Day -4

Last night I got my first glimpse of what is to come when the honeymoon phase of Chemo ends. I didn’t ask for drugs early enough to curb my insomnia, which as midnight, turned to 1am, turned to 2am, turned into a massive headache with deadly nausea that felt like my orbital bones were going to shatter outward like the Big Bang, and my eyes and brain would follow suit. I ended up asking for Tylenol around 4am to ease the pain not realizing that it was nausea disguising itself as a migraine, but they were only able to give me codeine, since Tylenol and Advil mask fevers which is how they catch infections quickly in the Transplant ward. By 6am when my nurse came in to do my bloodwork I was a sobbing mess because I was so distressed about not sleeping. She brought me a gravol which made a huge difference, and by 7:30 I was up, showered, dressed and ready for breakfast feeling like a million bucks again (Thanks steroids!) All the nurses, doctors and the whole team on this floor is just so top notch, I can not say enough positive things about the people here.

Today was basically the same as yesterday, a one hour chemo drip of fludarabine, followed by a three hour chemo drip of Busulfan. The steroids make you crazy hungry, so I actually feel like I’ve eaten more in the last two days than in the last entire week leading up to checking in haha. In between all the eating and dripping of course are lots of checks of vitals, 3 showers a day, Lots of walking around the ward and biking in my room. My doctor reminded me today that the bed in my room was my enemy until I could no longer get myself out of it, and that it would be best for my outcome if I pushed myself now to stay as physically active as possible to reduce the likelihood of pressure ulcers and muscle wasting and I’m taking his suggestions to heart and trying to put in my laps and such.

Today my counts were up a lot which was confusing at first, but that’s apparently just from the steroids. My nurse explained that they would start to look like they were climbing, but once the chemo kicks in over the next couple of days they would begin to free-fall.

Tomorrow we will follow the same schedule as today, but after the first two drips I will be having a six hour drip of Rabbit ATG, which is exactly what it sounds like- a Polyclonal antibody produced by rabbits that helps delete T-cells in humans. This will hopefully help reduce the risk of graft versus host disease (GVHD) during my transplant. Graft versus host is a tricky topic when it comes to transplants, because it has many forms and levels of severity that can often be hard to spot and control, especially once you leave the acute phase of GVHD and start looking at the chronic (after one year post transplant) phase. Graft versus host is essentially an immune response against your donor’s cells where your body tries to reject them. The tricky party about GVHD is that for my particular type of cancer, you want mild accute GVHD to appear, because that triggers something else called ‘Graft versus Leukemia,’ where the immune attack response from my cells against my donor cells, triggers a similar effect within the donor cells, where they begin to attack any of my left over CML cells that weren’t destroyed by the chemo. In CML this effect is particularly strong and gives you the best odds of not relapsing if you are able to trigger that response.

I don’t think I mentioned it in any of my earlier updates, but this week at my final clearance, I was told that an administrative error was made when I was assigned to radiation, and that my radiation fittings should never have happened- because I’m not having radiation at all! PMH recently made the decision for my type of cancer to remove Total body Irradiation from their treatment protocols as long as the patient was having the full course of chemo, which I am. I was accidentally assigned to the old protocol and booked in for an appointment. I was so relieved when I found out! The radiation definitely scared me a bit more than the chemo. It even means that the Lupron injection I got to try and preserve my fertility might have a higher chance of working now!!

Anyways, tonight I took a sleeping pill early and I’m gonna knock my ass out, for a 9 hour day of chemo tomorrow! <3

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