"H" is for Hospice, and Hello No to That!

Things have become a lot more “real” of late. As I write these words in July 2024, I am only about halfway to the goal I set for myself in February 2022, when I started the “5 Years, 500 Words at a Time” blog. My goal was to live at least five more years with metastatic cancer.

I don’t think I was cavalier in setting that goal, but I also had no experience with how things might go once cancer breaks out of your lymph nodes and makes it into your bones and soft tissue in a meaningful way. Talk about something getting your attention in a hurry!

Despite being a “regular” guy, I have the type of care and oversight for my cancer care that you might only expect a wealthy person or celebrity to have. Through my well respected and in many cases - renowned - colleagues at Cincinnati Cancer Advisors, I have the luxury of consulting with some of the top prostate-cancer focused oncologists in the country about my case.

This almost unfettered access to great care has no doubt added time to my life and for that, I am truly grateful. My oncology team is what I often refer to as an “embarrassment of riches,” yet having so many advisors - all of which are smarter than me - can sometimes lead to cases where it is tough to reconcile the advice you are receiving, especially when not everyone on your oncology team agrees on next steps.

At the behest (or at least suggestion) of my CCA colleagues, I have made a recent change to my oncology team by engaging a new local medical oncologist in Cincinnati. I say “local” because I am fortunate to consult with other “med oncs” nationally. However, with respect to those national voices, it is your local medical oncologist who can and often does deliver your actual care. My colleague Jill Hunt calls him or her “your quarterback.”

Less than a month ago, I had my first consultation with this new medical oncologist. He first saw me at a time where things were not good at all from a physical point of view. There was a lot going wrong inside my body at the time and quite frankly, there still is. As a result, I am slowly coming to understand why he did what he did so early in our first meeting together. He said the “H” word… hospice.

His mention of hospice as a next step was brand new territory. I shot Diana a quick WTF? type glance and mustered up the only response I could think of, which was “uhhh, I wasn’t thinking I would hear that today.” A five-second-that-felt-like-five-minute period of awkward silence ensued where I did not embrace the idea, and he continued on.

Clinically, he is not wrong to at least mention it at this point, I suppose, yet it is still very difficult to hear and think about. I am a nearly 11-year advanced prostate cancer survivor and as such, I belong to several online communities where other prostate cancer guys gather to commiserate, seek advice, and in many cases, try to joke away this disease.

I have seen the progression in many cases where guys decide to stop treatment and “enjoy however much time I have left.” Given how prostate cancer generally progresses, I think statements like those are better classified as euphemisms meaning “I just don’t want to do this anymore.”

At a second meeting with this new oncologist, he once again proposed that I either resume some form of systemic cancer treatment via a clinical trial, or consider hospice. It’s clear that he wants me to understand where we are at in the process, which I do. I just can’t bring myself to “give up” at this point.

So, with full knowledge that this next step is likely to really suck at times, I have decided to enter another clinical trial in hopes of (a) living long enough to bridge to whatever the next best treatment is and (b) be part of the “science” in getting there through clinical trial participation.

Assuming I am accepted into the trial, I will start treatment in about 10 days. It will be on an outpatient basis, every three weeks, and it will be close to home at a treatment facility I am very familiar with. I will be close to family and friends, and I can be home instead of in a hospital 1,000 miles away where I don’t know anybody. I am hopeful that the results will be better this time.

So for now, I’ll respond with my own H word and say “hell, no” to the hospice idea in favor of Coach Jim Valvano’s “Never Give Up” mantra. Sometime next week, it will take everything I have in me to not pull a Samuel L. Jackson in the first Jurassic Park movie and say to Diana, “hold on to your butts” when that first infusion under the new trial starts (I will probably still say it and Diana will likely just roll her eyes).