Well I’m finally off on my journey. The train has left the station. Getting to this point required that I research this strange land, learn the language, plan my route and book my tickets. As I write this I’ve finished the first week. I started radiation last Monday and will continue every weekday afternoon for 9 weeks.
As I wrote here in October announcing my diagnosis, prostate cancer had been expected and was not a surprise. Still, once it was confirmed, the news came as something of a gut punch. I’m processing it, though. A lot of the time my attention is elsewhere and I’m not thinking about it… consciously. My subconscious mind, however, doesn’t forget.
I have to say I’ve been touched and very much appreciate the outpouring of love, encouragement and support I’ve received on Facebook, in private messages and from people in person. A former neighbor who survived cancer sent me a wonderful card and note. Several people I used to work with before retirement have reached out too. Current neighbors have offered rides to my treatments if needed and meals later on when radiation will likely have me feeling wiped out. (So far I still feel totally normal.)
And, you know, no matter what’s going on in life there’s always humor and laughter to be found. It’s essential for both mental and physical health. The other day I paid a man from down the street to the mow the lawn and blow leaves. He’s semi-retired and does this for income or maybe just something to do. I explained that I can normally handle it myself but was having a medical procedure done that week and preferred not. We talked more and I explained that I had prostate cancer. With that he proceeded to tell me stories of all the men up and down our street who’ve also had prostate cancer. One guy had radiation, another had his prostate surgically removed. It’s not funny… yet it somehow was. Here we were standing in the driveway gabbing away about treatment choices like we were discussing cars or sports teams. I laughed when I told David later and I still smile now. Thankfully the men he told me about are OK.
And frame your mind to mirth and merriment,William Shakespeare
which bars a thousand harms and lengthens life.
In October I wrote how we came to know I have prostate cancer and our decision-making process to select External Beam Radiation from a menu of treatment choices. Today I will pick up the journey from that point.
1. 2021 Prostate Cancer Forum
On Saturday, November 6th I attended an all-day ‘Prostate Cancer Forum’ presented by the Gathering Place, a truly wonderful agency in the Cleveland area that assists people with all forms cancer as well as their families, caregivers and friends. They have east and westside locations plus virtual programs online. Their services cover an extremely wide scope from education to counseling to recreation to legal issues to wigs for women undergoing chemo, and much more — all for free, but donations are welcome and encouraged. <Hint>
The day-long forum was broken into five sessions presented by leading area physicians concentrating in prostate cancer care and treatment (see program). Sessions included ‘The State of Prostate Cancer in 2021’, ‘New Diagnostic Testing for Prostate Cancer 2021’, ‘Genomic Revolution of Prostate Cancer’, ‘Treating Recurrence’, and ‘Managing Side Effects’.
It was a bit like crashing a med school class, but the information was presented with laymen in mind plus the audience was obviously motivated. Overall I was immensely inspired and encouraged. The average survival rate when my Dad had prostate cancer in the 1980s was 83%. Today it’s 98%. As good as this is, things are looking up even better in the near future. Several huge breakthroughs are expected within the next 6 to 18 months, some of which have FDA approval and are ready to go right now. The main delay is resistance from the insurance industry.
After PSA blood tests and MRIs, final confirmation of cancer and assessment of its grade or severity is made through physical biopsies. These biopsies are “routine,” yet potentially very dangerous and even life threatening if Sepsis develops. Soon a new option will be available. A ‘Liquid Biopsy‘ is now on the horizon. This is a blood test that will be more accurate than a physical biopsy and can sniff out stealth cancers hiding in places like bone. A physical biopsy can miss a spot in the prostate by the tiniest fraction, resulting in an adequate diagnosis and insufficient treatment.
Another exciting advance are PSMA PET/CT Scans, or “Prostate-Specific Membrane Antigen.” Yeah, I don’t know either, but should my PSA rise in the future after I’m supposedly “cured,” that will signal a possible recurrence where some cancer has escaped and has taken up residence someplace else. These scans are excellent at finding it. They’re already in use in India, Brazil, Israel and Australia.
All great news, but prostate cancer is still cancer, and it’s still dangerous. Despite our progress to date, 20% of high-grade prostate cancer is missed by MRI. That’s a startling figure! And, as mentioned, even guided by MRI a physical biopsy can miss that “important spot.” And this is before we talk about people lacking adequate access to quality health care, or any health care.
Still, I was feeling pretty upbeat when the final session of the day began. This one focused on Erectile Dysfunction. ED is among the most common side effects of prostate cancer treatment. I have to say this last session left me a bit deflated (pun intended).
The speaker reviewed nearly a dozen treatments, starting with Viagra of course. OK, so far so good. But then he moved on to an array of contraptions I couldn’t believe. Some of the devices looked like medieval torture implements. One treatment involves inserting an applicator into the urethra that places a suppository in there. Ouch! Another treatment involves an injection by needle to an appendage I never conceived, much less by voluntary self-administration. I don’t think any amount of candles and wine could restore my mood! When this session ended I was ready to call it a day.
2. SpaceOAR Hydrogel
On December 1st I underwent the first official procedure of my treatment, insertion of “SpaceOAR Hydrogel.” This video can best explain it.
I was greeted warmly by staff at the Northern Ohio Regional Cancer Center (NORCC) where my radiation treatments are taking place. From the moment I arrived until I left every effort was made to ensure that I was comfortable. After checking my vitals they led me into an exam room. The first thing I noticed immediately was stirrups. “This will be interesting,” I thought.
With my legs in stirrups, I had to scoot down to the very edge totally exposed and vulnerable. There were four people crowded in the small room with me. I immediately gained a new sympathy and appreciation for what women go through!
Dr. Jon Prescott performed the procedure while another doctor was stationed at the ultrasound monitor. A third doctor observed while Dr. Prescott explained to him what he was doing. When asked if I was OK, I said yes as long as no one said “Oops!”
Unlike my experience calming myself and being present when I got my biopsy (described in my first post), this time I wasn’t quite as able. Too much mind activity was required. There was lots of discussion between the doctors, with some of it was directed at me to explain things or ask me questions. Eckhart Tolle probably could have been fully present and surrendered even under these circumstances, but my skills aren’t as good. Still, I did pretty well.
The procedure was done under local anesthetic which required shots inside and out. I didn’t count them, but there must have been at least four and they were pretty painful. One in particular was especially intense. However, being shots, the pain was over in literally a second or two. The rest of the procedure wasn’t bad, a bit uncomfortable but not painful.
The fourth person in the room with me was a nurse, Mary. She was fantastic. She stood at my side stroking my arm for comfort throughout the procedure. She asked every minute or so if I was OK. That was so nice and totally unexpected. I’m sure I appeared a little tense. I know I flinched at that worst jab I described. Mostly I tried to just breathe. In the end all was fine. Afterward I was a little uncomfortable for a day or two but that was it.
Eventually the SpaceOAR will be absorbed into my body and expelled, but it should remain long enough to complete the full course of radiation.
3. CT Mapping
The next day I went to a mapping session where a CT scan created a three-dimensional electronic model of me. This model or map provides the precise coordinates pinpointing exactly where the radiation will be aimed. It was quick and completely painless.
This was the machine…
…and this was the result.
The technician showed me how the images can be rotated for viewing from all angles. Points were tattooed on my pelvis that will be used later to line me up precisely during radiation.
Interestingly, during the scan there was a tiny little monitor positioned inside the scanner for me to see. It displayed color illustration of a baby blowing bubbles. I mentioned this to the technician who was totally surprised. She’d never heard this and had no idea about it. Seriously, no one ever mentioned this? I guess people close their eyes. I wanted to take in as much as I could. Later I searched unsuccessfully online trying to find a video clip or even mention of this image.
Anyway, the doctors now had their TripTik so next up was the radiation itself.
And finally, on Monday this past week, I began my 9-week course of External Beam Radiation treatments. The first day was totally painless and the procedure itself should remain painless throughout the nine weeks. Side effects, however, will likely start hitting this coming week or the week after. I’m told I’ll probably feel tired and experience some discomfort with painful urination. Hopefully nothing more, but either way I will have support. So far the staff at NORCC have been beyond wonderful. I will meet routinely each Monday with the doctors to review my status and any issues. If I need help any other time that will be available too.
Since patients arrive everyday for treatment we walk in the building almost as if we work there. I wave to Reception as I pass by and head for the waiting room where there are comfortable chairs, magazines and a TV.
Treatments commence promptly at the scheduled time. A nurse or technician fetches me and we head down the hall to the “bunker,” I’ll call it. The thick door brings to mind the President’s bunker beneath the White House.
Inside is the radiation machine, a linear accelerator or LINAC.
I drop my pants and lay on my back with a pillowcase strategically placed. Modesty is difficult to maintain in medicine.
Technicians use the tattoos on my pelvis from the CT mapping to line me up exactly with red laser lines projected onto my body. Once I’m in position they flee the room, of course!
The table I’m laying on moves back until my head is close to the wall. You can see a circle on the wall on which equipment is mounted. That circle moves, enabling all those panels to rotate back and forth around me. Mostly I just hear the whirring on the motor as everything circles around me mechanically, but there are occasional buzzing noises too as beams of radioactive energy are emitted from different angles. All this is accompanied by 80s rock music playing from the ceiling.
This video from a cancer center on Canada’s Prince Edward Island presents a good overview that pretty much matches the process I follow each day.
Everything takes about 10 minutes. Then I race from the room to pee because I have to drink 24 ounces of water 30 minutes before the procedure. They need my bladder full so it will rise away from the prostate and not get hit with the radiation.
As I mentioned above, on Mondays I meet with the doctor to review how treatment is going, to address any issues or side effects, and to answer any questions or concerns I have. Everyone always explains everything thoroughly and there are ample visual aids to assist!
It’s hard to call a cancer experience “positive,” but thus far things have been remarkably upbeat starting with an optimistic prognosis and promise of imminent medical advances. It’s all been reinforced by very nice people throughout the journey — my husband especially.
So I was a bit surprised by the feeling that swept over me as I underwent my first radiation treatment on Monday. Reality just hit me: “This is serious. I’m laying exposed on this gigantic machine being shot with radiation. This is happening because I have cancer. Cancer!” It wasn’t that I felt freaked out or upset. It’s just that in the moment the magnitude of the situation sank in. “Although I feel fine, I have a serious illness that could potentially kill me and/or degrade my quality of life. Wow!”
This isn’t what I planned for retirement and hopefully it will prove to be a temporary inconvenience. And as I said in my first post, it could actually prove to be a gift — if I choose to accept it as such. Situations like this can clear away the trash that clutters our minds and makes us unhappy. As a favorite teacher of mine says,
Wake up! If you knew for certain you had a terminal illness — if you had little time left to live — you would waste precious little of it! Well, I’m telling you… you do have a terminal illness: It’s called birth. You don’t have more than a few years left. No one does! So be happy now, without reason — or you will never be at all.Dan Millman
I’m working at it. As I proceed along this journey I’m mostly a student. But through this blog in the coming weeks I will bring to you some of the teachers sharing lessons that I’m studying and that I suspect most all of us need.
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