It's been about a month since my last blog and I saw Dr. Bixby today so I figured it was time for some sort of blog update, although nothing super major has changed.
After I got diagnosed with pneumonia back in September we realized I needed to do some serious end of life planning, no matter how depressing it is. While I was in the hospital we went through the process of closing all of my $0 balance credit cards and transferring all of the utilities into Alan's name. After I got out of the hospital we started looking at different funeral homes and cemeteries and pricing things out. As anyone who has had the misfortune of planning after the passing of a loved one can tell you, dying is seriously so expensive.
It was a bit of a morbid day but we got a lot of useful information and although we haven't finalized anything, we are pretty sure we know where we are going to go. I was having nightmares for about a week after we went, but it's a small price to pay for Alan to not have to navigate all of this on his own when the time comes.
As for my health, things have been pretty steady to slightly improved in terms of quality of life since ending the clinical trial.
My mouth and throat ulcers healed for the most part, but I have really swollen gums in a few places (including the roof of my mouth) which is causing me to still have some texture and taste issues. I've also started vomiting quite frequently so today we discussed adding a dissolvable zofran tablet in addition to the nausea med I'm currently taking. I'm also on a strict, scheduled regiment of both lomotil and immodium which is keeping my previous bathroom issues at bay.
Due to low platelets I'm experiencing a lot more bleeding and bruising. I hate looking at my body in the mirror because all I see are cuts and bruises. I swear just lightly running my hand over an area can cause bruising and I also keep finding these random wounds, like areas of skin that just burst open for no reason. I also had the incident with the ruptured blood vessel in my eye that landed me in the hospital for a couple days and still hasn't healed. The unfortunate thing about low platelets is that I can just start bleeding from anywhere, at any time, for no reason. The big, dangerous ones are if I develop a bleed in my brain or in my intestines. So I need to be extra careful not to bump anything.
Another thing I struggle with is breathing with exertion. I can't really go anywhere that requires walking more than 10-15 steps without taking my wheel chair because I will be gasping for air and near collapsing. Around the house I will be racing back to my bed or chair after doing something as simple as brushing my teeth or washing my hands because standing that long was just too much. Not sure if this is because of low hemoglobin, dehydration, just a side effect of the leukemia, or some combination. I used to only feel this way when my hemoglobin was really low, but now it's pretty much permanent.
As for the leukemia itself, the percentage of blasts in my MWF blood draws has been slowly creeping up. Monday it was at 36% (I havent gotten today's results yet) sometimes it will randomly shoot back down on a blood draw but then it goes back up the next one.
I've been trying to get out a little more now that some of my symptoms have gotten better. We've gone to the movies, the cider mill, a wedding, and the zoo. I'm not very good for going out to restaurants until I get the spontaneous vomiting thing under control. Yesterday we had gone to Texas Roadhouse and I had to stop eating after 2 bites of my mashed potatoes because I was afraid I'd have to turn the peanut bucket into a puke bucket.
Today I saw my doctor and we talked about possibly going back on some sort of treatment now that I've been 2 months off the trial and solved some of the issues that were really causing me pain then. Several options that we brought up to him (that I read about through my facebook groups) he explained that they weren't a good candidate because they were the same or similar but weaker than chemos that I've already tried before that either failed or stopped working. He explained the cancer cells are kind of like bacteria that becomes antibiotic resistant. So since I had done X treatment and it didnt produce a sustainable remission it is likely that the leukemia cells that relapsed (and are now multiplying) are immune to that type of chemo.
We also asked about the MYLOTARG which had been discussed before I went on the clinical trial but he said there was recently a study of that drug that basically showed if you had already gone through 3 or more types of therapy that MYLOTARG is even less likely to be effective. That one already had a low probability of working but with that new study it's even less and would mean committing to a month in the hospital to monitor for complications like infections, etc.
He also told us that he is keeping his eye out on clinical trials and I'm at the top of his list if something comes up. He said there is something in the pipeline now but it won't be taking participants for another 3-4 months while more safety checks and evaluations and such are done. So basically if I can outlive the trial getting off the ground then that could be a potential option for me in the future.
At the end of the appointment I asked him the big, intimidating question. I wanted to know based on my current condition and the fact that I'm not being treated how long does he think I have left. He said he cant really tell me that because I've already pretty much exceeded it. On average people who decline further treatment or run out of treatment options survive 2-3 months. I'm currently 2 months out from stopping treatment. He said though to also keep in mind that factored into that average survival time is the fact that the average age of an AML patient is 68. So, I've got my age and relative health/strength coming into this on my side. He said he's seen someone live as long as 9 months after stopping treatment, but that is a pretty rare case.
No matter what the timeline is, I'm thankful for each new day I get to spend here with my friends and family. I'm thankful for each day I get to continue loving my husband and being loved and cared for by him in return. He is the true hero of this story. He makes sure I'm fed even if it means going back out for some food I have a random craving for, knowing I'll only take 2 bites of it. He helps keep my infection risk down by making sure I shower or brush my teeth even when I dont want to because I dont have the energy. He does all my laundry, all the shopping, all the cooking. All the household chores/maintenance and auto repairs (which have become more frequent on our 10 year old car). He makes sure I take my medicine, he administers IV magnesium and fluids, he cleans and flushes my PICC line on my non-appointment days. He drives me to Ann Arbor in awful traffic 3x per week most weeks, and then sits and waits in uncomfortable hospital chairs for several hours while I get my labs and transfusions. There's no one else* to do all of this, and I most certainly wouldnt have made it this far without him.
Until next time...
* When I say no one else, i mean it is like a needle in a haystack to find someone else to drive me during times where Alan has been sick or injured at the time of my appointments. There are a select few people who have gone out of their way and helped occasionally, and I owe a huge thanks to those people too.
