Today I met with my Dr at MD Anderson to discuss the results of a series of studies I had yesterday. The intent of the scans and blood draws was to gauge the response of my January radiation treatment. As has been the case over the past few years, my situation continues to challenge and baffle me, my family, and my doctors. There are basically 3 areas that were measured on Tuesday:
1. Radiologic measures of tumor size and appearance including MRI, CT, X-rays, and ultrasound of my neck, lungs, and back.
2. Blood tests for a protein secreted by the cancer cells in my body that is a pretty accurate measurement of how much disease is present
3. Blood tests for side-effects of the radiation treatment including red and white blood cell counts
The results are as follows:
1. No major change either bigger or smaller of the disease in my neck or lungs. And evidence of improvement of the single known bone metastasis in my 5th thoracic vertebrae
2. Increased by 40%
3. Both down, with one of my white blood cell counts (neutrophils) pretty low.
So, there are both good and bad signs. First, we’re really happy that the treatment had a positive effect on the bone met. The bad news is that it didn’t seem to do much for my lungs or neck and for the first time ever, my tumor marker really went up. The latter is super scary because we don’t know the details associated with that increase, like whether or not I have disease in areas we didn’t look (e.g. brain, pelvis) or if the neck or lung disease is growing more quickly and no longer responsive to the treatment I received in January.
Maggie was with me to meet with the doctor today. My mom also came to stay with Cassidy at the hotel. My mom seems to be doing pretty well but Maggie and I are both scared, confused, and very angry. One of the things most annoying is that one of my scans that had been scheduled for me yesterday got canceled because insurance didn't approve it. The purpose of that scan was to answer some of the questions we're left with. Unfortunately, insurance now doesn't have a choice...I have to get a PET scan, but will have to do so back in St Louis in a few weeks. More waiting.
5 comments:
More proof, as if we needed it, that the insurance companies are completely messed up. I'm angry at them and furious at this *&%$ disease. I'll keep my fingers crossed until the next scan.
I am struggling with emotion on this one, Dan. We are all here for you if you, Maggie, or Lil' C need anything (especially an ear for screaming). Please let us know. Stay strong.
That completely sucks about the insurance company. It's bad enough you have to deal with this (*&$&^%-$&!@#$ cancer.
We're just damn scared and feeling completely helpless around here. Let me know ASAP when you're going back to Houston and I'll clear my schedule and be there again. Sure wish we could have had more time.
Judging from the other comments here and on facebook, you are loved and admired by a whole load of people and we're all pulling for you. I hope that can be a source of strength.
WIN!
So I've been thinking about my new career path, and I'm pretty sure it's settled. I'm hoping to work for a major insurance company, and be put in charge of approval/disapproval of any and all crucial procedures related to major life-threatening illnesses. It looks like that would be a very rewarding, full of joy, and the kind of job where you would make new friends daily. You know, the kind of job where you help people.
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