Monday, December 17, 2007

I can't catch up...

I had planned to write about the whole CML adventure... but I'm too tired. Instead, let me catch up to the present really fast with some bullets.

  • Got atypical CML diagnosis from first hemotologist. He referred me to MD Anderson

  • MD Anderson medically approved me and I got assigned to the chairman of the Leukemia department

  • Insurance, after about 1000 phone calls, faxes and millions of prayers agreed to refer me to MD Anderson (MDA). The insurance has yet to tell me what percentage of the bills they will pay

  • First appointment with MDA was a long long day and included the first of many bone marrow biopsies. It sucked, but wasn't as bad as I thought it would be.

  • Met doc a week later and got the confirmation it's CML and got into a trial for Sprycel (dasatinib), a second generation drug like Gleevec. Supposedly 300 times more powerful and less side effects (more on that later).

  • First week of the meds I was still working but with a monster headache and some slight nausea. Kinda felt like a hangover I guess.

  • Second week on the meds was worse, but I met the bone marrow transplant team and they are great. Only will have a transplant if the chemo drugs don't do the trick.

  • Trying to find bone marrow match. IF YOU ARE INTERESTED IN BEING A DONOR LET ME KNOW, or check out

  • Swelling became a problem and the bone pain from the chemo doing its work began to interfere with work.

  • Third week of meds I had 99 or 100 degree temp and was in bed almost the whole week.

  • Blood levels (white blood count) are dropping fast. Part of that is good news and part of that can be a problem since dropping the red blood count makes me feel like I can't get enough air and getting to the bathroom is like hiking a mountain.

  • Family and friends have been very very supportive.
  • A friend who is a filmmaker is doing a documentary about our journey with CML.
  • I spoke with the mayor of Houston about my diagnosis and how I believe it is caused by benzene. Houston has the worst levels of benzene in the country, and I grew up in one of the county's worst areas for benzene and other deadly air pollutants.
  • The mayor's office called and asked me to speak about my cancer at an EPA hearing on refinery risks. I did. The Houston Chronicle took a lot of notes and photos, but not much more than a mention as of yet.

  • Lili is doing great and is very helpful. She did have a few meltdowns at school, but we talked through some of our fears and decided to focus on the right now and have as much fun as possible.

  • I conjured up enough energy to go to the Mother Daughter mass at Lili's school. It was lovely and Lili gave me the best letter ever.

  • We held a fundraiser for Lili's tuition and as of today I think we have all we need to pay off the school note for this year.

  • Daisy our dog has been especially attentive, and I think that she thinks she is healing me with every snuggle. Perhaps she is right.

  • Lots of folks have written, sent cards, donated money, called, and emailed. Lili and I both appreciated it and hope that you can continue to do so as we are encouraged by your support and interest in our lives.

  • Dana, a friend of ours, is helping coordinate some of the offers to help with some of our needs. You can email if you are interested in coming over for dinner and hanging out, or perhaps handling a school pick up.

Whew...I think that's it for the moment.

At present, we are trying to get into the groove of the holidays. I preached at church on Sunday and Lili and I have enjoyed being out of the house and with friends and family. The only problem is that if I am up and about for 4 hours I am in bed for the entire rest of the day. It's not like we are much on watching tv and reading leads to sleep, so I am starting to feel more 'sluglike' every day.
Good news is that the swelling is down, I have decided to try to eat as much vegetarian and raw food as I have the energy to prepare/purchase. Docs say that my kidneys and liver are doing well with the chemo and handling all the fallout from the chemo doing its work. All I can say is it better be doing something other than just putting me to bed!
More news to come. My sister is coming into town for Christmas and Lili has her first finals of high school. I'm sure there will be more to share soon.

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