Almost There, Sort of

Tomorrow, Wednesday, November 23 is my last radiation session!

I went back and forth over what punctuation to use, an exclamation mark or a period. See, it’s the end of radiation for now, but we won’t know for about six months if it actually worked. If it didn’t, well, I’m not sure what comes next.

Also, the end of radiation isn’t the end of cancer treatment. It’s awesome that it’s the end of driving to and from Baltimore every weekday. It’s awesome that my side effects shouldn’t get significantly worse after tomorrow. But, it’s not the end.

I still have a follow up with my main oncologist in mid December. She may or may not request a CT scan at that point in time to see if there is any immediate effect. She will likely have me start my immunotherapy drugs at that point. When those were first described to me, it was one of those science fiction, “we live in the future” sort of moments. Essentially the chemicals in the immunotherapy drugs target certain receptors on the type of cancer cells I have. Once the chemicals have targeted those receptors, they bond to them and essentially make it impossible for the cancer cells to reproduce. So, it’s sort of like dropping an infertility bomb so that any cancer cells in my body are unable to reproduce and form tumors that would kill me.

Of course, they’re still kind of new and cancer treatment is never a 100% sure thing. And they have side effects. There’s a good chance they’ll cause serious pain in my small joints. You know, like the small joints I’m using in my fingers to type this post and do my work.

There’s a plan for that though! See, there are three versions of this drug. We’ll call them Alpha, Beta, and Gamma. A lot of people have the joint pain as a reaction to one of the drugs, but there’s no way to predict which drug will cause the side effect for which patients. The plan is that I’ll start on Alpha (or whichever one is currently cheapest and therefore preferred by my insurance company). I’ll take Alpha for two weeks. Hopefully Alpha won’t cause side effects and I’ll stay on Alpha for six months. However, if Alpha causes “unbearable” side effects that I “cannot tolerate” for two weeks, then I’ll switch to Beta. If Beta causes unbearable problems, I’ll try Gamma. I was assured back in the summer that most patients are compatible (meaning no unbearable side effects) with at least one of the three drugs. So, worst case scenario, I’ll have a month of excruciating small joint pain that will make it nearly impossible for me to type.

However, there’s even more fun! Our for profit health insurance system which I’m sure is celebrating the hell out of the electoral college results, means that a lot of insurance companies will try to fight a patient moving from Alpha to Beta or Gamma because the immediate cost to the insurance company matters more than patients’ quality of life and ability to contribute to society. My oncologist warned me about this. Thankfully, my oncologist and the rest of the Johns Hopkins staff have been completely kickass with my insurance company in the past. So, while it might mean a delay in treatment, I’m confident that my team will prevail in any fight against my insurance company. You do not mess with my oncologist.

In six months, I’ll get a CT scan and have a follow up with my radiation oncologist. That’s because radiation works slowly. There’s a good chance that if they did a CT scan a week from now, it wouldn’t show any change from before I started radiation. That’s…unsettling to put it mildly. With chemo I waited less than a month before my first clean scan.

Of course, one clean scan doesn’t really mean anything. I mean I had a clean one-month scan. Then at six months I had a tumor that turned out to be the size of a clementine. Oh my darling, oh my darling, oh my darling clemtumor.

clementine

Sorry about that, got distracted for a minute.

There’s also that. While I’ve been focused on making it to the end of radiation I haven’t been focused on the holidays and what they’ll be like without my dad. Kind of shitty, as my sister said, and not much we can do about that. But even starting to think about the holidays is like poking a barely stable dam holding back a flood of pain.

So, I finish radiation tomorrow. Then I get to start slowly recovering. Apparently I might not get back to normal energy for six months, I wanted to scream when I was told that. I also barely held it together when, after I asked about reintroducing dairy products to my diet, I was told “well, those aren’t very good for you.” I think my voice was almost steady when, instead of cursing, I said “You don’t understand, queso dip and milkshakes are my comfort food. They’re how I cope with life.” I closed my mouth and didn’t include “which is full of pain and struggle because I’m in the darkest timeline and my dad isn’t here to help me understand or fix things” after “life.” I did think it pretty hard though. The nurse then suggested adding them back slowly.

When I finish radiation, I start recovery and I start having less of a reason to not think about the holidays. Hence not knowing if I should use a period or an exclamation mark on my opening sentence.

Why did I choose the exclamation mark? Because it is something to celebrate. And even in the darkest timeline, it’s important to celebrate the good and joyful events, whether big or small. I won’t know if the radiation worked for six more months. I won’t be immediately back to normal. But that’s the future. I can’t control the future. What I can do is celebrate in the moments and work hard when needed. I can find a way to balance fighting bigotry and finding moments of joy.

Speaking of fighting bigotry (which we all should agree on, btw). Have you called your senators and reps to ask them to denounce Stephen Bannon and Jeff Sessions because bigots and racists should not be in the administration? No matter who you voted for, if you consider yourself my friend I expect that you consider yourself opposed to racism and therefore it is your duty to speak out against bigots and take action. Those links above will help you find the phone numbers. If you need a script, here’s one my friend Annie used:
“Hi, my name is [name] and I’m a constituent in [city]. I’m calling to ask the Representative/Senator to oppose the appointment of Stephen Bannon to Chief Strategist, due to his ties to white supremacist groups. Our country deserves better than to fill our White House staff with people who espouse hate. [I’d also like to ask the Senator to push hard to get President Obama’s Supreme Court nominee confirmed before the new administration takes over.] Will you please pass that along?”

It’s short, simple, and something that we all should agree on regardless of our party affiliations. Look, if the exhausted cancer girl who gets anxious on phone calls can find the spoons to stand up for people, so can you. I’ll also be making calls about the ACA and more since, I kind of like living. I also like my best friend living. I like a lot of people living and being able to access medical care. Living — it’s not just for the rich!

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