Friday, November 20, 2009

Two Sides, One Coin

A lot of the blogs that I started reading when I was diagnosed don't have many new posts anymore. People's lives return to something close to "normal" or they die. In both cases, they stop posting.

For me things have gotten back to something resembling normal. I've been back at work full time for over 6 months, my side effects have subsided to the point where they're annoying and frustrating but I'm learning to live with them. I still get tired more easily than I used to, my digestive system is unpredictable at best and I'm pretty much always in some sort of discomfort from it, I'm 30 pounds heavier than I was when I was diagnosed and my muscles cramp up quite painfully all the time. All in all, not too bad given what I carry around inside my blood.

The same is not true for all with this cancer however. Over the past year I've corresponded with a woman whose son (roughly my age) was diagnosed with CML and subsequently failed Gleevec. He had a stem cell transplant and had passed his 100 day mark with flying colors.

Then I got an email last week that I will let speak for itself:

I am praying you are still doing well on your CML journey. Sadly, I have to tell you that my beloved son, Robert*, passed away on Friday, Nov. 6. Since I last emailed you, the sharp pains in his back turned out to be relapsed leukemia in his spine. Sometime during chemo, the leukemic cells passed through the blood/brain barrier and formed chloromas. In July, he was unable to have a bowel movement for 3 weeks. We went to many doctors and they all told us there was no blockage and keep taking laxatives and painkillers. We took him into the local ER on July 24 and after a CT scan they sent him home with more laxatives. By the next morning, Robert could no longer walk or urinate. We rushed him to the ER in Hackensack where he had his transplant and an MRI showed a leukemic tumor engulfing his spinal cord. He underwent surgery and radiation treatments. He was only able to walk with a walker after that but he was determined that with PT he would walk again. But the pains started again in his back and the scans showed that the tumors had spread to his entire spine and he was radiated again. He even underwent a donor leukocyte infusion (DLI), but there were still signs of white cell abnormalities. Hackensack told us that they were out of options and suggested we head down to MD Anderson in Houston for an experimental drug trial.

We left here on Oct. 11 for Houston and in less than 4 weeks, he was gone. He never got into the trials. When we met with Dr. Cortez, Robert was coughing and we were told it was due to radiation of his neck area. But it turned out to be pneumonia and he was immediately put into the ICU there. He was also given a round of chemo which I questioned since he was so vulnerable at the time. They tell us he had a drug reaction to an antibiotic and he got Steven Johnson Syndrome, actually TENS, as his body blistered over 90% inside and out. He was transferred to a burn unit to dress his skin daily but the disease took everything from him. He was on a breathing tube the final week of his life. He was blinded, unable to speak, no mobility, just nothing. It was a horrific death but he is at peace now, we are sure. He was taken from us way too soon.

God bless you and Wendy. My wish for you is to have many, many more happy NORMAL years. Hopefully, soon there will be a cure for all cancers.
* I've changed the name at the request of his mother.

My heart goes out to his mother as well as his entire family. It's not fair and it's not right.


Anonymous said...

Matthew, I can't imagine dealing with your own health issues and coping with other people sharing their situations, often not uplifting. We love you guys so much.
Dad & Mom oxoxo

the moore family said...


Thanks for sharing this. I know that I, all too often, take Gleevec for granted. I am so blessed that it is working for me. This story brought me to tears and his family and friends will be in my prayers! He sounds like he was one hell of a fighter and you're right - it's totally not fair!

Annie - Steven's mom said...

Oh No!! This is so terribly sad and totally unfair! I am sorry Matt, that you are going through the issues you are and I am sorry that you will experience the loss of this young man too.

Sending you and Wendy bunches of love and light

hockeychic said...

Oh this is so sad. Just broke my heart reading it.

I'm glad that you are doing o.k. and am sorry for the side effects.

Wishing you and Wendy well.