Ugh I just wrote an entire blog post, and it didn’t save. Boo. Take 2 likely won’t be quite as good as the first I’m sure…
On Monday, I will meet with my new doctor; my transplant oncologist. I’m pretty nervous. She has the final say as to whether or not to proceed with the transplant; whether or not she thinks my tumor is new cancer, or whether she even thinks its worth it, considering how aggressively my cancer came back. I never really thought about the possibility of being denied the transplant before, and then I made a fatal error. I googled shit. Now I’m scared. Most people in my position stage IV, twice in a year, with an aggressive relapse, with organ involvement–wouldn’t be viable candidates according to webmd, and various other lymphoma sites. But then again, based on those sites, I should be dead right now. So I guess I’ll just have to see how it all plays out.
I’ve been wondering about other things too–like vaccines. I have to be re vaccinated post transplant with basically every vaccination you have as a toddler/child growing up, and all at one time. Basically it will be like a system re-boot for me, since I’ll be (hopefully) getting brand new blood. I wonder if there will be any lasting effects from getting them all at once? Plus, my disease is called recurrent nodular lymphocytic predominant Hodgkin’s lymphoma. Recurrent. I have heard of patients who receive upwards of 3 or even 4 transplants in their life time. Will that be the case for me? Would my insurance even cover that?! I know the biggest risk for the transplant is risk of infection. Am I at a greater risk without my spleen, since I require even more vaccinations?? And even more, how many brain cells will die off from all of the toxic chemo drugs I have to take? In the end, will I even be the same person I was?
I’ve also been thinking a lot about Mack. I know it’s selfish, especially considering how lucky we even are to have one healthy child, while there are plenty of other wonderful people who want one, and are unable to have one of their own. But last night, Mack was holding my hand. When I looked down, I had a huge lump in my throat because I realized just how big his hands have grown. It’s like this whole year and a half passed by, and Mack kept growing–only I missed it. It’s hard to think that we won’t have any more, and I’ll never see little hands grow bigger again. Not hard because we can only have one. Hard because I’ve missed out on so many “firsts” with the one we are lucky to have. ..if that makes sense at all. It makes me think of Kris, and our conversations about her youngest spending his whole life with her in treatment. And that kills me. I know ultimately TIME is the answer, and just having more time with him in general is the real goal here. But sometimes, it’s just really hard to live in the moment, which is something that I always preach to myself, because you realize how many moments you’ve missed.
Normally I put on a brave face, and just pretend like nothing is wrong with me, and I will myself not to think about any of this stuff. I know how hard it is on my family and friends, so staying upbeat is just something that I’ve always tried to do. (*Sometimes I feel like Queen Elsa from Frozen! BOOM!! That reference just happened, and it was totally appropriate!) But sometimes when it’s quiet enough…or when your three-year old wants to “snuggle” with you on the couch, just to “make sure you don’t leave to go back to the doctor”, it forces you to face things you normally don’t want to.
All-in-all, I guess it’s not such a bad hand I have been dealt. For one thing, I’m alive, which is pretty great. For another, I have the added bonus of looking at life very differently than most people. And even though it’s hard to live in the moment sometimes, it’s a lot better than worrying about things in life that ultimately don’t matter. I also get to crack jokes about death/illness/dying, thus making people feel extremely uncomfortable, which I find great. I mean “regular” people can’t do that, because karma would for sure bite them in the ass, right?!
*Please keep some fellow blog readers in your prayers. It is easy to forget how hard cancer can be on the caregivers. Thinking of you guys 🙂
“Dost thou love life? Then do not squander time, for that’s the stuff life is made of.”
― Benjamin Franklin