So, this is my first entry since we cut off the chapters for the book at #58. There is a lot of new stuff to report, and I will update on the status of entry into the new clinical trial at the University of Cincinnati Cancer Center below. My original goal with the blog was to provide a service; namely, to pass along my learnings from living with metastatic cancer and hopefully inspiring people to live well with cancer. As I continue with the blog, I will now provide an additional service, which is to let readers know of businesses that go out of their way to serve handicapped people, as I am now living life as a handicapped person with cancer. Please see the end of this blog for the first such “shout out” to a local business.
By way of an update, I was supposed to begin the clinical trial at the University of Cincinnati Cancer Center a week ago. Despite the difficulty of the first trial, I am nonetheless encouraged with the prospects for this trial as one of the top prostate cancer researchers (and practicing clinicians) in the country – Dr. Eric Small at the University of California San Francisco - reviewed the trial protocol for me and thinks it is one of the best options available to me… if I can get in.
As I have alluded to before, getting into a clinical trial when you have been actively treated for cancer for 10+ years is no slam dunk, as prior treatment with a certain form of therapy can often be a disqualifying condition on its own. Right now, I am failing entry into the trial because the anemia that I have been experiencing for months now continues to persist. My bloodwork on Tuesday came back with a hemoglobin of 7.7, so I was immediately dispatched to the infusion room for a blood transfusion in hopes of getting that number up. Yesterday’s gift was an iron infusion, along with starting a course of oral iron as part of an overall program designed to alleviate anemia. Oh, and we discovered that I have cellulitis in both legs, so I am also on oral antibiotics to stop that infection from spreading, which would result in a trip to the emergency room.
So, how do I process and assess what might otherwise seem to be the constant drumbeat of bad medical news? Where else, on my back patio where the worries of the world seem to fade away. I am out there pretty much any time I am taking a break from work or have an hour or two where I can just relax. There have even been recent episodes where I fell asleep there, including one night this week where I did not wake up until after midnight.
My evenings on the back patio cause me to think back – with a big smile on my face – to our backyard “camp outs” with my neighbors Gary Whittle and Joe Morrison. The “camp out” pass was by far the most prized pass that a 13-to-15-year-old boy could score, especially if it was with his buddies. We were choir boys when making the ask and bad boys throughout the night, carousing the half square mile territory surrounding our neighborhood. As if somehow the Frisch’s restaurant or quickie mart looked different when it was closed at 2:00 a.m. than it did at 2:00 p.m. when it was open. I smiled the other night, thinking about the fact that all our parents would likely be charged with negligent something-or-other for allowing their kids to do the same things that parents 40 years ago didn’t even think twice about. And somehow, and this is pretty amazing… nobody got hurt.
Anyway, on any given night this summer, you might find me “camping out” in my backyard again, this time either just listening to the sound of running water from the water feature Diana created for me (on the day of our 40th anniversary, when we were supposed to be in Monte Carlo, no less), or asleep listening to the sound of the birds and the bugs that zip around in the woods behind me.
THE VIEW FROM MY SCOOTER
As previously mentioned, I now live life as a handicapped person. Although I think I was always kind and sensitive to the needs of handicapped persons, it is only in the last month or two that I have had to navigate the terrain as a handicapped person. The first thing I have learned is that things are not always what they seem.
I recently visited a business called Roebling Books in Newport, Kentucky. First, this place is a gem, and it would have been a shame if I had not been able to access and enjoy it. When we first arrived, I took a quick look around. Steps. No ramp. Ugh. Not willing to give up, Diana called the owner – Richard Hunt – and we quickly learned that he has a garage door on the side of the building that allows entry into any part of the bookstore. He opened the door and viola – we were in!
I could go on and on about how quaint and nice the bookstore is and that we should all visit and support local bookstores, but I will close out this first observation by saying please don’t give up on a business until you have given them a call, explained the situation, and given them the chance to accommodate you.
P.S. And if you have an interest in my book, please buy it from Richard at Roebling Books!
Until next time,
Steve
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