February 10th, 2025. My first infusion. It's been a crazy year. I stopped writing because my fingers hurt too bad to type. I considered talk-to-text for a minute but it felt so awkward. They make the captain's log sound so smooth and easy in Star Trek.
The pain reached a point where most of the time I just sat on the love seat, elbows on my knees, hands in a prayer position with fingers interlaced, waiting. Just waiting. So. Much. Waiting. I also started losing control, emotionally. I had trouble controlling my temper, my reactions... many days I was a mess. These are the times that will test a caregiver, really push them to their limits. Lauren was taking care of a 3 year old and two 6 year olds. That had the biggest impact on us.
By the end of May I was getting more and more unhinged. I had a CT Scan on May 30th that showed my port tube out of place. It had nestled up to my jugular like they were in love. When I showed up for my infusion 2 days later they told me I couldn't safely get my infusion until the port was fixed. I nearly came apart. It took every ounce of the self-control I had left to stop myself from screaming and stomping my feet like a, well, a 6 year old. I soon had surgery to fix the tube and was only set back a week. It turns out I was only going to get two more FOLFOX infusions anyway. That CT scan that showed the port out of place also didn't show any cancer.
I had my last chemo infusion on June 23rd. I just couldn't deal anymore. I kept doing the study drug infusions until August 18th. I had another clean scan on July 25th. This was pretty exciting. I was responding exceptionally well to the treatment. There is a lot of credit being put on the study drug. The rapid improvement through May and June was relatively unprecedented.
So I've been coming back to life. The fatigue and mood swings went away early in July, but were replaced by neuropathy in my hands and feet. Turns out I was confusing cold sensitivity with neuropathy. My feet healed quickly and once the pain subsided, I noticed the tingling numbness. As my fingers healed, so much slower, I noticed the neuropathy there as well.
On November 13th I got a migraine. It settled down after a couple hours, but the headache never left. It has hit migraine level a few times, but mostly just hangs out as a level 4 to 6 head pain. My CT scan a week later showed nothing, so I got an MRI on December 9th. Still nothing. It's funny that every ache or pain can be a sign of cancer, but when you've had cancer, it's the first thing they check. "Headache huh? Could be cancer. Let's check it out." So the question I asked myself. Do I want cancer to be the answer, or do I want to have a mystery headache for the rest of my life? I settled on mystery headache. It's actually reset my pain baseline. It never goes away, but my brain now filters it out for the most part. Oh yeah... it's not cancer. Just another part of my body breaking apart. When my doctor called to tell me the good news, the boys were running through the house playing some combat game and screaming their heads off. He now thinks he discovered the source of my headache. I'm not so sure. Those two have been running and screaming their whole lives and my head has been fine up until now. At least, up until chemo, on February 10th, 2025. I'm thrilled to put that year behind me and start the next chapter of my life. Unfortunately, it's chemotherapy again. Starting on the 24th. Yep. The cancer is back. Two spots on my liver. Shit.
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