Kegels, Pads, and … Radiation?!?

After six weeks of short term disability and two weeks of COVID-19 furlough for good measure, I returned to work from the comfort of my home office. My first task was a teleconference with my India and United States counterparts over Microsoft Teams.

“Welcome back! You look good!”, my boss remarked excitedly.

I had left my video feed enabled to alleviate any fears that I was still, in fact, me, and not the sullen grey bald husk of a cancer patient portrayed by the media and Hollywood. 

“I’m not dead yet!”, I replied cheerfully in my best British accent.

( Awkward Silence )

“Uh….Monty Python? John Cleese? Black Knight? Holy Grail?”, I asked, breaking  the silence.

( More awkward silence )

“Seriously, it’s okay to laugh guys. It’s a joke! I’m fine! Really, I’m okay!”, I pleaded.

( Caution laughter )

“…. so, let’s get started”, my boss interrupted awkwardly.

Well that went well. So much for laughter being the best medicine. Next time I’ll just do a “knock knock” joke. I kept silent for the remainder of the meeting. After it mercifully ended I quickly closed my laptop, pushed myself out of my chair, got to my feet, and hurried out of my office. I realized that I had forgotten to do something very important.

Kegels…

“Dad, why are you making weird faces?”, Kaylee asked me. 

“Exercising.”, I replied, trying not to break my concentration. I was sitting cross-legged on the carpeted floor of my bedroom. 

“But you’re not moving”, she replied with a confused look on her face.

“Oh, I am. They’re called Kegels. My doctor wants me to do these several times a day so that I won’t have to wear diapers”, I told her.

“So you won’t tinkle?”, she asked with a hint of amusement.

Sigh.

“Yes…”

“Oh, okay. Can I play Minecraft?”, she asked.

“Go for it!.”, I replied, more than a little relieved that the discussion wasn’t going to become a lesson in anatomy.

Prior to surgery I learned that a sphincter, or valve, on my bladder would be removed along with my prostate. This valve, made of smooth muscle tissue, is what men typically rely on to control their bladder. Fortunately, there is a secondary, underutilized sphincter made up of the muscles that support the bladder, prostate, and ( cough cough ) rectum. Collectively, these skeletal muscles are referred to as the pelvic floor. Before going into surgery I had started doing Kegel exercises at the recommendation of my doctor to strengthen these muscles. It had paid off. Although my pelvic floor was still relatively weak, I had an idea of where the muscles were located and how to relax and contract them. 

… and Pads.

As of two months post-surgery I am about 95% continent. I can lift weights, go for walks, lift things, and even sneeze without any mishaps. Mornings are better, but by the late afternoon I get, for a lack of a better term, sloppy, as my energy levels dwindle. Mentally, such “accidents” make me feel like a two year-old flooding my pants. In actuality, it’s never more than a drop or two. My surgeon expects me to make a full recovery, and I believe him, the last 5% is just going to take significantly more time. In the meantime I wear protection ….

“What are those?”, I asked Jodie while eyeing an Amazon box she had just carried in from the front door step.

“It’s a box of shields.”, she replied while opening the box to show me its contents.

I peered inside. 

“You mean Pads?”, I asked.

“…for men they’re called Shields. The thicker ones are called Guards.”, she corrected me.

“Aren’t they all just pads?”, I persisted.

“Pads are for women. Men wear Guards; they’re grey and ….”, Jodie started to correct me.

“Manly?”, I joked.

We both laughed.

“Clever piece of marketing there, if not a little sexist. You realize we could probably wear the same freakin’ thing, right”, I told her.

“Probably…”, she admitted.

“I’m just glad I’m out of diapers …. well, again”, I smiled.

One last thing before moving one – and this is big. Farting without peeing has proved to be especially challenging post surgery. Sadly, one of my favorite pastimes now requires way more precision than such a crude endeavor deserves. As a result “pull my finger” jokes are risky and no longer as funny as they used to be. Coincidentally, the endangered California Barking Spider, which prior to my surgery had invaded my household in multitudes, have become all but extinct

The Pathology Report

My prostate and twenty one lymph nodes were removed during my surgery. These were sent to a lab where they were biopsied for traces of cancer. A pathology report was created based upon the findings. I eagerly awaited the pathology report as it would better describe the extent of my cancer and set the stage for any future treatments.

Jodie and I went over the pathology report with my oncologist in the comfort of our own home. My oncologist deemed it safer than meeting in person and, since I wasn’t due for any injections or blood work, it just made sense. 

The results weren’t surprising, just disappointing. I guess I was hoping for miracles; that my oncologist would tell me, “You know, although your scans showed metastasis to your lymph nodes, we couldn’t find anything after biopsying them. You’re good to go! Here, have a lollipop on your way out!” Instead, the report described metastasis to three lymph nodes, each with slight amounts of cancer in them. They also found positive margins meaning that the surgeon was not able to remove all the cancer at the boundaries of my prostate. To confound matters even more I had just gotten my latest PSA test results and my cancer was “technically” undetectable at .01 ng/mL. The good news is that the hormone therapy that I had been on over the last six months was starving my cancer; the bad news is that in the process of doing so, it was obscuring it as well. 

“I think we should consider radiation therapy as a follow up to your surgery.”, my oncologist told me.

Shit

Radiation

Simpsons-Radioactive-Man
Sorry Bart, but radiation doesn’t give you superpowers – unless you consider diarrhea, frequent urination, and fatigue superpowers.

When radiation is performed immediately following surgery it is called “Adjuvant Radiation”. The alternative, “Salvage Radiation”, is performed later if and when a cancer reoccurs. Although I was a little apprehensive to undergo radiation so soon, the nomenclature alone had convinced me that sooner is better. Salvage is for recovering sunken treasures and derelict cars, not for me. I want to be proactive and nip my cancer in the butt before it becomes a salvage operation. Furthermore, every study that I have read suggests that Adjuvant Radiation has an edge over Salvage Therapy in keeping cancer in remission.

The type of radiation that I am to be treated with is called External Beam Radiation Therapy, or EBRT. EBRT works by damaging the DNA within whatever cells it is targeted at. Cells with damage to their DNA have trouble replicating. Faster replicating cells, such as those found in cancer, are more susceptible to the damage and less likely to recover than healthy cells.

So far so good, right? 

Well, the problem is that EBRT isn’t discriminating. It affects both cancer cells and healthy ones. Just as a bullet will damage tissue on the way in and on the way out, so will a beam of radiation. And, although I’ve lost all affection for my prostate, I’m still very protective of everything else that surrounded it – my bladder, colon, anus, spinal columns, sacrum, small intestines, and yes – even my skin. Fortunately, EBRT reduces collateral damage by using multiple, weaker beams that converge on the tumor rather than a single powerful one. The tumor is still subjected to the same radiation, but the surrounding tissue gets a much lesser dose.

So where do I sign up, right? Not so fast. It gets even more complicated. 

More than just a letter : Photons versus Protons

There are different types of EBRT, too. The most common is Photon Therapy, which is what UCSD and most hospitals use. Much less common is Proton Therapy which, although it’s been FDA approved since the late 1980’s, maintains a “boutique-like” status and is administered in stand-alone “Proton Centers”. The difference is that whereas Photon Therapy goes through the body and damages tissue along its entire trajectory, Proton Therapy, because it uses a different type of particle, stops at the tumor and causes a lot less collateral damage. This all comes at a cost; Proton Therapy is typically not covered by insurance. 

Next week I have a consultation at a Proton Center located in Miramar, about 15 miles from my house. It’s affiliated with UCSD and my oncologist was more than happy to refer me. Honestly, I wasn’t even going to consider it due to the additional cost, but the more I thought about it the more it made sense. First, Proton Therapy would reduce the amount of damage done to an area that is still recovering from surgery. The only thing worse than wearing diapers for number one is wearing them, albeit temporarily, for number two. Second, although Proton Therapy is expensive I would pay for it without hesitation for my family. Why should I feel any different for myself? Third, after talking to a friend who has had aggressive prostate cancer for over twenty years I realized radiation therapy might need to be performed again. He told me that when a cure isn’t possible you need to treat cancer like a chronic condition. Over the years he’s had multiple rounds of radiation performed to areas in close proximity to keep his cancer in check. Whereas the collateral damage caused by Photon Therapy might make repeated treatments impossible, Proton Therapy, with its more “delicate” beam might make additional treatments more possible. If my cancer is not curable and turns out to be a chronic condition I want to make damn sure that I never run out of “arrows” to shoot at it.

Take care. Live life. Stay healthy. And thank you for your support.

-Scott

Previous : Recovering from Surgery

Next: Thank You

My PSA Chart

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#prostatecancer #cancer #prostatitis #psa #prostate #urology #oncology #radiationtherapy #radiation #ebrt #photon #proton #radicalprostatectomy #chemotherapy #hormonetherapy #surgery #lupron #leuprolide #firmagon #degarelix #docetaxel #drawnandcoded #iwillbeatthis

7 thoughts on “Kegels, Pads, and … Radiation?!?

  1. Scott, I had radiation therapy several years ago after a lumpectomy. It wasn’t bad and worked. Hope what you’ll be going through goes well. I think of you often and am sending hopefully healing vibes. Yo sure have been through a lot .

    Liked by 1 person

  2. Scott, this was interesting to read…especially about the two types of radiation!!! I remember the “Pull My Finger Trick”😇😇 You and Paul loved that! Didn’t your dad teach you that????? Not Sure!! Love reading about your experiences.
    ❤️Tia

    Like

  3. Scott, I am so happy you decided to go with Proton Therapy. From all you’ve told me and what I just read, it’s the way to go!!!!!! So it costs a little!! What good is money if you can’t use it to be healthy?! Your Avós are watching from above and are “contente” you are going with the Proton Therapy!!
    ❤️ Mom

    Like

  4. Glad you’re opting for the proton treatment, Scott! I like your rationale of doing for yourself what you’d do for your family. You’re worth it!!

    Liked by 1 person

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