Ok, so we’ve gone over the chemo. I think I forgot to mention that the thiotepa regime that I got has also wildly discolored my skin, and given me all kinds of weird marks everywhere. So that’s fun.
My doctor said it should go away, but it’ll likely take several months for the dead skin to slough off to have my normal pastey white / olive skin. Good thing we’re headed into winter, I guess. But if the stuff on my hips doesn’t go away…I may never wear swim trunks again. Oh, cool guys, we’re going waterskiing? <Shows up in Wetsuit already>. Hey, I do already own one for the planned NYC triathlon.
Anyway, after the chemo was the radiation, which we talked about, both the total body irradiation, and the BALLTACULAR radiation. You’ll be happy to note that for doses 3 and 4, they were kind enough to provide me with essentially a loin cloth to cover the jumblies while people stood and chatted.
But so yeah. We’ve made it through the “negative” days of my transplant calender. They are literally negative days. As in, they don’t count when saying what day I’ll be getting out of here. So.
The big day.
Was…pretty much a blur. They pumped me so full of ativan, benedryll, and zofran that I’m pretty sure I slept the entire day. Kind of disappointing, to be honest, but then again, I knew it was essentially a blood transfusion.
Day 1, they came to my room with like 30 people. They have the tiniest syringe, filled with my dad’s haplo boost. That injection also took two seconds. Whaaaat?
Now, I apologize. I really meant to blog this all earlier, but after those days, everything is a blur of vomit, diarrhea, and nausea.
Seriously, I lost track of the days. I would be feeling fine, and then all of a sudden, BOOM, I’d be vomiting and shaking.
The first time Dr. Barker came to visit me (which I’m not sure if it was before or after the transplant, to be honest), we were talking, and I was feeling fine, and then I had to vomit into a bucket in front of her. She was great about it. She handed the bucket to me, ran and grabbed another bucket, got a cloth, all before my family even had time to register what happened. And believe me – my family is FAST. It’s just one of those times you see someone who knows her shit just take charge, even in something as simple as a patient vomiting.
A day or two later, Dr. Barker and Dr Roboz(!) both showed up in my room. I honestly thought that was the nicest thing any doctor has ever done for me. I love Dr. Roboz.
Roboz and Barker discussed what was going on, Roboz told me I was doing great, to hang in there, and that she’d be seeing me soon.
They seriously are the best. It’s more than just knowledge. It’s more than just knowledge. It’s just genuine care for another human. They both care for their patients, and it makes me feel so lucky that I got to have these 2 amazing doctors on my side.
Anyway, the rest of week 1 is pretty much a blur to me. As mentioned on facebook, I found out that it is indeed possible to simultaneously shit, piss, and vomit. Let me tell you that it is not pleasant. Not even a little bit.
But the days crawled by. Next up: Fevertown. Expect another post tomorrow or Wednesday. Thanks for reading.
You are truly one strong soldier – good to see your up to writing again. As the song goes -no body says it better! Thinking of you – these are the hard days – hope they past quickly for you and don’t fight sleeping. Feel better – when you do so do we. Love you Aunt Marge and Uncle Doug
I am amazed that you are able to write with such wit at this time. When was Day 0? What day are you at now? When are they going to let you go? It sounds like everything is going OK (for a transplant). Oh and by the way, thanks for answering my rather blunt question. I admire the way you respond to every comment and I like your responses. So no quiescent leukemic cells hiding the testes. Why do they hang out there? How did people find out that this is where they might hide?
“hiding IN the testes”
Sounds like a Terrible Trifecta…all three simultaneously!! Awful! ay better days be on the way!!!
Make that “ay” a “may”, eh?
OMG! Write a book already and it will be a best seller…start working on the title…I can’t wait to say “I told you, you would write a best selling book”
I love you. I love you. I love you. You are strong. You are my hero. You are a lucky Lanza which means something really fantastic will come of this shit!!!
Hey 🙂 good to hear from you again.
Sorry you’ve had a hard run of it, but hopefully the worst is over!! I’ve been saying lots of prayers for yah, and I know you’ve got a lot of support..
Hope you feel better soon, can’t wait to hear more. Take care.
Trying to write more, but some days, it seems I only have to time to run to the bathroom and bed back forth.
that’s okay.. do what you gotta do! not like you have much choice when nature calls, tho 😛 lol.. just take care of yourself.. and know I’m rootin for yah!
I recently learned the reality of that trifecta! I think I left my body for the shock and awe of it all.
It was certainly an…experience. I’m sorry that you also had to learn the lessons I learned about transplant, but I hope yours went a bit more smoothly than mine did.