There were some major complications with getting my insurance set up in early October. I had filled out all the forms and submitted them a month in advance, but they weren't processed. Then, I got a bad cold which moved my treatment to the first couple days of October, which meant there was almost no time to get everything sorted out. It meant a lot of hours on the phone with the State of Illinois, Aetna and my doctor. In the end, everyone did what they could to make it work, and as it turned out I was still not well enough on that day, so we postponed a few more days. Everything is settled now and I am thankful to have access to health insurance through the teacher's pension system, especially given the uncertainty around Obamacare or the high costs of Cobra.
I had a CT scan late in October. The spots on my lungs shrunk a few millimeters (~10-20%), which is a good sign that the cancer is responding to the treatment. The treatment is considerably harder on me than the previous ones, though. I still have unpredictable gastrointestinal issues, though that has improved slightly. In addition, I get severe acid reflux about days 3-7 after treatment, and then deal with side effects from that for the rest of the two week cycle. It's been very frustrating as nothing seems to really help.
I also get an acne-like skin rash from the Erbitux that is controllable with medication, but nevertheless is irritating. It has caused issue with my finger and toe nails that are hard to get to clear up. I also have been losing significant amounts of my hair over the last couple of months, which isn't a huge deal, but is accompanied by a very itchy and sore scalp that at times drives me crazy.
I hesitate to complain so much, but the worst part has really been the isolation that the treatment forces on me. The GI symptoms make it hard for me to be away from home for any length of time, so getting to church, Wheaton sporting events or to visit people has been virtually impossible. My friends and small group at church have been accommodating by letting me interact with them over Google Hangout, but it isn't exactly the same thing. I also miss working, both the people and having something that interests me to keep me focused and motivated.
I am hoping to take a break from treatment over the holidays. I need it both mentally and physically and the good results from the CT mean that it shouldn't be too big a risk. I am hoping to be able to get out and do some of what I've been unable to do, and to go home to see my family in Maine.
I did make one trip to Maine in September for my niece's birthday. It was great to see them and I enjoyed doing it. However, in the planning of it, I had to think a lot more about money than I have in the past. A spur of the moment trip was never one that I had think twice about, but being on disability presents financial challenges that I haven't had to face for more than a decade. I'm hopeful that I will be able to return to work next Fall, so this won't be permanent, but there's no guarantee and in the meantime, I need to be wise in how much debt I rack up during this year. Having the opportunity to see my family, though, feels like a worthwhile use of my limited resources.
Thanks to all of you for your thoughts, words of encouragement and prayers. They mean a lot to me!
Posts
