January Visit to MD Anderson

I got back from MD Anderson late last night. It was a rather uneventful trip in the sense that I didn’t have anything besides a few blood tests done. No bone marrow biopsy, no EKG. Just a lot of time spent talking to people about finding co-pay assistance. It might end up looking like I may just pay the cost of the medication myself (with dad’s help). Assistance programs are kind of like college scholarships. People tell you there are tons of them out there, but it’s difficult to qualify for most of them. I either don’t qualify because I have insurance or because I make too much money. Ideally, I would either not have insurance or be a member of the working impoverished. In other words, I’m stuck in between two places I’d rather not be. I’m kind of like tea, it’s good when it’s ice cold or hot, but nobody like it lukewarm.

My doctor is great. I am thankful that he is in charge of my treatment. I won’t spare anyone to death with the details of why he’s so great, but it’s a breath of fresh air to have a doctor who isn’t rushed, who answers every question, and then sticks around to make sure we don’t have any other questions that he can answer. My blood counts look good, although that’s the most superficial result to look at and the last thing to be affected. Our concern is more at the cellular level, the chromosomes that produce my white blood cells. Those need to disappear for us to consider standard therapy successful. Dr. Cortes said that being off of my medication for 20 days could affect how we see the results of a biopsy test, so he decided that it was more pressing for us to talk to people who might be able to help with medication. After all, decisions about a medicine working or not must be made when therapy is continuous. The last thing we want to have to answer is whether the Sprycel is not responding due to a mutation or because I haven’t been able to afford my medicine.

My next appointment is scheduled for the end of march. Hopefully, by then everything will be back on track and I can start planning on the costs I’ll accrue next calendar year. This has been extremely eye opening for me. I know it has been for Katie too. She offered to go for support and has seen how difficult the process can be. If there’s one positive, it’s that we are being individually challenged to see things from a different perspective. I can’t speak for Katie, but I know that these experiences will strengthen my grace, mercy, and empathy for other people and what they have to go through. My situation isn’t ideal, but all I have to think about is me. I couldn’t imagine having a family and learning the game of insurance while trying to provide for them. I can afford to make my mistakes now, whether it be not paying close enough attention to the details of an insurance policy change or not putting more into an HSA. Not many others are in that position.

In the end, something good has to come from it. I have to to learn. I have to process. It has to make me a better person.