NEW PLAN AND FEELINGS

July 31, 2025

If Harry Potter was a real person, he’d be 45 years old today. What does that have to do with anything? Nothing at all. Just a thought.

I had that appointment with Dr. Z on July 14, and we’ve started another new plan. I also had a scan after that, just a chest scan, as that is where the cancer is. So far, anyway. I don’t have the results on that yet. Radiology said it would take up to a month to get them. I see Dr. Z again on August 11.

So, what’s the new plan? The plan is to try taking one of the 20 MG Cabometyx every other day. This is to try to prevent the Hand and Foot Syndrome from occurring. I had asked if there’s anything at all I can do when I get the foot sores, creams, Neosporin, anything to go on the sores, so I don’t have to stop the meds. He said no, that the only thing is to stop the meds altogether. I’ve been on this plan for two weeks now, so far so good. But then, I didn’t get the foot sores until I’d been on the 20 MG pills for a month last time. I’m not particularly hopeful about this plan, but I trust my doctor.

I’m doing okay physically on this latest plan with the Cabometyx. I have a lot of fatigue, but no fever, pain, mouth sores, nausea, diarrhea or constipation, or any of the usual symptoms. Yeah, physically, I’m doing as well as can be expected I guess.

I had to have my port flushed a few days after that appointment with the oncologist. Apparently, the port can seal itself if it doesn’t get liquid through it at least every 12 weeks. I wonder why Dr. Z has me continue to have the port, if we can’t try immunotherapy again. It only took a few minutes to do the flush, run some saline through it and presto. However, though I didn’t have such severe symptoms, no chills or fever, I did throw up in the night after that appointment. This time there was no medicine being pumped through my port, so I wonder if there is something about the process, or the saline, that could cause nausea and vomiting. That’s the second time I’ve been sick after visiting the infusion center. Ugh.

My arthritis is still not better after the immunotherapy. Dr. Z cut the Prednisone in half, since we’re supposed to taper that off, not take it continuously forever. Now, every morning my hands are so stiff. Even typing this is difficult. I worry about how things will be when Doug goes home in September. I can’t do things like hold and pour a gallon jug of milk anymore, or even the gallon jug of distilled water I use. I couldn’t hold a half gallon of something like milk. I usually drink a glass of milk every evening. There are so many things you do with your hands, and it’s all hard for me now. What will happen when I stop the Prednisone altogether? I’m not supposed to take something like ibuprofen because the cancer meds and the ibuprofen can cause internal bleeding, so we don’t want to double those two together. The arthritis issue is discouraging and frustrating. I’ve been fighting this disease since I was born, fighting and beating it. Even though it took its toll on my joints and caused my blindness by damaging my optic nerve, I beat the odds. I should have been in a wheelchair by my twenties, but here I am 67 and still mobile. But this thing with my hands limits me in so many ways, and I just can’t bear arthritis on top of cancer.

My feelings? I live in my head a lot. I binge watch TV, The Amazing Race, Chicago Med, Chicago Fire, Blue Bloods, documentaries, old movie favorites, anything to let my mind escape. I am discouraged, and I did tell Dr. Z so last time we met. I was first diagnosed in 2021. We found the cancer had spread in 2024, and I’ve been on treatments over a year now. I kinda feel guilty that I’m discouraged after a year of treatment. I mean, I watched my dad suffer from his treatments longer than that, and I’m not nearly as sick as he was with his traditional chemo. I’m tired of trying to be positive. I’m tired of being strong. I’m tired of keeping my chin up. Part of me very much wants to wallow in the negative side of my feelings and let them run free around me. I know I can’t do that, but I want to. This coming Tuesday is my dad’s birthday, and this year, I’m missing him terribly, wishing I could curl up in his lap, with his arms around me, and hear him tell me I’ll be okay. I wish I could do the same with Mom, but she is far away and has her own health things to deal with. I guess I’m just wishing I could be a little girl when dad and mom could and did solve all my problems. or it seemed like they could and did. I’m tired of having cancer. I want to know the future, what’s going to happen to me. Will anything work against this cancer? Will it spread to some other part of my body. The lungs aren’t the only place to which kidney cancer can spread. Where will I be in a month, six months, a year? I’m just so tired.

And that last paragraph is why I haven’t posted in a while. It’s still hard for me to write about the negative side of my feelings and thoughts. I’m not used to sharing that kind of thing with the whole world. However, I did determine when starting this blog, that I would be honest. There’s no point in keeping a blog if I’m not honest. And maybe someone will read this, someone going through cancer treatments and feeling alone. Whoever that may be, they’ll know they aren’t alone. Maybe.

I’ll try to update after seeing Dr. Z on the 11^th. Until then …

WHAT NEXT?

July 10, 2025

I realize I haven’t updated in over a month, but I just didn’t have a lot to say. Things have been happening, but I just didn’t feel like writing. Shani’s death threw me out of my bubble of calm and optimism, and treatment problems discouraged me. It’s hard for me to write about the things that upset or discourage me, but I’ve promised to be transparent in this blog, so here I go.

So, yeah, Shani’s death is something I struggle with every day. I think of her often throughout my days, miss her whiny chatter, miss her snuggling at night. It took days to stop thinking I had to feed her twice a day, days to stop going to open the back door at her usual relieving times, days to stop crying at night. I have been accepted for retraining from Guiding Eyes for the blind, but that doesn’t mean Shani is being replaced. Each dog is a new beloved being, completely different and her own self. My heart will open up to the love for the new dog, but my heart will also always miss Shani, as part of me misses all the dogs who came before her. As for when I will meet NewDog, no idea. I’m someone who needs a specially trained dog, so I wait for GEB’s specialized training team to find the next furry friend.

As for treatment, remember that low dose of Cabometyx. Well, it was a bust, again! The first month was fine. I had the fatigue, some constipation, but otherwise, I felt fairly good. Still had some energy, when fatigue wasn’t visiting, but I felt better overall than I had with any previous treatment. And then, the dragons came, … uh no, I mean, and then, the second month of Cabometyx came, and everything went to hell.

Near the end of the fourth week of the first round of the meds, I started getting some mouth sores. Then early in the first week of the second round of meds, the hand and foot syndrome jumped into the mix and that was the end of that. It seemed overnight the foot sores came, two of the little buggers on one foot. I stopped taking the pills immediately, and I reported to Dr. Z, who also told me to stop taking the meds. I’ve been off the meds a couple weeks at least now, and other than feeling tired a lot still, I feel pretty well.

Oh, am I discouraged and frustrated. I’ve been doing treatment over a year now, and the only thing that showed some progress on the cancer makes me too sick to continue swallowing it down every day. What can we try next? Is there anything to try next? And what does the future hold? Even if we find a workable treatment, will it shrink the nodules in my lungs and send the cancer into remission? Will I be taking these poison meds the rest of my life, the cancer like a chronic disease that must be treated for the rest of my life? However long that may be. In the meantime, as kidney cancer can also spread to the bones and the brain, do I need to worry about it spreading somewhere else again?

Maybe it’s time I asked the hard questions. I’ve tried to stay focused on being confident and optimistic; that’s been my driving force through this whole year. But now I feel like my future is so confused and unpredictable, maybe I need to find out some truths from Dr. Z. It’s hard to ask those questions, hard to ask them with my beloved sister sitting right there, and with Doug, who is visiting, waiting back here for the answers. With these feelings of discouragement and helplessness though, it’s time to try to get the straight scoop. Also, it’s time to have a better conversation about what other treatments we can try. I like having a plan. I hate feeling like the world is all topsy turvy, with no direction or plan. I see Dr. Z on the 14^th of this month, so maybe I’ll have more info after that.

I also have to have my port flushed this Sunday. When they first called me to schedule this, I remember being half asleep, and I didn’t ask why I have to do this. I had to reschedule the appointment, and this time I asked. Apparently, the port has to be flushed with liquid every twelve weeks. If it goes longer than that, the port can seal itself closed, and then it has to be removed and a new one installed. Well, damn. I think I’m just at the end of the twelve weeks, so fingers crossed and all that. Of course, I don’t know why we’re not removing the blasted thing anyway. You know, since the immunotherapy didn’t do a thing for the cancer and only sent my arthritis wild. Yippee, ain’t life grand? So, I ask, to quote President Bartlett of the west wing fame, “What next?” Maybe I’ll find out on Monday.