Right, so, I mentioned scary, heavy topics to discuss. Well, time to discuss them. But first, for those of you reading this from the East coast, I hope that everybody is safe. So far, I’ve dropped power for about 10 minutes, and lost internet for another 20 minutes or so. All told, I’m getting off light for now. Let’s hope that continues, and for those of you not getting off so lucky, I hope things get better for you soon.
Disclaimer: There may be some talk of…graphic reproductive concerns…that you may not want to read about. I’ll drop another warning. But if you definitely don’t want to know about the deal of some stuff going on below the belt…now’s the time to bail. Or, skim, and be wary of the second warning.
Well, on Friday, I got the schedule for the transplant procedure. Wednesday, assuming the Snowpacalypse Frankenstorm Rainmageddon doesn’t wash Manhattan away, I check in bright and early at 8:00 am. I get blood work done. I assume I find my private room. Next up, I get put “under”, but not really under, for the “surgery”, but not really a surgery, to have my Hiccman port placed. A hiccman is similar to a PICC, but I think its more permanent, it uses larger lines, and I think there’s less chance of infection. Plus, there will be 3 lines, instead of 2, so they can do more things simultaneously.
I’m told I won’t remember anything. I’m told I’m given enough stuff to be asleep for the procedure. But…they also say that if something happens, I’ll be given something to forget.
Which, if you think about, is kind of frightening. Like…sure, I guess, in the grand scheme of things, the end result is the same. But in that moment, when you’re panicking and afraid and worried…the fact that you won’t remember it, is kind of a small comfort.
But again, I guess it’s not really worth worrying about. It’s not like I’m going in to major heart surgery, and I’m worried of waking up with my chest wide open. It’s just another small concern nagging at the corners of my brain. Let’s move on, shall we?
Thursday starts the chemo. They gave me the names of the drugs, but for now, I’m still pretending like I don’t know. If I let it sink in, I’ll spend a few hours googling the crap out of them, and I won’t get to enjoy the freedom I have left. The chemo regimen hasn’t been explained to me yet. For now, I’m going to assume 24 hour drips of the various drugs. This way, if its anything less than that, I’ll be relieved. And if is, well, I’ve dealt with that already, and I’ll deal with it again.
During the first few days, we’ll have another bit to discuss that I’ll get in to later. It has to do with the aforementioned reproductive thoughts. We’ll get back to that.
On the last few days of chemo, I go in for total body irradiation. It’s to ensure that the last bits of leukemia are eradicated, and that the last of my bone marrow is also suppressed completely (if not eliminated). The process is not altogether terrible, nor is it particularly fun. You stand in a room, supported by a big frame with a bike seat (if you need a break), and they send radiation at both sides of your body, 10 to 15 minutes each. I get two doses. I’m told that at the levels of dosage I get, and the number of treatments, I will have a minimum of side effects. For the most part, nausea. Since I’ll be on a 24/7 drip of zofran for the chemo, that’ll be mostly taken care of. Lymphoma patients get a whole lot more radiation than I’ll get. So…hopefully not that big of a deal.
After that fun week, I’ll get a transfusion containing the two baby chord blood units that will fight it out to see which will emerge as the dominant bone marrow. The next day, I get the haplo boost containing my father’s stem cells.
And then, we wait. Cross our fingers that I don’t develop an infection. Sit in a room, where visitors wear gloves and masks. Catch up on some shows and books I’ve been putting off. Play board games.
Eventually, one of the cord units engrafts, and my numbers recover. Then I go home, and need observation for a minimum of a month, and more likely 2 months, of having to be with someone 24 hours of the day.
That means moving back into my room at my parents house. At twenty seven. Oh well, it’s not like I’ve done everything in my power to maintain a private life. Well. Until the leukemia. And this whole blog. I guess it doesn’t matter much, it is what it is anyways.
Disclaimer: Skip ahead if you’re uncomfortable reading below the belt talk. Here’s the last warning.
So. In the first few days of the chemo, Dr. Barker has decided to go ahead with what’s called a “testicular boost” of radiation. I’m told I’ll be on a table, balls akimbo, with a pointed dose of radiation at the jewels. Testicles are apparently a potential harbor site for left over leukemia cells. So, we shoot additional radiation at them to ensure all the leukemia is gone.
This is, shall we say, a shot to the nuts. Ahem.
So, if there was any chance or hope of me making it through this without being sterile, there it goes. I’ve accepted that as fact pretty much since the beginning…but still, the reality of it still kind of blows. Good thing my sister brought sperm to be frozen. Which is still weird to say.
But, additionally, they mentioned that it could potentially affect my testosterone level, which could be fixed by hormone replacement therapy. Which I’m pretty sure is life long, but I’ll clarify that if it turns out I need it.
So, this just keeps getting better, huh.
Again, it is what it is. And what it is sucks. But. C’est la vie.
End of Disclaimer.
So that’s it. That’s my life, starting Wednesday. I’ll be trying to enjoy the last day of freedom I’ll have for a few months. If you’re in the city, feel free to come by. Text me and I’ll give you the details on how to visit. Be forewarned – if you visit during the month long hospital stay, you can’t be even slightly sick, and you’ll have to wear gloves and masks and a smock thing.
If you’re coming from out of town, or making a special trip, you might want to wait until I’m back at my parent’s house. I’ll definitely be stir crazy at that point, and I will most likely be a better host. I think my parents’ house qualifies as slightly nicer than a hospital room, private or not.
Now, somebody tell Sandy that I have shit to do and she better calm down before Wednesday.
Just started getting emails back on line. Reading your blog just wanted you to know that is really scary reading but somehow by you writing the facts I can only feel that your story will be told so that others will be encouraged when they see how a positive attitude helps to deal with any circumstances that come your way. In the end I want to read and he lived happily ever after. Love you xxx
Tony and Anthony, best of luck to the NIH of you. I hope to see you soon.
I meant “both” not NIH 🙂