After waiting what has seemed like essentially forever, I’ve finally got some actual news. Decisions are being made, things are proceeding, and unfortunately, my days of wanton rare meat eating come to a temporary close.
Quick Aside – Just hit 12,000 views. Pretty Effing cool. Thanks to everyone out there that’s sharing my links, it is much appreciated. Back to the news!
The Expected News
As Dr. Roboz was saying last week, something was needing to happen soon. Well, it’s not going to be stem cell. Apparently, the cord matches I have are from an international bank that is taking a good amount of time to respond to the inquiries we need to fill. So, the official review of the cords will be at least another week. This is too long for me to go without receiving chemo, so that means, I get another round of high dac. That is, 5 days of high dose cytarabine, getting 2 doses on days 1, 3, and 5. It also means being hooked up to a pole for ~9 hours at a clip.
Oh, and peeing literal gallons. Oodles of urine. Wizzing up a storm.
I will be going to the bathroom a lot, is what I’m saying.
I’m getting the call some time today about when they’ll have a bed ready. I’m hoping that it won’t be ready until Thursday, just so I have some time to get my stuff together and ready, and go to a friend’s party/gathering and get some good group social fun times before going back to the “I am wary of groups of people I don’t know” mode of neutropenia. Although, I have tickets to see Bill Burr a week from Saturday, and come hell or high water, I’m going to see that man. So there’s that. Luckily, it will fall within the period of pre-fever neutropenia where I’m allowed to kind of just do whatever, and try to avoid getting sneezed on. Oh, and carry purell at all times.
The Kinda Bad but Maybe Not so bad But We Don’t Really Know Yet News
As alluded to above, the down side of starting chemo is that we’re doing it because the cord specialist, at the moment, is fairly ambivalent / “not psyched” about the cord matches. So, that’s actually kind of funny. When this whole shebang started, I was pretty terrified of the concept of a bone marrow transplant. I didn’t know what it entailed, I didn’t know what the odds or chances of it were, but I was pretty sure the whole thing just kind of sucked and I didn’t want to have to deal with it. If possible, I wanted to do just chemo.
As this process has progressed, I’ve grown much more comfortable with the transplant idea. I “get it”, as it were, as to why my initial doctors all seemed to be suggesting that transplant would be the best option. While it is certainly an incredibly risky process to undergo, it affords a much more tolerable level of relapse. If you make it past an initially pretty crappy few weeks/months, you more or less get to forget that you ever had leukemia. Not for real, obviously, but it’s not an invisible thing just kinda perched on your shoulder, waiting to say hi when you want it least.
Not that you’d ever really want leukemia. Having leukemia myself, I can’t say that any part of this has been convenient. Nor could I imagine a time where I’d say “Yeah, now would be a pretty ok time to get leukemia”. Ya know?
But that’s neither here nor there. As I was saying, at this point, I was actually starting to look forward to the transplant. I was thinking that unless my specialist (Dr. Barker, for those of you keeping track) didn’t like the cords, that I was going to go ahead and get the transplant done. The overall recovery time is actually shorter than chemo, and it would really get rid of the threat of leukemia, and I could just get back to life as normal.
Plus, winter is coming up, and my snowboard is sitting in my living, waiting. Eager for snow. My edges are sharp and my wax is fresh.
But it’s starting to shape up that I actually won’t really have a choice in the matter. If the cords are crappy, or they don’t match exactly how we want them to match, then my chances with just chemo are going to be close enough to the chances with the transplant that it’s not worth the extra risks that come along with the transplant.
Well, all this time I was hoping for some sort of sign to push towards chemo, and when I was finally coming to grips with the reality of the stem cell, and even leaning towards that direction, and I get the sign we were looking for. Only now, I kind of don’t want to do just the chemo anymore.
This also means that I may not have any potential donors out there. So all of you guys signing up for the registry – I may actually need your marrows after all. So I will keep rubbing my dad’s lucky charm, and hopefully continue to be in a metric ass ton of prayers (is it bad to use a bad word while referring to prayers?), and I won’t relapse. Because if I relapse, I need a transplant. And if I need a transplant and have no matches…well.
Things don’t end pretty.
I can’t end on that Morbid Note
Positive things! The pain in my leg has pretty much cleared up, as well as the residual stiffness that I was feeling. On Monday, I did a nice and easy 12.8 mile ride with my sister, helping her train for her TRIATHLON in April. How cool is that?
Oh, did I mention that the Leukemia & Lymphoma Society made me the (an? I’m not sure on how many they select per race, to be honest) honored hero of the race? That means I get to speak to a group of people, telling them my story, and hopefully giving them a little extra motivation to think about while they’re training. To say I am enthused would be an understatement.
And I’ll also get to live (suffer?) vicariously through my sister going through basically the same intensive training I was doing this past winter/spring while I was training for my own set of triathlons.
I know some of you might be thinking “this is good news? What the hell is wrong with this guy?”, but really, it is. I get to be active outdoors during one of my favorite times of year. Early fall, where the temperatures are just starting to fall, the leaves are just starting to turn, everything just smells awesome and crisp and cool, but you don’t need heavy jackets yet. Fall is just the best. Plus Halloween is in the fall, and while I don’t know if I’ll be able to go out and party like I normally do, I’ll still try to do some sort of actual costume, just because its fun.
Last year, I picked up a silk pajama suit to do a Halloween 5k dressed as Barney Stinson from the show How I Met Your Mother. It went over well with folks. Although, when I was first diagnosed, and my sister and my mom decided my apartment needed some “organizing”, my mom found the suit. She was…disturbed…is how I’ll put it. My “Oh, that’s my Barney suit” explanation didn’t exactly go over well either.
That’s all she wrote, folks. Be sure to stop by CyclingIllustrated.com today, as my post will be put up there, probably some time around 11 or 12 PM EST. That post will give you a little insight into why I ride, and I think I went a little bit more in depth on my crash.
Lastly, if you’re reading to this point, do me a favor. Do one thing today outside just for fun. Anything that you enjoy. Just something outside, and when you do it, be thankful that you’re free to do so, feel good enough to do so, and get to just be alive for a minute. If it’s not too much to ask, try to do it without worrying about all your day to day nonsense. Just be happy for a bit. Thanks.