"I think I'm afraid of being happy because whenever I get too happy, something bad always happens." -Charlie Brown

A hundred million years ago, Joe and I dressed up as Charlie Brown and Lucy from Peanuts for Halloween. I carried around a football all night, and every now and then we’d reenact the famous scene where Lucy holds the football, promising Charlie Brown that she won’t pull it away from him. No, no, no, THIS time, she’ll let him kick it. Then he runs, full of hope, toward the football, extends his foot, and flies through the air, falling to his back as Lucy pulls the football away from him. 

Lately, I feel a lot like Charlie Brown. 

I had my routine CT scan recently and the results were not what we were hoping for. After months of working, it would seem that the treatment I’m currently on is no longer proving to be effective, as I unfortunately have some new growth in the form of a new tumor near my left shoulder that I have named Vesuvius. The deal was, I stay on a treatment provided it is stabilizing the cancer that is already there. Once it starts growing or popping up in new areas? It’s time to switch. So, basically, that’s where we are now. 

I’ll be honest, I wasn’t incredibly surprised, which is partly why I didn’t share with many people that I even had an upcoming scan. I’d been having some additional pain, which, in my previous experience, has not led to anything good. This time, it included a new pain that radiated from my shoulder area, causing some arm weakness. I’d (somewhat naively) attributed it to potential leftover side effects from radiation, as radiation left my entire neck area a hot mess, but it turns out I was too hopeful again. As realistic as I’ve tried to be about my situation, it seems I’m never able to fully imagine the worst case scenario, which means it’s always a real kick in the ass when it happens. 

Vesuvius is located in an area where a bunch of nerves and veins and shit come together (science!), which is why it’s causing the pain and arm weakness, and it’s only going to get worse. Luckily, they’ve already shown my scans to the radiation oncologist, who thinks we can zap it with some targeted radiation. As much as I’m NOT looking forward to having radiation again (turns out I’m dreading it more than I even consciously realized, because when Joe called to make the appointment, I started full on SOBBING out of nowhere), if it’s not aimed straight at my mouth, I think I can handle it. I’ll meet with the radiation oncologist this week, so hopefully will have more details about what that’ll entail soon.  

At one point as we were getting the results, Joe asked my doctor how bad this was, something we usually dread asking but you know…you gotta ask it. She said it’s obviously not good. The whole goal of being on treatment forever is that it’s stabilizing the cancer. New growths are not what we’re trying to do, which is why Vesuvius is so unwelcome and why we’ll be looking into switching up treatment. Luckily, my doctor is like the Wonder Woman of head and neck cancer and already has some ideas, which will probably include some new combination of immunotherapy drugs. We have no idea how I’ll respond to any of them, but that’s been the case with everything since last April, when I found out the cancer had metastasized. I’m trying to hold on to the fact that it seems like, whatever treatment I’m on, it works for at least a little while and my body seems to tolerate it pretty well, so I’m hoping whatever I start on will have good results, at least until we can figure out what the next step might be. Because the cancer is not curable at this point, this is really the best we can hope for. 

Still, as hopeful as I want to be, it was a tough visit. This was the third time we’ve received news like this, the third time they’ve answered our tearful, “How bad is this?” with gentle “not greats,” before breaking down where we go from here and asking if we’d like to talk to a social worker or someone in palliative care (pro-tip: never do this on the day you receive the bad news because you have no idea what to ask and it’s too hard to talk about at that point). We’ve at least learned not to ask about prognosis in terms of time anymore, so I guess that’s good, because all that leads to is NIGHTMARE CITY. 

I couldn’t help asking (again, I’m gonna ask every single time) WHY my cancer has been such a raging dick. Why is it so aggressive? Why is it so resistant to treatment? Why do I read about so many people who’ve had the same cancer, the same treatment or treatments, and they’re just fine now. (Well, maybe not fine, but at least cancer-free.) Me? This is the third treatment that my cancer has outsmarted. 

The answer is still…we don’t know. They don’t know why this cancer pops up in people, young women specifically, with no risk factors. With this kind of cancer, I should be a 60-year-old man who smoked for his entire life. But my doctor said that with this cancer, for whatever reason, it would seem that the younger the patient, the more aggressive it is. That it almost always pops up out of nowhere and is difficult to get rid of. In her words, “When I see a young patient come into my office, I know I’m in for a tough battle.” 

Weirdly, her war language didn’t bother me. I may not particularly feel like I’m in a fight–if anything, I’m just providing the battlefield–I kind of like the idea of my doctor taking up arms to protect me against this Big Bad. She’s not using traditional weapons. Forget the guns and swords and grenades. She’s using her education, creativity, access to trials, new drugs, and BOOKS. You know I’m fully behind that. 

And I’m thankful that this treatment upheaval is at least happening after we got settled into our new place. Changing treatments and timelines and meeting new doctors is exhausting. If I do radiation again and it’s anything like last time, I’ll have to go in every day for a period of time. It’ll mean more tests and scans and probably things I haven’t even thought of because I blocked them out after last time.  

Because there’ll be more news to report, I’ll try to keep everyone updated here (since hey, that’s what this blog is for!) and on the appointments page. (You can also subscribe to blog updates here, if you’re so inclined.) 

I can’t promise that I’ll be providing every detail ahead of time. Sometimes it feels better to keep it to myself (and obviously Joe and our immediate families). I can’t begin to tell you how much energy it takes to share news like this with multiple people on an individual basis, to withstand all of their follow up questions but even worse, their reflected anxiety and worry on top of what I’m already feeling. So I may just be sharing things via the blog for a while. I hope no one is offended if they ask me something and I ignore the question, because sometimes even saying, “I don’t want to talk about it,” takes too much energy. I promise that I appreciate the interest and the care, and if I’m having an OK day, I might be fine answering questions all day long, but I doubt it. Lately, I’m exhausted almost all of the time, so I’m trying to be proactive about protecting my energy before it gets depleted. 

We’re doing OK, though, or as OK as anyone would be in this situation. I’ve been surprised, honestly, at how we’ve taken the news. Of course there has been a lot of crying and freaking out and couch-wallowing, and I’m sure there will be more. But I was surprised at how little there was of this before we just said, “Welp, here we go again,” and went about life as usual. Honestly, this IS life as usual.

The reality is, not much about the situation has changed since last April. I still have incurable cancer. I’m still always going to have cancer. It’s still going to kill me at some point. It’s trying to speed things up more than I’d like, which is just another thing that pisses me off. But we always knew this is how the road would go. We didn’t know exactly what it’d look like, but we knew it would be twisty and turvy and that we were just trying to stay ahead of it as much as possible. Thankfully, while our medical team has changed, they seem just as committed to trying everything they can to keep the cancer at bay. So, yeah. As much as this sucks, it would seem this is just…life. At least for now. 

And hey, if Charlie Brown can hold out hope that one day he’ll kick that football, I can hang onto hope that at least one more treatment will work.

Little, tiny babies. I want to wrap them in bubble wrap.