Drugs taken today: Fludarabine and Busulfan IV’s, Ursodial, Allopurinol, Dexamethasone, Ondansetron, Panatoprazole Sodium, Leviteracetum, Cipofloxacin, Gravol.
Today started off hella early. They do bloodwork on the transplant floor at 6am, which at first made me wanna freaking gag since mornings are not my thing (I’m a freaking musician and lifelong side job bartender! Mornings only happen when I’m still awake from the night before usually, or on radio tours which also make me wanna gag (obviously not the visits themselves, I love those, but the getting up early and also singing that early haha)
I guess the nice thing about having the central line is that I don’t have to do too much when they come in, I just unzip or unbutton my top a bit and let them have at it. They check your vitals multiple times a day, and I love watching the nurses faces first thing in the morning when they check my blood pressure. I have very low blood pressure upon waking, just like my mom so it sets off the machine alarm, and the nurses always panic and turn to me wide eyed with a “Are you feeling OK? Roll over, we have to try again”. Don’t judge me, I’ve gotta get my kicks in this place somehow ?
I was hoping I could fall back asleep but I was super anxious about starting chemo so I just relaxed in bed and listened to some meditations and affirmations until breakfast. I was worried that I would be throwing up and pooping my pants by the end of the day, but I really lucked out! Both rounds went really well, and the dexamethosone which is a steroid made me super energetic, so I really wanted to bust out for a walk when my parents came to visit. We went for a lovely walk in the sunshine, and I was so grateful 🙂
When we got back I was hella nauseous, so they gave me some gravol and I layed down for a while after my parents left until Bill came to visit. I was able to eat half of breakfast and lunch, I skipped dinner, but once the gravol kicked in and Bill showed up I was super hungry because of the steroids. Luckily he brought me some of my sisters brownies, and because the rule on the ward is that any food that enters my room cannot exit my room… I ate them all! There was only four, don’t judge me. Actually even if there was ten, I can still keep food down for now, and I didn’t want to waste them…What else is a girl to do? ??♀️ I was still hungry so Bill ordered me some Veggies and rice from basil box and it was wonderful. We cuddled up in my bed and watched the leafs playoff game. It was nice to see him.
Because the chemo is toxic, it can irritate your skin when you sweat, so I have to shower three times a day (once with surgical soap) to remove all bacteria and chemo residue from my skin. They’re really organized and friendly on the ward so they remind you to shower, eat, walk, and check up on you frequently to see if any new side effects are popping up or if you need any extra drugs or anything. I so far am really relieved at how smoothly this ward runs, how nice everyone is and how positive my doctors have been. My CML doctor (Dr. Lipton) came to visit me today and said how relieved he was that we decided to move ahead with the transplant now instead of trying to make the TKI’s work. Having your transplant for CML while still in the chronic phase is the safest approach and has the best outcomes, it’s just a hard decision to make because you still feel relatively fine, and you kind of have to choose to walk through hell and back while you’re still strong enough, to get back to feeling fine, but with no remaining cancer. He was careful to remind me that most issues with transplants happen when patients don’t communicate properly or quickly with staff, because side effects, particularly GVHD needs to be treated immediately, and that if any part of me felt ‘annoying’, or prideful, and wanted to ‘fight through side effects or strange or new feelings, to just not. Suck it up, tell someone, right away, even if it seems innocuous.
For me the coolest thing about today was my bloodwork. They post it every day on your wall in your room so you can follow the numbers, and this morning when they did my blood work before my chemo, the results didn’t come back until the afternoon once my chemo was done. As she wrote them on the wall, I thought to myself, Holy Shit.
My counts have been relatively stable and holding at the just above acceptable safety level for nearly 5 months (Neuts around .8, Platelets around 50, Hemoglobin around 115) Even on Tuesday and Thursday when I had my Hickman in, they were still stable and almost identical to the counts above. But just one day later on Friday morning? Nope. Nosedive. Free-fall. (Neuts .6, Platelets 35, Hemoglobin 92) It was like my body was so connected to my mind, it finally knew it was time for my transplant, and it was time to throw in the towel and stop working so hard to make my blood and just rest so my body could save all it’s energy for handling the chemo, transplant and healing. I think most people would be worried or surprised to see that but it felt like a good sign to me- that all the work I had been doing to connect my body and mind and drive my body towards a positive outcome had worked, and now my body was doing the work to make that happen. They’re definitely a bit low, and they said if my hemoglobin dipped much more tomorrow I’d be having a blood transfusion but that’s OK! Less work for my body.
I’m going to bed tonight super grateful for one more day on this earth, super hopeful for many more ahead, and just feeling really confident and strong about the journey ahead of me. I know that it’s going to be very hard, but I know that I will make it to the other side, and I look forward to living a second, kick-ass life!
Much love to you all <3