Finally! Some treatment.
However, I do not feel I have been well-served by the medical community.
I mentioned that I have been tested and re-tested by the thoracic surgery people at UW Madison. There has been no treatment. I was diagnosed at the end of July, and still no treatment.
I received an MRI on Nov. 7. This has not spread to my brain. Yay! But think about it: July 29 to November 7 with no treatment.
I went to Madison and met with the radiation oncology team. They, too, were surprised that there has been no treatment yet. They put me in touch with their colleagues in Rockford at Swedish American. Swedes is a branch of UW Madison. These people are supposed to be the best in the country.
They did get me set up right away with radiation treatments. They seemed more interested in getting me involved in a study of atezolizumab than anything else. They regarded me as an ideal candidate. At first, I was willing to go along with it, although the possible side effects sound brutal. Then, the more I heard, the less I was interested. A research nurse went over everything with me. I decided I would not do it. The doctor told me that if I read the side effects of aspirin I would be reluctant to take aspirin. I agreed to stick with the plan and enter the study.
Of course there will still be some delay. They are not going to start this on Thanksgiving day or anything like that. A week or so seems like a reasonable delay to get things going.
Appointments were set up. I was scheduled for radiation right away, since this immunotherapy treatment is done in conjunction with radiation.
I asked for a timeline. Remember, four months have now passed. How long before this cancer spreads and is no longer early stage? A nurse there, let's call him "James," gave me a figure of 43 days. It would take time to pull everything together. I did not pull this number out of thin air. I swear I did not.
I am fragile already. I nearly collapsed. I spoke to the main doc about it. He told me that his department, radiation oncology, had not delayed anything. This is true. He wanted to know where I got the 43 days number. I told him. I told him I could not stand another long delay. I kept repeating the part about 43 days. The doc told me we were talking in circles, at cross purposes.
My husband noticed my mental health. This is affecting him, too. We are both in a bad place.
I went in to see the doc. I told him I was still willing to participate. I wanted to know how it would be paid for. He said Medicare usually paid. Sometimes they had trouble with some of the supplements. I told him that I was still willing to participate in the study if Medicare and my supplement would pay. I could not figure out why the study itself did not pay. I am not willing to bankrupt us for this study. He told me that I was no longer a candidate for inclusion in the study. I guess I am too bitchy, too unstable and I ask too many questions.
I think they only cared about me because on paper I looked like an ideal candidate for their study. I am not a person, just a name on a file folder.
I will be getting the radiation in five concentrated doses. This is still early stage. I could still be cured, with or without the immunotherapy treatments and study. This will begin in early December. Think about it: August, September, October, November and now early December. I think it is amazing that it has not spread to my lymph nodes and brain. Also, I think I have a right to question the delays in treatment, the testing and re-testing when the first tests were good and positive for my diagnosis.
I hope things go well from here. Thanks in advance for your prayers and good thoughts. I don't know what I would do without my husband and this group.
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It is disgraceful how you have been treated by the medical community. It's just a miracle that in all this time, it didn't spread. 
