THE FOUR D’S

May 5, 2025

So, what are the four D’s? They are my emotions the last week or so and early this morning. Discouraged, Disheartened, Despondent, Despairing. Yes, that’s how I’ve been feeling. I give myself permission to feel these things during this time. I had a CT scan last week and met with Dr. Z this morning. more about that in a minute. First a little chat about the wonders of immunotherapy for a person with an auto immune disease.

My life, particularly since the second immunotherapy infusion, has been a nightmare. The arthritis is out of control. My hands are in such bad shape, that I can hardly do the simplest things these days. I wake up and my hands, fingers, wrists, are practically frozen, not to mention the pain. I spend the days constantly flexing my fingers and wrists, and my left shoulder. It hardly does any good. A month ago, I could squeeze both hands into a fist. Now, no way. My fingers hardly bend. In the morning I wrap my hands up in a heating pad, and that helps a little.

I’m a leftie, proudly leftie, and now I’m working on doing things right handed. I brush my teeth right handed now. I can hardly hold a fork or spoon, and my hand often shakes, with me supporting it with the other hand. The other day I was trying to open a package, and I couldn’t safely use a knife to open it. Yes, people, I’ve been using knives safely all my life, until now. I couldn’t open a can of soup yesterday, a can with a pull top. And it hurts so much to type right now!

I’ve been so afraid that I would end up losing most of my dexterity in my hands. The hands I use to help me stand from a chair. The hands I use to hold my guide dog’s leash and harness handle. The hands I brush my hair or teeth with. The hands I use to open cans of soup, or hold and pour from a gallon jug of milk. To quote Richard Dreyfuss in the movie the GOODBYE GIRL, “I am freaking petrified.”

That’s where things were when I stepped into Dr. Z;s office this morning. The scan results had come in just before Rosie and I left my house for the appointment, so I already knew the news wasn’t good. When Dr. Z walked in, those were his first words after hello. “the news isn’t good.” The largest lung nodule had doubled in size since the February scan. It is now 5.2 CM which converts to over two inches. The nodules have *never* grown so fast in the years I’ve been dealing with this cancer. I swear the immunotherapy super charged the arthritis and the cancer too! Dr. Z said no more immunotherapy, and those were the exact words I wanted to hear.

We have a new plan. We’re going to try Cabometyx again, but we’re going to do it differently. We’re going to start with the lowest dose, 20MG, and if my body can handle that, we’ll increase the dosage over time. The foot sores were the worst, though there were plenty of other side effects. The hope is that increasing the dosage slowly might make me tolerate it more. The Cabometyx is the only treatment we’ve done where the nodules actually started to shrink, so I really want this to work.

The doctor is also giving me a two week prescription of steroids to try to knock back this arthritis flare up. I’m praying this will work.

I’m not going to try closing with some positive feelings. I’m worried and scared. I’m in so much pain from the arthritis. If this plan doesn’t work, I don’t know what we can do next. Dr. Z isn’t a quitter, and I’m not a quitter either. But right now, my world feels bleak to me.