Three months after my radical prostatectomy and my PSA test is holding steady at .01 ng/mL, which is essentially undetectable. Also, and I don’t want to brag, but I’ve stopped wearing protective pads. I still keep them around, like small absorbent security blankets, but I’ve stopped wearing them on a day-to-day basis.
… well, mostly good.
With that, I’ll admit that I think my mind is trying to undermine my recovery; that it doesn’t want to accept that things are going, well, good.
I’ve started having some mild pain around my belly button where my surgeon made incisions. After a few ill-advised Google searches I initially thought the pain was the start of an incisional hernia, but in reality I think it’s more likely scar tissue.
I’ve also been experiencing mild burning in my urinary tract where my prostate used to be as well as an increase in urinary frequency. Again, after a few more ill-advised Google searches I thought the pain was due to an increase in spicy and/or acidic foods, but the pain has persisted even after cutting such foods from my diet.
Both ailments are inconsistent and the more I think about them the worse the pain gets – which leads me to believe the issues are psychosomatic. The thing is? I’ve been down this road before when I was dealing with an unknown illness that, unfortunately, turned out to be cancer. Initially I was diagnosed with Non-Bacterial Prostatitis, or Chronic Pelvic Pain Syndrome ( CPPS ) and sent to a physical therapist. Once I was diagnosed with cancer the pain miraculously subsided, even before I started treatment. The takeaway for me was the realization that the mind can and does cause physical pain, particularly when stressed and anxious. Unfortunately with cancer, stress and anxiety are par de cor.
Part of the problem is likely physical, too. During my recovery from surgery I’ve been doing Kegel exercises to help regain and maintain my bladder control. I’ve been doing a lot, too, which is good, but whereas the exercises are designed to strengthen the muscles that make up the pelvic floor, I need to remember to practice relaxing them as well. Chronically tense muscles, as I’ve mentioned in a prior post, can get sore and cause pain. If you were to flex your arm and make a bicep for several hours it’s going to start hurting, right?
I’ve since stepped up my meditation and mindfulness and, when I am doing my Kegels, I remember to tense and relax. So far it’s seemed to help.
No on Proton Therapy
I had a consultation with a California Protons last week. The facility was beautiful, if underutilized. The doctor was running late and as I paced the waiting room for thirty minutes I only saw a single patient, a young boy about ten years of age being rolled into treatment in a gurney. As a nurse rolled him through a couple of double doors it reminded me, sadly, that cancer knows no bounds.
Surprisingly, my consultation at the Proton Center had the opposite effect; it actually steered me away from it and back towards Photon therapy at UCSD.
What convinced me?
First, I learned that neither treatment is more effective than the other; both Proton Therapy and Photon Therapy are just as effective in killing cancer.
Second, I learned that the biggest difference between the two is toxicity, or collateral damage caused by radiation. The doctor I met with, who also works at UCSD, explained to me the different mechanisms used at both facilities. Photon, as I mentioned in my last post, is like a bullet with an entry and exit point. However, what I learned is that newer equipment, like that used at UCSD, greatly reduces toxicity by using a series of revolving, not fixed, beams. The beams converge on the tumor and, because they revolve around an axis, my body, the surrounding tissue, overall, gets significantly less radiation than it would with a fixed beam. Although Proton has no exit point, it still has an entry point, and because the beams don’t revolve, the entry point gets, arguably, more radiation than with Photon therapy.
Third, I realized that I’m terrified of balloons.
“So, what’s that advertisement for?”, I asked the doctor. Behind him and to the right was a placard labeled “SpaceOAR HydroGel”.
“Oh, you won’t need that. It’s a gel designed to minimize radiation damage. It’s inserted between the prostate and the rectum to protect the rectum from damage. You don’t have a prostate anymore so it’s unnecessary…”, he told me.
Phew. Dodged that bullet. A smile crept on my face.
“… but you will need this…”, he continued. He turned around, opened a drawer on his right, pulled out a small, deflated, plastic bag with a long hose attached to it, and held it up for me to see.
“…uh, and what might that be for?”, I asked, the smile disappearing from my face.
“It’s an inflatable balloon that we insert into your rectum prior to treatment…”, he replied.
“…. every treatment?”, I interrupted.
“…. yes, every treatment as well as during your initial scans to align everything. The bag is inflated …. “, he continued.
“…. in my rectum?”, I interrupted again.
“… yes, in your rectum to keep everything stable so that the proton beam can be used more precisely.”, he finished.
At this point I just stared at the balloon dangling from the forefinger on his right hand, my jaw dropped open.
“… for thirty treatments?”, I asked, terror creeping into my voice.
“Oh, about 37 including the scans.”, he replied.
“Yes”, he said, and after catching the terrified look in my eyes, he continued, “It doesn’t hurt. There’s even an entire club dedicated to it called the ‘Brotherhood of the Balloon’”.
I mocked a laugh.
Sorry, Pennywise, but there’s no way you’re going to convince me that shoving a balloon up my ass and inflating it isn’t going to hurt, red or otherwise.
“You’re, uh, not selling this very well you know.”, I joked, “Is the balloon used in Photon Therapy as well, or just Proton Therapy?”.
“No, UCSD doesn’t use it when administering Photon Therapy, However, they might if you’re interested though!”, he joked.
“You might even like it!”, Jodie chimed in.
Shit. I forgot about Jodie.
I had her conferenced in on my iPhone which was sitting on the seat next to me. Due to the Coronavirus restrictions she wasn’t allowed into the consultation.
Leaning over my iPhone I grumbled, “You first.”
Then I quickly turned back to the doctor.
“No, no, …. I’m good! Thank you.”, I smiled, realizing that my decision just got a little easier.
Lastly, there’s the cost. Insurance doesn’t cover the treatments, only the supplies and materials. The total bill would be between 10-15 thousand dollars which, although expensive, also includes an MRI, a CT Scan, and 30-40 balloons. To put it in perspective, UCSD billed my insurance company upwards of 10 thousand dollars just for an MRI so, relatively-speaking, it was a great deal.
If I still had my prostate I’d seriously consider Proton Therapy for its precision and reduced toxicity, but my prostate was removed four months ago. Also, due to hormone therapy and my low PSA score, my cancer isn’t likely to pop up on any pre-emptive scans like a big bulls eye, either. Aside from my lymph nodes, which will be specifically targeted, my doctor will be essentially taking a shotgun approach and blanketing my nether regions with radiation. I don’t see how precision really matters and, seeing how the radiation is administered, at least at UCSD, the amount of collateral damage is evenly distributed.
My 3rd Lupron Shot
“Pull your pants down a little, please”, the nurse asked me.
I was at UCSD again. I had just met with my oncologist and it was time for another shot of Lupron, the hormone therapy drug that had been effectively starving my cancer for the last several months. I craned my head over my back to watch as my nurse put on a hazmat suit, gloves, and face shield.
“How come I don’t get a suit, too?”, I joked.
She laughed as she pulled a largish syringe from a hazmat baggie and started rolling it between her palms as if she were making a snake out of Play-Doh.
“Why are you doing that?”, I asked.
“To warm up the medication and lower it’s viscosity”, she replied.
This was my third shot of Lupron. I still couldn’t get over the fact that I was being injected with something toxic enough to require protective clothing.
“Let’s do the left cheek this time. Bend over and put your hands on the exam table.”, she said, still smiling.
I winced as she pinched my ass, stuck in a needle, and slowly, oh so slowly injected the fluid.
“All ….”, she started.
Are we done yet ?!?
“…done!”, she finished.
“Do I get a lollipop?”, I exhaled, giving her my best attempt at a smile.
I unclenched my hands from the exam table, leaving 10 deeply imprinted sausages in the vinyl padding as an ominous warning to future patients.
“Nope, just a bandaid,”, she replied.
“Probably for the best.”, I agreed as she slapped a bandaid on my buttcheek. I had read a lot about how cancer feeds on sugar, so handing out lollipops probably wasn’t in the best interest of anyone.
“Please make an appointment for another shot in three months!”, she told me as I gathered up my stuff.
I was tempted to ask if UCSD offered customer loyalty cards and if the fifth shot was free, but resisted. As I waddled out of the exam room I recalled one of my first meetings with my oncologist, when he told me that I would be on hormone therapy for two years. I managed a smile as I realized that, as of today, I was now one-third of the way through treatment. Next up? Radiation – using Photons, at UCSD.
Take care. Stay healthy. Live life.
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