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 14th 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.