Mom: Next Steps

Bad news from our last visit to the urologist at UCSF. After almost a full day of lab and radiological tests, we learned that the cancer has metasticized, which means it has spread. Her doctor, a surgeon, referred us to a urologist-oncologist (a urologist with a specialty in cancer). Our appointment — after I called every single day and started sending frantic emails to the clinic coordinator — is this Monday. There we will learn the next steps, like some kind of chemotherapy regimen.

I have kept uncharacteristically quiet about this, mostly because my emotions are broiling just under the surface and it takes all my energy to keep it together. I am in the urgency stage — remaining calm and focusing on what needs to be done.

The technical details
Although my mother’s cancer started in her left kidney, it’s called transitional cell carcinoma (also called urothelial carcinoma). It’s technically a bladder cancer and typically the treatment regimen follows that pathway.

I’m trying to stick to reliable sources of information from the American Cancer Society, the National Cancer Institute, ASCO and some others. Although I can’t understand the detailed medical journals, I have fumbled my way through some very informative technical articles that give me overviews of what we now know.

Our hope is that her UCSF oncologist can prescribe a regimen that can be delivered by an oncologist or infusion center in Napa. While I’d rather keep her under the care of a major academic medical center (and we would go back for follow-ups in any case), the logistics seem to be easier in Napa.

My mother has a small army of friends who have offered their assistance in multiple generous ways. Additionally, giving her the opportunity to sleep in her own bed, visit her own garden and generally be in her own environment will give her a sense of normalcy and calm that is critical at this time.

The Other Details
I am also re-discovering my foundational beliefs about spirituality, connectedness, nutrition and other things and how they relate to health and recovery and wellness. I’m going back to more routine yoga, I have blown the dust off long-ignored meditation CDs (and have downloaded some podcasts).

I have a long history of keeping a journal, which I’ve largely ignored for about 15 years. I’ve taken it up again, partially as a therapeutic aid for myself and partially for recollections.

At some point I may post some of those. But I’m not ready yet.

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