Hi! I'm Cadence

I was diagnosed with Chronic Myeloid Leukemia on February 12, 2018. This is my story.

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DAY -2 to Day +3

Hey Guys,

Sorry for falling off the map for a bit. The honeymoon ended rather swiftly, with much nausea, vomiting and fatigue, and pretty much made it impossible to do anything other than sleep in between. The fatigue wasn’t quite what I expected, it reminded me a bit of having MONO in college, where you basically sleep non stop, only it was combined with nausea reminiscent of teenage-hood hangovers. It definitely all blended together a bit, but I’ll try to break it down.

DAY -2
I started feeling really nauseas and had no appetite whatsoever. They scrambled for the first day to switch over the 20+ pills a day you take during transplant to IV since I couldn’t even keep water down. Then they started loading me up with fluid because I was so dehydrated. It was a rough and quiet day. It’s hard to get a consistent sleep in the ward because someone checks your vitals every four hours, even through the night, and then they wake you up at 6am for blood work. You definitely end up sleeping wherever and whenever you can to fight the mounting tiredness. I slept through most of my visits today. Sorry peeps!

Day -1

This continued the trend from yesterday, lots of side effects from the chemo, and in addition I was experiencing severe cramping from being constipated for the last few days. Since bowel blockages can cause tears easily during chemo, they were giving me some drugs to try and wiggle things around, but the cumulative effects of the chemo and those drugs led to me blacking out in the bathroom and losing responsiveness in the middle of the night. I could hear them calling a code to get doctors up on to the floor, and yelling my name but I couldn’t reply. I was trapped in darkness. They were able to get me to come back, with no emergency interventions needed (Thank God) and they ran a ECG which showed some T-wave abnormalities which can be a side effect of the chemo. Once everything was stabilized and I wasn’t in immediate danger, they put an infections hold on my room until blood tests revealed no viral or bacterial signs of infection, which meant on day Zero, everyone would have to be gowned and gloved and I couldn’t leave my room. It was pretty disappointing.

Day Zero
Even though I was disappointed, I didn’t really have the energy to care. The morning of day zero I had put on a total of almost 5 pounds of fluid and I no longer had knuckles, or face definition. My hands looked like doctors gloves that had been blown up full size. My whole body felt like a balloon from the inside out and I was about to burst. It was wholly uncomfortable. Lots of people came to visit me Day Zero which was nice, but I was barely with it. When the actual infusion happened at 3:30, I was excited, but it was hard to show it. The actual transplant process itself was fairly anticlimactic in the sense that its really like receiving blood products. I started to get intense body shakes and shivers throughout the process and needed several warm blankets to keep my body from shaking off the bed. It felt like the cells were rushing through me like minors from head to toe and it made me feel even puffier than I already was. It immediately reminded me of a friends cottage we visited after prom, where at dusk if you jumped off the dock you and let yourself float stilly in the deep cool water, that all the minors would shimmer around you and touch your skin. It was creepy and surreal, and we would challenge each other to see how long we could handle the feeling for before getting super creeped out. I imagined my donors cells much like those minnows, spreading throughout my body, and finding their way to a new home. Towards bedtime the fluid retention was off the charts so they opted to put me on some medication to help that drain, which led to another sleepless night as I was up to go to the bathroom about 25 times. In between bathroom trips, My head and face was pounding and wriggling. When I closed my eyes it was like a fireworks light show, with a jukebox on full blast playing all kinds of crazy music non stop. The craziest dreams were happening, in which I was seriously injured or died at the end of all, like some twisted episode of South Park, where I was Kenny. I imagined that some of the dreams, light show, strange music was memories of my donor’s life and body and that my mind and body was trying desperately to integrate them. I spoke to them kindly and welcomed them to their new home.

Day +1 – +3
These days were mostly just sleeping, sleeping, sleeping. I was listening closely to my body and trying to honour it in any way I could. I had some intense cravings for certain foods that were pungent since my taste and smell had mostly gone. Stuff like egg salad, roasted red pepper tomato soup from Avanti and even deep friend pickles (definitely shouldn’t have let myself eat those, they killed my baby stomach). In between meals sucking on strong mints or peppermint gum really helped keep the taste at bay. I haven’t developed any apparent GVHD yet including no mouth sores, but I was told they should be just around the corner. Until then I’m hanging in there, resting, listening to my crazy donor cell jukebox and waiting to bust out of this place!

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