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If Beauty Is Pain, APL Is Gorgeous

3/15/20: Pain was so excruciating through the night that, if I saw a dog suffering to that extent, I would put it down. My bones scream at me and my joints feel unable to support my weight, even laying down. My ribs want to resist breathing in order not to move, as those are clearly bones too, and each one aches beyond aching. 

3/16/29: A tough night and morning gave way to a pain free afternoon. At first, I was certain I would need help giving myself the required daily bath, but by 2pm I was confident I could do it on my own... and I did.

I took morphine along with the chemo tonight and it helped prolong the peace until about two hours before I was allowed my next dose. Sweet Elizabeth, my night nurse and angel-of-mercy, brought me more, but I’m finding it really doesn’t hold a candle to this degree of hurt. She showed up the second I was able to take another dose and delivered it to me with a hot pack which worked surprisingly well to ease the intense ache in my left shoulder. I’m going to try to catch my breath and go to sleep. 

3/17/20: Differentiation Syndrome may be rearing its ugly head. My terrible bone pain could be the early warning sign. The doctors have decided to postpone all chemo therapy and increase the Hydrea in order to reverse the potential for problems. When my WBC drops below 10 (currently at 24.2) they will resume the treatment. The standard range for WBC is 3.7-11.1. When I was diagnosed, I was at 1.2, so 24.2 is a bit of an over correction. 

I took a shower by myself today, had an EKG that showed a slightly rapid heart rate, and had the bandage around my PICC Line changed. 

3/18/20: Chemo is on pause while my WBC drops (now at 25.2) and they switched me from narcotic pain medication to some kind of neuron inhibitors that seem to be working great. I had physical therapy in my room today because I am showing signs of “frozen shoulder,” and felt better immediately after doing some of the exercises. I lost a pound which is awesome because they keep warning me that gaining weight is a side effect of the treatment for this type of cancer. The hospital is on full blown lockdown now and they've officially stopped allowing ALL visitors because of COVID-19. 

-Nighttime update: I didn’t sleep a wink tonight. I was trying to be tough for all the women in developing nations, like those who get relegated to sheds because of fistulas. All my joints locked up and I became a twisted, writhing mess. I had no idea how many different kinds of pain there is! I finally asked for help and feel kind of mad at myself for not being stronger. It’s hard to trust my reality right now because, when the pain subsides, I wonder if it was ever really there at all. 

3/19/20: I’ve noticed some odd things like a stutter in my speech and twinkling stars my vision. I told the nurse, and shortly after, some sort of expert popped into my room. We talked for a while and, after assessing me, I was told I look good and we can just monitor it from here. I promised to let them know if it persists or if any new symptoms arise. 

Here's a summary of the latest via a text I wrote my best bud, Tea:

"I have more stuff flowing through my veins than I ever would have guessed the human body could absorb. And arsenic, no less! Morphine, oxycodone, prednisone, cytotoxic, someone else’s platelets, antivirals, antibiotics, anti-fungal medicine, neuron inhibitors, antacids, stool softeners... it’s cray cray. They put the chemo on hold for a couple of days because I am showing signs of differentiation syndrome, which is where my blood cells respond too quickly and basically over correct. The healthy range for white blood cells is 3-11. I came here with less than 1 and now have more than 25. It freaking hurts! I’m blown away, though, because cancer is so much different than I remember it with my dad. They have a medicinal answer to every problem so, while the pain can be really immense, there is another side to it. I spent the last two nights like WHOA, but pausing the chemo and taking whatever they’re giving me to drop the WBC back down has been such a relief. Looking back, I know I can survive anything! Everyone is really nice here, but they all have to wear masks around me because I'm immunocompromised and COVID-19, so I don’t actually know what they look like. Here they are saving my life and if I ever ran into them at the grocery store or something, I’d have no idea! No visitors are allowed in the hospital whatsoever. What else...? Umm... I’m doing physical therapy in my room because the treatment is causing something called a frozen shoulder, but I’m not worried about it because I enjoy stretching and won’t let it get too far. The only perk I was looking forward to in all this was losing weight, but nooooOoOOoOoo. The treatment causes weight gain! 😩 Oh, what a world! I eat like a kid here - PB&Js, applesauce, tater tots. It’s bizarre how far I’ve swung from the healthy food I normally eat at home, but I guess they really have to limit stuff to microwave dinners in order to ensure sanitation? I don’t have much of an appetite, but I eat because it’s like my only job. Very weird to be served hand over foot like this. If I need anything at all, I just push a button and some caring human rushes to my aid. The doctors told me today that 1 in 10 people die during the first week of treatment... and, grrrrl, I made it through! BOOM! Done did that! The next three weeks are pretty crucial, too, but they lead me to believe I’m through the thickest parts. Apparently, I happened upon the single type of Leukemia that is actually considered curable... 90-95% cure rate, so I’m just biding my time while the experts tweak and adjust my body’s innards. They offered me an opportunity to participate in an experimental program where they consult with an international expert on APL in Atlanta. I opted in and feel really good about it. I don’t even really understand why they call it experimental... seems to me that it’s basically just coaching. Icing on the cake because this hospital just so happens to be the local hub for Leukemia. So, I really feel I’m in excellent hands. They sanitize my room and change my bedding every single day and I’m getting good at giving myself sponge baths with a partially immobilized arm. That’s pretty much the nitty gritty for now..."


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