Why I’m ( Now ) Scared of Balloons

Good news! 

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”. 

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.

proton-prostate-balloon

“…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.

“…each time?”

“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’”.

He chuckled.

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.

Pennywise, from Stephen King's IT

“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.

But, no.

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.

-Scott

Previous : Radiation “Therapy”

My PSA Chart

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

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

hiclipart.com-id_xvjlw

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