It's getting harder to write this blog as my brother gets sicker. We received his diagnosis, chronic leukemia. We haven't sat down yet with a hematologist because we are in transition between the first and the second. The first, frankly, should probably retire. I know that sounds ageist, but I figure I can say that, he is about my age. He couldn't stay focused in a discussion and was quite forgetful. He was disrespectful and kept on telling me I shouldn't expect to understand anything, that as his job and that many other doctors didn't understand hematology. That may all be true, but I wasn't about to trust a complete stranger, who wanted to do a lot of intervention, to make the sole decisions. Furthermore, when he started talking about my brother taking mystery shots, I asked if he could have them done in the nursing home, and the hematologist became quite upset and started muttering about I would be on my own in obtaining the medication. I think this is because he wanted to make money off the office visits.
So I was able to get a referral from one of my husband's good friends who is a doctor at Northwestern Hospital. She seems to be highly regarded, works out of Evanston Northshore, but we couldn't get an appointment until August 2. Meanwhile, I also retained a palliative doctor, another woman, who I really like and seems ready to help manage my brother's care. This is supposed to be the job of his internal medicine doctor, who seems to show up once every 3 months because that's all that Medicaid will pay for. Medicaid will pay for monthly visits from the palliative care doctor. I am waiting for a full consultation with her until after the visit to the second hematologist, and are informed of the various choices in treatment, which makes sense to me.
There is a very big issue about how much to tell my brother. I don't think he has the emotional where with all to deal with cancer. The general consensus so far is to tell him he has a serious blood disease that we are going to try and treat, but to avoid treatments that will cause him discomfort. I am not really sure where this new hematologist is at on this issue, and the palliative care doctor offered to call her and chat about it. I am going to have to just trust both of them, I can't control much.
My brother has good days and bad days. On bad days he can get pretty grumpy. I take him out for dinner with my husband on Wednesdays, and I can tell when it's a bad day because he looks very tired, holds his head in his hand, and picks fights. Sometimes when we walk into the parking lot, he just stops walking and looks distant, and we can't get him to budge. I am beginning to think this is because he is not getting enough oxygen to his brain.
Last weekend we took him to see Wonder Woman and we were all pretty jolly because it was the first time in a long time that he was feeling well enough to take him out beyond dinner. So it was a real surprise when he got out of his movie seat and went into the trance again. He thinks it is his heart (it probably is) and I think it really freaks him out. That episode really scared me, but after resting for 5 minutes, he seemed ok.
He is on a lot of lasex and it is causing him to loose control of his bladder a lot. He needs to have his pants changed every day, and I need to ask the nursing home to change him more often. He also has fat concentrations under one eye that may come from the diuretic (looked that one up on the internet; he is feeling so poked and prodded I don't want to have to take him to an eye surgeon unless we have to).
I have been crying a lot. I am very fearful about what the future is going to look like and how long it is going to take for him to die.
But today was a good day. He was feeling pretty good and even remarked how surprised he was that he wasn't feeling as poorly as before. I will take those good days.
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