So far so good, but still no improvement.

Heart: It is working better. My heart function tests out at 45-50 on a scale where the top is 65. Yes, I know, that scale makes no sense, but I just go with the numbers they give me. As a point of reference, when I was in the hospital back in November I was testing out at around 25. As my lungs improve I will be able to do more rehab and hopefully improve some more on the heart.

Voice: After being on the ventilator for so long with my heart surgery I have damaged my left vocal cord and it no longer works. There are a couple of surgical options that could give me some slight improvement in my voice, but I cannot do the surgery until my lungs get better. (notice the ongoing theme with the lungs)

Eye: Yes, this is the newest chink in the armor. I have had cataracts surgery in both of my eyes already, which is a side effect of all the Prednisone (steroid) that I have taken. My vision started getting blurry in my left eye about 2 weeks ago and so finally last Friday I went in to get it checked. Initially they thought I had a detached retina, but then realized I had a rare viral infection in the retina of my eye. I guess it is very aggressive and if I had waited over the weekend to get it checked out it would have progressed too far and I would have gone blind in that eye. I have been taking IV drugs every day for the last week with one more week to go. It looks like we caught it in time.

Hip: Last July I had my right hip replaced and it has been fantastic. The problem is now my left hip has degenerated to the point where it needs to be replaced. My orthopedic surgeon can do it by using an epidural so I don’t have to go under general anesthesia, but I need to get more stable with my lungs before we can do that. For now I just use a cane to help get around. (this issue is also caused by long term steroid (Prednisone) use)

Blood Counts: I am “anemic” which means my red blood cell counts are low. This affects my energy level and stamina because the red cells are the vehicle that carries oxygen throughout your body. We are trying some drugs (EPO/Procrit) to increase my red counts. They are the same drugs the cyclists use for “doping” in the Tour de France.

Lungs: They are the big mystery. I can breathe just fine when I am sitting around but any time I do anything to cause exertion I quickly become short of breath, even with my oxygen. Pray for the lungs, they need all the help they can get!!! J

Quality of life has been low lately, but we keep pushing along and know that it will get better. Both the girls are headed out of town on separate trips. Alison to Costa Rica for 3 weeks to teach kids English on a program through the U of A, and Emily to Nebraska to ride horses every day. That leaves Kaylene stuck with me all by herself. Now I have to figure out if that is a good thing or a bad thing. J We are hoping for some peace and quiet and a chance to recharge our batteries. I would be a lot easier if it wasn’t so damn hot………..

Thank you for all of your continued support and prayers. We know we will get through these latest challenges because we have such an amazing support group of friends and family. Alison and Emily have been amazing at taking care of me this summer and have made things much easier for me. I am so proud of how well they have grown up, but I guess I might be a little biased. They had a great teacher in their mother who is my ultimate caregiver!!

Love & God Bless

Jon