February 24, 2025

WHAT’S NEXT?

If you’ve ever watched the TV series, the West wing, those words will be familiar, spoken often by president Bartlett. It seems like a good question to ask now, as things are changing again. I actually know what’s next, and I’m frightened, freaking petrified, as a matter of fact. But let’s go back a ways.

A few weeks ago, I had a CT scan. The results really were mixed, some nodules had grown a little; some had stayed the same. There were new cysts in my liver. Things just weren’t clear. I had just started the new meds, Everolimus, and it was too soon to know if they were working. Dr. Z decided to have me get another scan in three weeks and then come right back in to see him. The results wouldn’t be in with all the measurements, but he could see the pictures, so that was the plan.

The Everolimus was mostly easier on my body. I didn’t have all the annoying side effects as on the previous drugs, other than fatigue. And in the middle of last week I developed terrible mouth sores. Things were so painful that I could hardly eat a thing. Everything I put in my mouth, other than milk, ensure, things like that, just burned. The fatigue was pretty strong, and I needed naps nearly every day. Sometimes those naps messed up my night sleeping schedule, but sometimes the naps didn’t mess it up. It was better than the Cabometyx though.

I had the CT scan on Friday, and I saw Dr. Z today. The news was not good. He’d warned me that the new meds were not as effective against cancer as the original, but I had still hoped. Well, I’d been on the meds seven weeks, and apparently, they passed by not as effective and were just plain not effective. My lung nodules have definitely grown. So, what is it now? Plan D? And that plan is immunotherapy. This is what I have feared all along.

In case anyone has forgotten this, I was born with an auto immune disease called juvenile rheumatoid arthritis, JRA. I had the worst kind you can get, because it affected every joint in my body, and it was systemic, meaning it could attack internal organs like kidneys, lungs, heart, and liver. It could also cause deafness and blindness. I got the blindness, and a lifetime of chronic pain and reduced range of motion, lost of dexterity and mobility and so forth. My immune system has attacked my body since I was born. Immunotherapy puts the immune system into overdrive, or hyper drive for any Star Wars fans. My immune system will be attacking the cancer, but it will also be attacking a lot of other things potentially, and maybe making my JRA become a problem like I haven’t known before.

The list of potential side effects of immunotherapy is one of the scariest things I have ever heard. Rosie read me the list today, and I’m sick with dread. Of course turning my arthritis up to high is one. colitis, nausea, headaches, weakness, possible trouble breathing, possible lung and heart infections, loss of appetite, and on and on it goes. Dr. Z said about 50 percent of his patients develop thyroid problems, though that can be treated with medicine.

So, what’s the plan now? They are going to be working with my insurance, medicare, so I’m hoping that will be paid. I will have another teaching appointment with Nurse Laura. Then I have to have a port put in my body. The immunotherapy is an infusion drug. No more little pills. The documents I got today even talk about negative reactions to the infusions and repeatedly say in I have this or that reaction call 911 immediately.

I’m scared, okay? I’m petrified, terrified. What if the arthritis gets really bad? I’ve fought my entire life to beat it, never to let it control me, always to be mobile, walking. Yes, I’ve lost motion and dexterity over my 67 years. I cried in 2009 when I could no longer put earrings in my ears. I can hardly reach the back of my head when washing my hair. When I get blood drawn, they can’t get it out of my elbows, because my arms don’t straighten enough anymore. If immunotherapy jacks up the JRA, what will happen to me?

That doesn’t even count all the other possible side effects, all of which I fear. The list is worse than with the more traditional chemo pills. So many terrible things can happen. Before anyone says let’s be positive, remember, I’ve had side effects, some damn serious ones, from both the other meds I’ve taken for this. Why should I expect to get off easy with this treatment?

In the doctor office today, tears came in to my eyes when he said definitely immunotherapy. He assures me it does wonders for cancer, but for today, my thoughts are all wrapped up in, at what cost. There isn’t really any other option for me at this point. It’s immunotherapy or stop treatment altogether.

After watching my dad die of cancer, and seeing what chemo did to him, I swore repeatedly that if I got cancer, I would not do treatment. It’s a whole different matter when you actually get diagnosed with cancer. Of course I’m going to go through treatment. What else? Sit back and wait to die? That’s not an option at all. But for today, and for however long I need it, I will let myself be worried and frightened of the next steps in this process. I don’t apologize for my fears. This is happening to me, after all.