What a weird past month this has turned out to be.
I knew that I was going to start a new chemo. I knew that this new chemo would be an oral medication. I knew that it would be a Phase 2 trial, and I knew that so far the medicine has been pretty well tolerated in patients. I knew that I am not most patients, but I knew that I still stood a good chance of not having any complications from this medicine.
I know nothing.
I started the chemo, I took it orally, and at first I was okay. Sure, the "euphoria" side effect was there - not so much "euphoria" as just a general feeling of being completely out of it. But that was supposed to go away. In fact, it was only supposed to last for a few hours after I took the medicine. It might happen every time I took the medicine, at least for the first week, but that's still only a couple of hours a week. I could handle that.
A few hours turned into a few days. A few days turned into the entire week. Finally the week was over and I no longer had to take the pills. I would have at least 2 weeks free. But immediately after my head cleared, I developed mouth sores. Soon I was in so much pain I couldn't open my mouth, let alone eat or even drink anything. I went an entire day without getting anything into my mouth. The next day I choked down some soup while crying. The next day I got Percocet, which sent me right back into a drug-induced fog.
Eventually the sores all cleared up. Just in time for my blood counts to drop. I then spent the next week almost entirely in the hospital, getting platelet and blood transfusions. I needed more platelet transfusions than blood transfusions, which is a shame because I'm "allergic" to platelets. Years ago, during one of my very first platelet transfusions, I had an allergic reaction while receiving the yellow liquid. My face turned bright red and it burned and itched like crazy. The nurses informed me that this is not an uncommon reaction; it was called, fittingly, "Red Man's Syndrome". The nurses very quickly administered Benadryl via IV and the heat and itch were quelled. But, so was I; Benadryl puts me to sleep faster than any other medicine I've ever taken except general anesthesia. Morphine and codeine just can't compete with IV Benadryl - it's like a thousand pounds of pressure are pushing down on my eyelids and I can do nothing but let them drop. I can feel it enter my veins and then travel through my body. It's insane. Each part of me grows heavy and weak as the medicine runs through; from my hand through my arm down my torso running through my legs to my toes and then it goes back up to my neck to my head and then I droop. I am absolutely helpless.
Every time I am about to receive platelets now, I first receive my pre-medication of Tylenol and Benadryl as a precaution against Red Man's Syndrome. Every time I am about to receive platelets I make myself comfortable because I know that I'll be asleep for the entire transfusion.
What's sad is the platelet transfusions are extremely short. They only take 15-30 minutes to transfuse. It only takes 30 seconds for Benadryl to knock me out. I will be knocked out for the entire rest of the day. A half-hour transfusion means I am doomed to sleep for the entire day.
Blood transfusions are different. I'm not allergic to them. I don't need pre-meds. But, they're much longer than platelet transfusions. They can take 2 hours to transfuse, and it takes at least another hour beforehand for the lab to screen the blood and make sure it matches. Usually we'll be there in the hospital for at least 4 hours for a blood transfusion. They wipe me out in another way; it's just an exhausting process. I'm an impossible stick for IVs, so I have to wait for the IV team to come. There's one IV team for the entire children's hospital, so sometimes it can take a long time for them to come. Then even they can't always get the IV in me with one stick. My arms are always black and blue. Then I just wait for the blood to be ready and wait for it to transfuse. Afterwards, I'll go home and sleep.
If I had known how much this chemo was going to take out of me, I don't know if I would have signed up for more college classes, or maybe I just would have signed up for one or two, not four. It's hard to make up so much work at once, and I'm still struggling. I like the classes though, and I especially like having something to do when I am feeling well, but in the meantime I just have to do what I can.