MAJOR UPDATES

December 9, 2024

I know I haven’t updated in a long time. I have been very sick for the past couple months and had no energy for writing. All my physical, mental and emotional energy went to trying to deal with all the side effects and more, trying to keep my attitude positive and hopeful, and just plain survival. However, some major things have happened, and it’s definitely time to update everyone.

Back in October I had a scan. It had been several months, and we wanted to see if the chemo meds were working. The results were pretty good; some of the lung nodules had shrunk a fair amount. But some appeared to have grown. Dr. Z thinks that the reason is my last scan was in April, but I hadn’t started the meds until mid-June. He thought the nodules had grown between April and June. With that comforting thought, I haven’t worried too much about those scan results.

Dr. Z was concerned about my side effects, so he had me try taking the meds for three weeks, and then having the fourth week off to recover some. It didn’t go so well. Each time I started a new round of the meds, the side effects came on faster and stronger than the round before. With the last round of the Cabometyx, about two days in to the third week, diarrhea hit hard and fast. Multiple times a day and every single day. one day in to the third week, new foot sores appeared. On one foot, the skin started peeling again where I’d had sores, and the other foot developed new sores where I hadn’t had any. I stopped taking the meds immediately as the doctor said. I was exhausted, hardly eating, no energy, depression falling hard on me. I was supposed to see Dr. Z the week before Thanksgiving, but other complications came along, and I had to cancel.

On November 19, A Day I’d waited for due to a book release I’d preordered almost a year before, I became very ill, with a still undiagnosed problem. Around mid morning, I started having a terrible pain all across my upper abdomen. It was agony. I went to bed because sometimes lying down helps when I have stomach pain. It didn’t help at all. I was in pain for at least 24 hours. In the middle of the night, I started vomiting, and that continued about a full day. I couldn’t eat anything and lived on any kind of liquid I could find. The pain had settled down to just the right side of the upper abdomen, so it was more livable. I was shaky and weak. I developed a fever, terrible chills, so my body was shaking hard for up to an hour, no matter how many blankets I piled on. My normal temperature is in the low 98 degrees realm, 98.1 or 3 usually. So, temps of 100.4, and 99.9 were definitely a fever. This fever, the chills, they’ve bounced around with me ever since when it all started. I even had shivers in the middle of the afternoon yesterday. The pattern would be, chills commence, I bundle up and pour on the blankets, then I get too hot and kick everything off. Then I start sweating, ending up soaking wet in a soaking wet bed. Last night was the first night in weeks that I slept well and did not have either chills or fever or anything in between.

Other than coke—I get the coke de Mexico because it has real sugar and not corn syrup—I couldn’t tolerate anything sweet. Ensure was too sweet for me. My sister brought me a milkshake, and we were both hoping that would get some calories into me, but I couldn’t drink it. It took days for me to be able to eat. The first thing I was able to eat was a little plain cream of rice with a touch of milk added. For days, really until the last few days, I could barely tolerate food. I tried different cereals, even chicken soup, and I’ve always loathed chicken soup of any variety. But that broth from the soup started helping me slowly, very slowly, begin to eat and start feeling a bit better. I ate a little on Thanksgiving, but sadly, though it’s my favorite meal of the year, I had to miss most of those yummy leftovers. Sigh.

I finally had that appointment with Dr. Z last week. I know I’ve talked a lot about his lack of bedside manner, and in the regular sense of bedside manners, he’s not one for it. But what he has is blunt, honest, straightforward communication. I can’t work with doctors who pussyfoot around and try to say things without coming out and just saying it bluntly. I’ve had an auto immune disease since birth, and I grew up with doctors whom my folks told to be honest and straight with me. I won’t accept less. I started the appointment by telling Dr. Z that I feel very discouraged. He said straight out, that I cannot take the chemo meds anymore. He said my body just can’t tolerate them. I was so thankful because that was what I hoped he’s say. He is going to switch me to something different, not a chemo med, and I’ll start that in January. He wants me to take this month off, so I can enjoy the holidays, and I think, to let my body heal and get strong before starting something new. He said the new med targets the cancer differently than straight chemo, but it isn’t always as effective as chemo would be. He said it’s much easier to tolerate. I’ll have another teaching appointment with the nurse before beginning the meds. Rosie looked them up, and they do have some scary side effects too, more mouth sores, nausea, you know, the usual crap. But since he says it’s much easier to tolerate, I’m going to try to think positively.

We also discussed immunotherapy. It’s a last resort option, due to my juvenile rheumatoid arthritis. But he pointed out that it might come down to immunotherapy or no treatment at all. If it comes to that, I will try the immunotherapy.

There were some weird numbers with my blood work this last time, but Dr. Z wasn’t worried, so I’ll try not to be.

The new med is EVEROLIMUS TAB 10MG. Now I have that name written down, I can do some research.

I’ll have another scan this month, I hope. We’re doing a full chest, abdomen and pelvis scan. I requested this because of that severe pain. I want to make sure nothing has spread or developed somewhere else.

As for my moods, I’ve been extremely down and depressed. During the two weeks with the stomach and not able to eat, I had pretty much made up my mind that I am going to die from this damn cancer. Dr. Z is not saying that, but I’ve been so sick, felt so miserable from both the chemo meds and whatever happened a few weeks ago with my stomach. I just couldn’t find a way to feel positive.

My best friend Doug is coming tonight and will spend three months with me. My sister will go home. I will miss the hell out of her. We decorated the house for Christmas the other day, and that has helped me feel a little happier. I even did some Christmas shopping this morning. Yippee.

Well, if you’ve made it this far, thanks for reading and following this cancer journal. I won’t really have much to say for a while, have to have the scan, get the results, have that appointment to learn about the new meds. I’ll try to update more regularly as things happen. It’s every changing, that’s for sure. I live one day at a time now, with no guarantee how I will feel from one day to the next. But, I’m still here.