“The sun is a mass of incandescent gas, a gigantic nuclear furnace.” -TMBG

I’ve been working on getting our porch set up, so I have a nice place to sit outside when I don’t feel energetic enough to go for a walk. I’m grateful to have this outdoor space to enjoy as the weather starts getting nicer, to have a place to watch birds (and chipmunks and squirrels) and let the sun warm my face. I’m grateful for so many things, really, which feels weird given the recent news from my CT scan. 

I’ve honestly been so lucky to have so much support throughout all of this. So many people want to help and have helped. I know people want to do more. I know that they know we’re hurting and struggling and want to just fix it, because it’s what I would want if the situations were reversed. Unfortunately, there is no fixing it. The situation just sucks and nothing is going to make it better, only tolerable (and even that’s a tough ask most of the time). 

As angry and sad as I am most days, as much as I sometimes wonder why I’m even bothering with more treatment at this point, I don’t want anyone to think I’m unappreciative of their efforts to pull me out of that bad place. Though my life has been completely decimated over the past two years, I know I still have so much to be grateful for. I’m so grateful that when I post the worst possible news, so many of you reach out to make sure we’re OK. (We are, really. As OK as we can be.) I’m grateful that when I try to communicate what I need, everyone does their best to accommodate. 

Though, I do think I may have accidentally stepped on some feelings in my last post when I asked people not to be offended if I wasn’t able to answer all of their questions. I’m worried that they took that as, “oh no, I did a bad,” but that wasn’t my intention at all. No one has done anything wrong, I was just giving myself an out for the days I feel too exhausted to talk about things. To put it another way: this is already exhausting to live through. Every appointment I go to depletes me in some way and the past few weeks have been A LOT. A lot of new information to both receive and communicate, a lot of feelings, a lot of decisions to make, and unfortunately, a lot more pain that I’d like to deal with. To have to communicate it, over and over to individual people, feels like I’m reliving it. And no thank you to that. Once is more than enough. 

The other thing is, sometimes it feels like because I have shared so much, it makes it seem like I’m OK sharing anything and everything regarding my health, like my medical chart is available for people to just pick up and flip through. It’s a weird thing about this disease. It makes people ask questions they probably wouldn’t ask others. Like if you told me you went to the OBGYN, I wouldn’t be like, “Oh, cool, how was your pap smear?” If you wanna tell me? More power to you, but I’m not gonna ask. So when people ask me things I feel like are slightly too personal? It throws me off. Aside from this blog, I’m a pretty private person. There’s a line drawn that only I can see, that sometimes moves, between what I’m willing to share and what I’m not. 

All that being said, I did want to share an update for where things stand as of right now. I haven’t shared much until now because, though things might seem slow-moving to anyone outside of the Joe-Jennie bubble, things are actually moving really quickly, and it’s a lot, and it’s overwhelming, and it all makes me want to hide under the covers from anything and everything. 

We’ve now met with my new radiation oncologist, who is recommending something he calls a “quad shot” for treatment of the new tumor. This will entail a much lower dose of radiation than I received last time, and will only be four doses: two one day, and two the next day. The doctor has also offered to do the same thing to the areas of tumor growth in my mouth, but I haven’t decided if I want to do that yet or rely completely on whatever new combination of chemo/immunotherapy I might start next. To be honest, the thought of getting more radiation to my mouth makes me feel pretty panicky. It’s not something I ever thought I’d have to do again, and I wasn’t even sure I was able to have more. But, again, this would be a much lower dose of radiation than before, and obviously it’s fewer sessions than the 30 I had the first time. 

Meanwhile! I’ve started the process for a new clinical trial, with another plan on the back burner if this clinical trial doesn’t work out. I can’t start anything until the radiation is complete, which will happen next week. I had my radiation planning session a few days ago, which is the dress rehearsal for the real thing. They made me a new mask (even though they’ll be shooting the radiation near my shoulder/collarbone, the mask will hold me in place so everything goes where it’s supposed to), which is not the most pleasant way to spend an afternoon but it could be (and has been!) much worse. Basically, you lay down on the table and they pop this piece of plastic material in a warmer to make it pliable. Once it’s warm enough, they lay it over your face and chest, where it kind of just…melts and molds itself to you. (There are holes in it, so you can still breathe.) It’s not altogether unpleasant, as the room was freezing so it felt nice to have something warm draped over my body, but it then has to stay on for ten minutes or so until it hardens. It would be very easy, in this position, to have a panic attack. You’re basically bolted to a table lying down, with a hard bit of plastic holding you down, for a not-insignificant period of time. But if you close your eyes and just imagine you’re at a spa? I mean, it still sucks but I successfully held off panicky feelings. 

Though it feels like I’m again spending most of the time either at the doctor or talking to a medical professional of some kind, I’m still trying to distract myself with things I enjoy. Yesterday I swept the porch and filled the bird feeders, another gift from someone trying to pull me out of my terrible headspace. I repotted a plant my mom got me, one I’m going to try very hard not to kill (but I’m really good at killing plants). 

I pulled out our questionable-quality camp chairs since we haven’t gotten any porch furniture yet and sat, closing my eyes and waiting for the sun to slip from behind a cloud to warm my face, trying to ID the bird sounds around me. Just sitting there, I heard: robins, starlings, a mourning dove, cardinals, house finches, and a lone goose honking at some perceived slight. 

The sun eventually went behind a wall of clouds, allowing me to open my eyes and try to spy the chipmunk who lives under our porch. I’d left him a little peanut as a gift, which I know I shouldn’t do but I decided it was OK because I have incurable cancer and can’t eat comfort food anymore, so I have to replace it with something. LET ME HAVE THIS. 

So far, the chipmunk won’t come out if I’m on the porch. I’m not surprised. I’m secretly pleased, as it means he still has a healthy fear of humans. He comes out often enough while I’m inside. So how can I feel anything but gratitude to still be able to experience these moments? All I can hope for at this point is that my next treatments allow me more of them.