45 days ago, I checked into this hospital with the intention of kicking the ass of the Acute Myelogenous Leukemia that I was diagnosed with just 6 days earlier. I felt like I really didn’t have a choice. It was either do that, or live out another couple weeks to months, each day with less energy and unable to make it as long on my feet. I had no intention of checking into a hospital, only to never leave. I was doing pretty good believing the doctors and convincing myself that wasn’t going to happen. I would be out in 4 weeks or less, because my age suggested no complications. At that point I would have a little time at home before consulting to see if a Bone Marrow or Stem Cell Transplant would be necessary, or if consolidation chemotherapy would work for me.
Day 14 after the end of chemo, and I have a Bone Marrow Biopsy/Aspiration to look for Leukemic cells. And the results come back. There is no evidence of disease! Can’t get better than that! And I’m on my way to destroying this thing. My blood counts are low, I’m feeling a little off, worried about getting an infection and basically self-ban visitors, but my spirits are high as I wait for my counts to return.
And a week goes by, could start any day. One doctor suggests I could be going home on day 25.
And another week goes by. Nothing.
And into another week. Another Bone Marrow Biopsy/Aspiration is done, this one with Flow Cytometry. Still no evidence of Leukemia, but basically no evidence of any cells at all. Doctors expect them to climb.
And into another week. Doctors bring up that maybe the dose of chemo I was able to get because of my age and over all health might be delaying the recovery. That theory lasts a few days. Then the doctors suggest that perhaps there still is Leukemia that just isn’t showing up because all cell counts are so low, that may be interfering with bringing up my blood counts. Apparently, their tests are not sophisticated enough here to make sure that those negative results were truly negative. I am told that in Seattle they can run a test with certainty that would show any even with very, very few cells available. While all this is going on, I am told by my doctor that he has consulted with a doctor in Seattle and I definitely need a bone marrow transplant. He also said that if my counts do not come back up it would not be that big of a deal because they would just be wiping them out for the transplant anyway. Okay, not the news I wanted, as transplants are rather scary things, but let’s get moving on it if that’s what must be done. My spirits while somewhat frayed, remain intact.
So Monday, I have a large amount of blood drawn for HLA testing (among other tests, obviously) and sent to Seattle. This was all from an order created Friday by a doctor up in the transplant center I will likely be having this procedure done at. So on Monday, I give my brother and sister the number to the testing people in Seattle, so they can get their own testing started. And here is the beginning of the end of my optimism. (Don’t get me wrong, I have had my share of bad days along the way, but always managed to pull out of them.) My brother is asked if my insurance has pre-approved the testing. He is also asked what specific type of testing was ordered, where the testing would be done, all things that should have been in the order on Friday. I call my doctor’s office from the hospital and ask them to find out what the f_ck is going on. I get a call back from my doctor telling me that I should have them wait until Wednesday, because, even though the order was done Friday, they would not yet have me in the “system”. So on Wednesday, my brother calls and finds out that I am in the system and that the order for them to be typed is in there. Not only that, but it is a rush order. Great! Well, no. Because they won’t test until they receive authorization from my insurance company, which can take 2 weeks. 2 more weeks of my counts at bottom. 2 weeks of my immune system being comprised exclusively of antibiotics. 2 more weeks of languishing in a hospital room.
And here’s the kicker. Everyday, something seems to get a little worse. So far, since my counts have been at or near zero, I have had nightly fevers. Today, I hit 101.1 right around noon. That is a first and not the kind of first I am looking to have happen.
Make no mistake my friends, even with good insurance, people’s fear of not getting paid and slow processing ability can still kill you.
45 days, heavy chemo, antibiotic side effects, drug cocktails that make an AIDS patient feel bad for me. I’ve fucking done my part. I need these assholes to do theirs. Perhaps if they do so before I get worse and can’t keep up this fight, my optimism will return. But for now, I am in realism mode, and the reality is that red tape may kill me.
If you want to talk to me about how important it is to keep a positive attitude, try walking in my shoes right now. I don’t like feeling negative. I know it doesn’t help. But you’re not shivering from fevers when it is 75 in your room. You aren’t the one sleeping 4 hours a night maximum, and all of that broken. You aren’t the one who knows that without additional treatment, relapse is inevitable. You aren’t the one who swears you can feel it coming back.
If you were looking for inspiration in this post, I’m sorry it isn’t here. I just wanted to let anyone who cares know what is going on. I hope to post some more. Maybe those will be with good news. Guess that last sentence is sort of optimistic, right?