Surprise! Radiation therapy does not make you the next superhero. In truth, it just makes you crap your pants. For more go here.
It’s official. I’ve had every single orifice probed this year minus my ears – and the year isn’t even over yet. Today it would be my nose. As part of my radiation therapy I needed to get a COVID swab done. UCSD offered it as a “drive through” service at the clinic near my house. As I pulled into the clinic parking lot I spotted a group of white canopies at the far end. I slowly pulled into the middle of them, stopped at a sign, pulled my face mask over my nose and mouth, and watched as a nurse suited up in a white hazmat suit and face shield.
She walked over and I rolled down my window.
“I’m here to have my brain swabbed”, I joked, grinning.
Earlier in the week I had talked to my mom and aunt, both of whom had the same test and reassured me that the “new” COVID tests just “grazed the nostrils”.
The two eyes behind the face shield, now foggy, squinted.
“Are you having a procedure done? What is your name and birthday?”, a voice emanated from behind the face shield.
“Yes, I start radiation therapy on Thursday. Scott Vandervort. March 1st, 1976.”, I replied.
The nurse walked back to her computer to verify, I assume, my appointment, and came back with a test kit.
“Pull your mask down and try to relax.”, the face shield instructed.
I did as the nurse requested, leaned back into the passenger seat of my car, gently rested my hands on the armrests, and closed my eyes.
I took a deep breath and felt the swab slide into my left nostril.
“Easy peasy”, I thought.
And then the swab kept going up.
As the tip neared my brain the nurse decided to start twisting it around to, I assume, cause as much irritation as possible.
I started gagging and dug my fingers, deep, into the armrests.
“Gaaaaa….Gug…..”, I gurgled, my eyes now wide open and staring at the wooden rod being twisted into my head.
“There!”, said the nurse, withdrawing the swab after what seemed like an eternity.
I started laughing impulsively.
“Holy sh***, that wasn’t cool at all!”, I gasped between laughs.
At least I was done. Through watery eyes I could see that the nurse was busy capturing my swab in a test tube.
Thank God.
“Okay, then. Well, thank you! I’ll, uh, head out now…”, I ventured.
The face shield, still foggy, turned towards me.
“….and now the left nostril”, it said.
A fresh swab had replaced the used one in the nurses’ gloved hand.
Oh, fuck…
“Kaylee! Where are you?”, I bellowed while trudging up the stairs.
“Kaylee, are you in there?”, I asked while carefully opening the bathroom door.
“I’m changing!”, Kaylee screamed.
SLAM!
Okay, dad fail, even for an 8 year old.
“I’m changing!”, Kaylee screamed again.
“I can see that! What’s with the black and gold shirt? What does it say?”, I asked.
“Nothing!”, she screamed back.
Before I could respond the door blasted open and Kaylee zipped out with a towel wrapped around over her clothes. She stared at me, and before I could react, she ran down the stairs.
Shaking my head I followed her.
“What in the hell is going on around here?”, I grumbled loudly, stomping down the stairs.
As I turned towards the kitchen Jodie stopped me.
“The girls and I want to give you something before your first treatment.”, she smiled.
Ashley and Kaylee marched in. Kaylee, dropped the towel she had been hiding behind. Both girls were wearing matching shirts. The shirts read “Dad Daughter Team” in gold lettering. My tears started almost immediately.
Jodie handed me a heavy wrapped bundle.
“Good luck today with your radiation, dad.”, Ashley grinned.
“Open the gift!”, Kaylee urged.
Ripping off the wrapping paper revealed a hardbound copy of “Radioactive Man”, authored by Matt Groening, the creator of The Simpsons. In the TV Show, Radioactive Man is a superhero who gains his superhuman strength through radiation. He is Bart Simpson’s favorite comic book character. Jodie and I had introduced the girls to The Simpsons early on during the COVID lockdown and they love it. We started from the beginning of the series and are watching season 6 now. The gift was perfect.
I gave them all a bear hug, and while doing so, secretly wiped the tears from my eyes.
“Thanks guys. I’m not really sure what to say.”, I said. Then, looking at my watch, ” I, uh, should probably get going to my therapy.”
“Do you think you’ll get superpowers?”, Ashley asked me, joking.
“I guess we’ll have to wait and see….”, I replied, smiling.
My girls and I. Hoping for superpowers … and a cure.
Radiation therapy at UCSD is administered out of a couple of squat one-story nondescript buildings on the south end of the medical campus. Upon checking in I was handed a blue card with a bar code by the receptionist.
“Every day, upon your arrival, swipe the card to alert your therapy team that you have arrived.”, the receptionist told me. I was also provided a parking placard which allowed me to park, for free, in front of the facility.
“Uh, should I swipe the card even though my bladder isn’t full yet?”, I asked.
“How much have you drank?”, she replied.
I held up two large water bottles, both empty, and smiled.
“Ah. Why don’t you sit down in the waiting room and wait until you feel full”, she said.
I sat down, pulled out my copy of Radioactive Man, and tried to read, but instead caught myself watching the only other patient, a man slightly younger than me hastily drinking water from a small water cup. While I watched he refilled it two more times before he was ultimately called back for, I assume, therapy for prostate cancer. The water was a dead giveaway.
Sigh.
The good news is that, for once, I wasn’t the youngest person in the room. The bad news was that there was someone younger than me.
Cancer sucks.
Almost on queue, my bladder, now inflated to capacity, screamed at me.
Clenching my legs together I squirmed to the kiosk, swiped my card, and sat back down, crossing my legs. Within minutes a nurse greeted me and led me into the back room.
“Hi, Scott. My name is Mark. I’ll be part of your therapy team.”, the nurse said while guiding me to a smaller waiting room.
“We try not to make the prostate cancer patients wait too long for their therapy.”, he said. “There’s someone using the room now, wait here and I’ll come and get you in a couple of minutes.”
Across from me I could see another room filled with glowing screens, buttons, and knobs. People in scrubs and white coats were busily watching the screens and pressing buttons. Adjacent to that room was a wall plastered with an enormous glossy decal of a relaxing scene of green rolling hills, flowers, and trees.
As I watched the wall it slowly started swinging silently outward. It was then I realized that it wasn’t a wall at all, but an enormous foot thick door. Huge hinges supported its weight. The man who I had seen earlier walked out and within a minute I was ushered in.
The radiation “vault”. Don’t let the flowers fool you, this doors’ purpose is protect everyone else ( but me ) from the radiation inside.
“The rolling hills are a nice touch, but I can’t shake the feeling that I’m walking into a bank vault.”, I joked with my nurse.
“Yeah, the doors are to prevent the radiation from escaping.”, Mark said. “Can you tell me your name and date of birth?”
“Scott Vandervort”, I responded, and recited my birth date.
He glanced down at my shirt for a second before continuing.
“And, uh, although it’s obvious from your shirt, what part of your body are you getting therapy for today?”, he smiled.
I quickly glanced down.
“Oh, right!”, I smiled.
I forgot that I had worn my Prostate Cancer t-shirt for the occasion. Jodie had bought it for me during my prostatectomy five months ago. The shirt depicted a blue hand giving the ( not middle ) finger with the words “Give Prostate Cancer the Finger” emblazoned across it. Subtle, it was not.
“Well, I’m getting the area where my prostate used to be irradiated.”, I said.
Nodding Mark led me to a large white behemoth situated in the middle of the room. It looked eerily similar to an oversized washing machine, the front load type, with a large gaping hole where, I assume, I would be in a few minutes. Two other nurses were busily preparing the gurney on which I would be rolled into the contraption. On top of the gurney was the plastic mold that was taken of my legs during a prior appointment.
Insert body here.
I was told to lie down on the gurney and the nurses situated my legs into the mold. I was then told to lower my pants a bit so that they could align the equipment using the three tattoos that had been applied during the same appointment that I had the leg mold done.
“Everything looks good”, Mark said, “We’ll be on the other side of that door during the procedure.”
“Uh, this will be quick, right?”, I asked. My bladder was now screaming as it struggled to hold back the 50+ ounces of water that I had pumped into it.
“About 10 minutes.”, he replied.
Mark turned and headed out of the vault.
As the door sealed shut I found myself alone, with a throbbing bladder, in a washing machine, listening to “Proud Mary” by Creedence Clearwater Revival being pumped in through tiny little speakers. I anxiously awaited what would happen next. I didn’t have to wait long.
Buzzing noises.
The clacking of some relays followed by the gurney dropping a fraction of an inch.
A faint whirring noise.
And that was it.
It was anticlimactic and at the same time, absolutely terrifying. I didn’t feel anything. Radiation is scary like that. Unlike my surgery, where the pain and damage was obvious, the effects of radiation are not as perceptible, at least for a while. Instead of physically removing the cancerous cells, radiation blasts away the DNA that allows them to replicate. Whereas surgical pain is immediate, radiation pain builds time as the body struggles to clean up the husks of dead cells and rebuild new ones.
The enormous door slowly opened again on it’s gigantic hinges and Mark and the rest of my team re-appeared from behind it. They helped me to a sitting position, unpeeling my legs from the plastic forms.
“That’s it, huh?”, I asked, a little confused.
“That’s it.”, Mark said. “Remember that after tomorrow’s appointment you have an appointment with your doctor. You’ll meet with him weekly to review how your radiation is going.”
“And the, uh, bathroom?”, I asked.
“Across the hall on your ….”
I rushed past Mark, threw open the bathroom door, and uncorked Niagara Falls in quick succession. The relief was immediate, but short lived.
By the time I had driven home my bladder had completely refilled again. I barely made it through the door and into the bathroom before bursting.
“Day one”, I thought to myself while shuffling to the couch.
And then I crashed, hard, for a couple of hours.
“So, you’re thin. Normally that’s a good thing, but not so much for radiation. You’re probably going to have a little worse diarrhea than my usual patients.”, Dr, Rose explained.
“Awesome.”, I replied, flatly.
I had just finished my second radiation treatment and, after a quick visit to the bathroom, I was meeting with my radiation oncologist in a small exam room.
“So, how are you holding up? Any questions?”, Dr. Rose asked me.
“Aside from having to chug and retain so much water, it’s been pretty uneventful. I’ve been through surgery and have been on hormone therapy for almost a year now. It can’t be any worse, right?”, I ventured.
“…well, except for the diarrhea, but mercifully, hopefully, the onset should take a while as the radiation damage accumulates in my body…”, I continued.
Dr. Rose nodded. Realizing that I wasn’t quite done yet, he waited patiently for me to continue.
“So, that door.”, I asked. “I’m assuming that it’s not just for looks?”
“That’s to protect the technician and doctors from stray radiation…”, he started.
“So, I’m getting secondary radiation in there?”, I interrupted.
“Yes, you are. The radiation bounces around a bit, so you’re getting minute radiation to other parts of your body, too. It’s small so you shouldn’t worry too much about it. The doors are to protect the people working the equipment as, without it, they’d be exposed to it continually.”, he finished.
“And the machine itself?”, I asked, “When I’ve had MRI’s the gurney I laid on was slid in and out of the, uh, glory hole. This time I didn’t move at all. Are you still targetting my entire pelvic area?”
I swept my hand across my groin to my belly button for emphasis.
“Yup! The radiation is applied in a wide band. You’re getting the full treatment.”, he reassured me.
“And, if I hadn’t previously had surgery, would I be getting more treatments?”, I asked.
“The treatment is similar. If you still had your prostate you’d have an additional 4 treatments.”, he replied.
I smiled, satisfied, and then yawned.
“Thanks, Doctor. I’ve been really impressed by how quick and organized everything is.”, I said.
“Your welcome, Scott.”
Not using the bathroom on my way out was my biggest mistake. I was about halfway home before I realized that there was a very good chance that I was going to flood my wife’s car with 40 ounces of irradiated urine. Granted, her car was 15 years old, but neither of us were ready to replace it yet. My foot slowly depressed the accelerator and as my bladder expanded my speed increased.
I pulled into our driveway a little fast.
The front end of my wife’s car dug hard into the lip of the driveway with a crunch, ducked under the still rising garage door, and screeched to a halt. I left the keys in the ignition, swung open the door, raced inside past my dog and youngest daughter, and relieved myself in the bathroom.
“Only 32 more to go … ”, I exhaled, realizing it was going to get a lot worse before it got better.
“… but they wouldn’t put me through all of this if they didn’t think there was a chance that it’d work.”, I finished.
“So how was day two?”, Jodie asked as I exited the bathroom.
“Well, no superpowers yet, although I’m a little curious what superpowers one gets while getting their crotch irradiated.”, I replied.
“Well, it’s Friday, so that means you get a two day break from treatments.”, she smiled.
“Good point!”, I replied.
“You know, the only superpower I’ve managed so far is the ability to take spontaneous naps, anywhere, anytime… ”, I yawned, “… and retain a gallon of water in my bladder.”
“Not too super…”, I shrugged as I walked over to the couch, laid down, and promptly fell asleep.
Ever have one of those weeks where everything just happens all at once? Like a slow moving train wreck, you can see it all coming, but aren’t really sure when or if it’s going to hit until it does? Last week was one of those weeks, and it all started with a couple of phone calls…
Ring (Bzzzzz) Ring (Bzzzzzz).
I looked up from my laptop to my buzzing iPhone to see my boss’ name staring back at me. I was used to early morning meetings, but this was earlier than usual.
“Let the games begin!”, I thought to myself, smiling.
“Hello?”, I answered.
“Hi, Scott, do you have a few minutes to talk?”, my boss asked.
“Sure, what’s up?”, I replied.
A new voice chimed in. She introduced herself as Tracy, from HR.
Uh oh.
“Hi, Scott. We regret to inform you that as part of the restructuring, your job has been eliminated.”, Tracy told me over the phone.
I’ve never been laid off over the phone before. Chalk it up as another COVID first, the pandemic has changed the way we live, work, and apparently, are dismissed.
My company, like all companies, has had an incredibly rough year. A couple weeks ago the CEO had announced a restructuring and 20% headcount reduction. The call wasn’t a surprise, but still left a pit in my stomach given that I was pending radiation therapy for my prostate cancer. In the United States health insurance is typically tied to employment. An interim solution, COBRA, can bridge your insurance till your next job but it’s not only messy to set up, it’s also incredibly expensive.
Tracy walked me through the process of returning my laptop, COBRA, severance, and vacation payout. At the end of the call my boss chimed in.
“Thanks for your service, Scott. Call me if you need anything.”
Click.
And that was it.
Or so I thought. Within minutes my phone rang again.
Ring (Bzzzzz) Ring (Bzzzzzz).
This time I considered letting it go to voicemail before ultimately picking it up.
“Uh …. hello?”, I answered, a little more cautiously this time.
“Hi, Scott. This is Karina at UCSD. I’d like to set up your initial body mapping for radiation therapy.”
“Oh! I’ve been expecting your call. I guess you finally got insurance approval?”, I replied.
“Yes, we did. Sorry about the delay.”, she said. It had been almost a month since I had been told I was healed enough from surgery and ready for radiation therapy.
“No problem. Honestly, I wasn’t in a mad rush to get my crotch irradiated until just a few minutes ago”, I replied, more than a little concerned about what would happen once my health insurance was migrated to COBRA. Between surgery, appointments, and hormone therapy I had quickly maxed out my out-of-pocket within the first few months of the year, I really didn’t want to start from zero again. Cancer is an expensive beast to tame.
Wisely, Karina avoided the bait about why I was in such a hurry and proceeded to outline the procedure.
“You will need to perform an enema and drink 24oz of water leading up to your appointment.”, she told me over the phone.
…
“Scott, are you still there?”, she asked.
“Like an enema, enema?”, I asked.
“Yes.”
Ugh.
…
Thirty-five years ago I had my first experience with an enema at, of all places, a waterpark. There was a slide there named “The Nairobi Express”. Three stories up, at the top of the slide, there was a large sign instructing riders to cross their legs. At the bottom was a shallow pool of water designed to slow riders down after their descent.
The “Nairobi Express” at the now-defunct Wild Rivers water slide park in Irvine, California.
In my excitement I ignored the sign and forgot to cross my legs. After launching myself off the platform and craning my head back in glee to see that I had beaten my friends to the bottom, I tore into the pool of water at the bottom and came to a very sudden and painful stop. After three lengthy trips to the bathroom I spent the rest of the day on the “Lazy River” nursing my wounds.
….
“Scott, can you do that?”, Karina repeated.
“Huh?”
“The enema!”, she reminded me, a little agitation creeping into her voice.
“Oh, yeah, I’ve uh, kind of done one before.”, I replied
“Between my bladder being full of liquid and my rear being loosey-goosey you’re really putting your CT machine at risk, you know?”, I joked.
“Is that a yes?”, she repeated.
“Yes.”
My mapping appointment was in two days. As I was, unsurprisingly, fresh out of home enema kits, I decided to do some shopping. My wife, Jodie, and I had been doing the majority of our shopping online since COVID. Shopping online, we hoped, would limit our exposure, but in this case it would also allow me to discretely buy an enema kit. After viewing the purchase options I started laughing.
“What?”
I turned around to see Jodie hovering behind me.
“Check this out!”, I showed her my screen.
I can think of better ways to save a couple of bucks.
“… if I buy the Open Box item we can save $1.99!”, I chuckled.
She just kind of stared at me in horror for a minute.
“Please don’t.”, she replied, flatly.
“I’ll buy two, just in case.”, I smiled.
“In case you like it?”, she shot back.
“Ha. Ha.”, I replied dryly while clicking the “Buy Now” button.
After completing the transaction I looked to my corporate laptop next to me on my desk and frowned.
Ugh.
It sat there like an ugly scab; a reminder that I was now unemployed during the worst recession in history, during a pandemic, and undergoing cancer treatment. I had an urgent desire to ship it back to my ex-employer as soon as possible. I strapped on my face mask, pocketed a bottle of hand sanitizer, tucked the laptop under my arm, and headed to the UPS Store.
The UPS Store was crowded. It took about ten minutes before it was my turn to talk to the clerk.
“I’d like to return this laptop to my employer.”, I told her, handing her an index card on which I had carefully printed out the shipping address.
“How would you like it shipped?”, she replied.
“It’s not mine anymore and I’m not paying for it, any suggestions? What’s the most expensive, elaborate way to ship this thing?”, I joked.
“We could overnight it!”, the clerk next to us chimed.
“You can do better than that! Is there a white glove courier service, too?”, I smiled, adding, “I just got laid off a few hours ago. Have you seen a lot of computer hardware being, uh, returned?”
“Lots. That guy that checked out just in front of you had a whole box of electronics!”, she responded.
“Same here!”, a voice behind me announced. I spun to catch the eyes ( we were all wearing face masks after all ) of a man about my age motioning to a laptop slung under his arm.
COVID had not only made telecommuting the new norm, but the corresponding recession and subsequent layoffs had also created a booming business for the UPS Store.
“What do you do?”, he asked.
“Software developer….”, I replied.
“Oh? You’ll have no trouble at all finding work!”, he reassured me, “There’s lots of work for programmers!”
“I, uh, can’t start looking for work yet. I need to take care of some things first…”, I replied, not quite willing to open up to a complete stranger about my cancer, much less the six weeks of radiation therapy I was in store for, “It’s, uh … complicated.”
At this point I stared at a rubber bracelet on my wrist. I had strapped it there almost a year ago. It was bright blue and embossed with the words “Prostate Cancer Awareness”. While looking at it I recalled a discussion I had with my psychologist last week about looking for work while undergoing treatment for cancer. He reassured me that it was against the law to discriminate. However, he also warned me to not bring it up during interviews nor post about it publicly. He told me that hiring managers would likely look at my public profile and, although illegal, might inconspicuously reject my resume upon discovering my cancer. Oddly enough, in stark contrast to his suggestions, here I am writing about it …
“Sir?”, the clerk asked.
“Uh, yes?”, I replied.
“That’ll be $42.95 for shipping.”
“Is that the best you can do? Any chance you can round up?”, I replied.
“Unfortunately, no.”, she said smiling.
It’s always nice to end the day, and this one in particular, with good news, and this news came from my oncologist, Dr. Stewart.
“Your PSA is still undetectable.”, Dr. Stewart told me over the phone.
“Are you still planning on keeping me on Lupron and Zytiga for two years?”, I replied.
“Yes, you’ve almost completed a year, too. Congratulations! So, how are you doing?”, he asked.
“I’m doing good!”, I replied, “I’m still on a plant-based, low-sugar diet. I’m still able exercise every day and keep up with my kids, too. I’m a little tired all of the time, but I assume that’s just due to the hormone therapy that I’m on. Overall, I am still able to do everything I was doing before.”
“Also, I also just got scheduled for radiation, so I can get that underway, too.”, I added.
“Good!”, he replied. Although this was a voice call I could almost see him smiling on the other end. “And the plant-based diet? A while back you were complaining about how restrictive it was …”
“It’s delicious!”, I interrupted, “Tell you what? One night I’ll invite you over for dinner and you can decide for yourself!”
He laughed.
“You’re doing a good job, Doctor. Thank you!”, I told him.
“You’re doing all the work”, he responded.
He was wrong, and we both knew it. Fighting cancer requires a team. He had alluded to such almost a year ago during my first appointment with him when he referred to himself as my team “quarterback” who would help me navigate my upcoming treatments. My team has only gotten bigger since then – my family and friends are all on my team as well, and they are all helping me beat this thing called cancer.
“Dad! A box came from Amazon for you! It’s heavy!”, Kaylee screamed excitedly as she plopped a small box in front of me.
With the girls peering over my shoulder I ripped off the packaging tape, opened the box, and discovered that I was the proud owner of two enema kits. I opened one of the boxes to discover that each box had 4 treatments.
Uh….
What in the hell was I going to do with 8 enema kits?!?!!
“Dad, what’s an enema?”, Ashley asked me.
I looked over my shoulder to see that my girls had taken a keen interest in my new toys.
“Uh….”, I floundered. Sigh“… It’s, uh, a bottle of fluid that people stick up their, uh, butt to wash everything out.”
“Ewww gross!”, they screamed in unison, “Are you going to DO that?!?!!”
“I have to for my appointment tomorrow….”, I replied grinning at them.
“Does it hurt????!?”, they asked.
“Generally I consider the bunghole an ‘exit only’ hole….”, I said, and then, seeing a little too much amusement in their eyes, added, “… I have enough for everyone if you want to try it, too!”
“NOOOOOO! Gross!”, they shrieked, eyes bulging.
I clamped my ears shut as the girls shrieked and ran away, leaving me alone to read the instructions.
One upside to COVID is the traffic, or lack thereof. With so many companies enforcing a work-from-home policy, I made the 20-mile drive to my appointment at UCSD in record time and, only after parking, had I realized that I had only finished about half of the prerequisite 24 oz in my water bottle. I walked up to the payment kiosk, hastily chugging water, and entered a 10-digit code given to me during my phone call a few days before. Radiation therapy is a daily process that can extend well over a month. UCSD, like many hospitals, charges for parking, and as a consideration for patients undergoing therapy, offers free parking to those undergoing treatment.
As I walked up to the entrance of UCSD’s Moores Cancer Center I spotted a red 1984 Ferrari Testerossa parked in a valet spot. It being one of my favorite super cars from my youth, I ogled over it for a while, briefly forgetting about my appointment.
“Cancer has no bounds”, I thought to myself. Somewhere in that building was the owner, likely some old rich dude ( with good taste ), getting treated for a similar disease to my own.
Cancer sucks.
After checking in and sitting down in the waiting room I continued to sip my water and watched people come and go. A lady about my age with no hair walked by. An older man, seemingly perfectly healthy, chatted on his phone. A heavyset lady in a wheelchair rolled by. Due to COVID restrictions there were no guests allowed inside, just patients. Everyone here, including me, had cancer.
“Scott Vandervort”, a nurse announced from the doorway.
“That’s me!”, I said, hopping out of my seat.
The nurse told me that my appointment would start in about 20 minutes and wanted to make sure that I had a full bladder.
“I’m still nursing this bottle here.”, I tapped the bottle in my other hand, “It’s almost empty. However, I can top it off again for good measure.”
“Please. If your bladder isn’t full enough we’ll have to run the scan again. You also did the bowel prep as well?”, she asked.
“Yes…. it should be sparkling clean in there as of this morning.”, I said.
“I, uh, don’t have to do that for every visit do I?”, I asked. I already knew the answer, but wanted to hear it again for reassurance.
“No, just for the mapping scan ….”, she started.
“… because I have seven more!”, I interrupted, grinning.
“…. won’t be necessary.”, she confirmed.
After she left I let out a huge sigh of relief and continued to chug my once-again-full water bottle.
Precisely 20 minutes later the same nurse retrieved me from the waiting room and led me, bladder sloshing, to an exam room. A large CT machine filled the room and two other nurses were busily preparing it for my mapping.
“Do I need to change into a robe?”, I asked.
“Nope!”, one of the nurses replied, “We’re just going to have you lie down on the gurney, create some forms for your legs, perform a quick scan, and give you three tattoos to help align the machine for next time.”
“Can I pick the tattoos?”
“They’re the size of freckles and, honestly, none of us are very good artists.”, a nurse replied.
“So no pink dolphins?”, I joked.
“No.”
The whole process took maybe 10 minutes. The tattoos felt like pin pricks, no worse than a shot. Later that night while examining myself I could barely find them.
“Whatever you did to prepare, do it again next time. It was perfect. A+”, the nurse who had retreived me from the waiting room told me.
“Except the enema…”, I clarified.
“Didn’t you have seven more?”, she said grinning, “… but, no. No enema is required next time.”
She then handed me a card with a date on it, August 27th.
“Here is your first radiation appointment. Prepare exactly like last time. You did good!”
With the appointment over I was led to a small bathroom to drain the 48 oz of water that I had accumulated leading up to the appointment. The fact that I could still cram that much fluid into my bladder without leaking after having a radical prostatectomy was, oddly, reassuring.
During the walk back to my car my stomach started rumbling. As part of my cancer regimen I had been doing intermittent fasting. I looked at my watch and realized that I hadn’t eaten anything for almost 18 hours. I stopped mid-step as it occurred to me that my fasting probably helped with the scan, and would probably help with my radiation treatments as well.
“No food, no gas, right?”, I said to myself.
Nodding, I decided to continue the intermittent fasting through my radiation therapy to see if my theory was correct. In the meantime, it was time for lunch. I pulled my phone from my pocket and called my wife, Jodie.
“The mapping is all done. It was easy. Do you and the girls want vegan nachos from ‘Greens Please’ for lunch?”, I asked.
The cheering in the background was as good an answer as any. “Greens Please” is one of our favorite restaurants. Their Vegan Nachos are Scrumdiddlyumptious. I couldn’t think of a better way to wind down a hectic few days.
“Good! I’ll see you all in an hour! I can’t wait to show you my new tattoos!”, I said jokingly.
Take care. Stay healthy. Live life. Eat [Vegan] Nachos
My wife has been amazing throughout my cancer treatment. She’s not only been my biggest supporter, but my biggest advocate when dealing with insurance, bills, and doctors. For more go here.
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”.
Least convincing advertisement ever. I’ll bet they don’t get many repeat customers.
“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.
A twist there. A twirl there. And, done! We have a giraffe! ….. and now we’re going to shove it up your rear.
“…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.
The radiation oncologist, trying to convince me on the benefits of a balloon enema.
“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.
This is how I picture radiation therapy : a giant death ray pointed at my crotch. Fortunately, my mental image is far from the truth, or so my radiation oncologist tells me. Now if only I could convince my brain. For more go here.
My psychologist has been a big part of my cancer team. He loves dogs so I drew this to thank him for all of his help. For more go here.
Part of my “team” when dealing with my cancer is my psychologist. We first met months before I had my official diagnosis, when I was dealing with the anxiety, stress, and subsequent pain by what was then thought to be prostatitis. After our first meeting I walked out of his office completely unconvinced by what he had to say. It took several months before my stubbornness subsided and I reconsidered. Since then he has helped me better understand, well, me.
I showed him some of my comics during our last meeting and he was genuinely impressed and suggested that I draw more. So I did. This one is for him. As you can probably guess, he loves dogs. This dog in particular has some very good advice, too, although he might be a tad biased.
A lot of people came together to support my family and I during my daughter, Kaylee, and my respective recoveries from surgery. We were humbled by the number of people who brought us food, groceries, and offered their help. Thank you so much for your support, we are incredibly grateful and lucky to have such awesome friends, and family. For more go here.
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
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. Stay healthy. Live life. And thank you for your support!
“Well, the surgery is done. The only thing to do now is recover.”, I thought to myself while staring at the ceiling in our bedroom.
I had spent the better part of two days at UCSD having a radical prostatectomy to remove a cancerous prostate. Now I was laying in my bed at home, taking in the grandeur of our bedroom ceiling and contemplating life, or at least the next month or so of it.
“Well, I guess I better get up and get the day started.”
Getting out of bed required rolling back and forth until I could gain enough momentum to swing my legs out over the side of the bed while maneuvering around my catheter bag and hose.
“Are …. you okay?”, Jodie mumbled.
Whoops. Woke up the wife.
“Yeah, I just wanted to get up.”, I replied while looking at the catheter bag, “Although technically, with the catheter, I could lay here indefinitely…”
“… but then again, there is the eventual number two which the bag can’t …”, I continued.
“I’m up, too”, Jodie interrupted before I continued.
She rummaged around her nightstand a bit, got out of bed, and then walked around to present me with a small box.
“Ashley really wanted to give this to you yesterday, but with all the excitement she forgot.”, she said.
I opened the box, laughed, winced in pain, and pulled out a small, blue, smiling prostate.
“She thought you’d like it”, Jodie said, smiling.
“Oh, I do!”, I smiled back.
The clay prostate my daughter to replace the cancerous one removed during my radical prostatectomy. This one looks far happier than my own.
What follows is my account of what it is like to recover from having your manhood yanked out through your belly button, or as urologists like to call it, a radical prostatectomy. The recovery is humbling and far from easy. However, the humility and awkwardness of the recovery process resulted in some humorous moments which, fortunately, smoothed out the bumps.
Try not to laugh
“One incision….two incisions… three incisions….four incisions…..and five. Five incisions!”, I said proudly to Kaylee who was hovering over me, her enormous pink cast dangling from her shoulder. It was now three days post-op and I was feeling brave enough to bare my belly now that the gas had subsided a little.
Bloated, shaved, and bruised, this is what my belly looked like after my prostatectomy. For another twenty bucks I wonder if they would have shaved my chest, too.
“Hey! They missed a hair!”, I chuckled.
In preparation for surgery my belly was shaved smooth – except for a single solitary hair. Amusingly, the shearing stopped just below my chest leaving a thick mat of chest hair in stark contrast to the desolate plains below. Staring at it, I could only imagine how much it was all going to itch in a week or two.
“Look!”, I pulled up on it to show Jodie.
“Do you want me to shave it?”, she laughed.
“Ha ha ouch No! ouch Stop! OUCH!”, I laughed in pain.
Laughter might be the best medicine, but when you’re three days post-op the combination of bruising, incisions, and gas make it a painful endeavor.
Ironically, Jodie and I had chosen Kaylee and my discharge to introduce our girls to The Simpsons, starting with Season One. The early episodes are absolutely hilarious – and excruciatingly painful.
Eat your veggies
Almost a year ago I gave up meat, dairy, processed foods & refined sugars and switched over to a plant-based diet to help fight the symptoms of, what I would eventually find out, was prostate cancer. One of the less talked about benefits of being on a plant-based diet is that you’re seldom constipated.
Right. Where am I going with this?
Well, my surgeon warned me that, after surgery, it could take upwards of a week to drop a deuce. While I was recovering at UCSD my nurse, Dan, even joked with me that bowel movements were cause for a celebration, or pizza party. When my kids were smaller I used to read them a child’s book titled, subtly, “Everyone Poops” that, through cute pictures, explained that bowel movements and their precursor, farting, were not-so-subtle signs that the digestive tract was working again. I wonder if my surgeon and nurse had read the same book?
I don’t want to brag but I cleared this particular hurdle in 4 days flat with flying colors. My advice to anyone preparing for surgery? Eat your veggies!
You’ll need to get crafty
A support patch was literally glued to my upper thigh during surgery to guide the hoses of my catheter bag. It didn’t take long for the adhesive to start failing to the point where the support was literally, and painfully, hanging by a few hairs. The support is not something that I wanted to fail, either; if it did I’d risk the full weight of the catheter bag pulling on my … well, yeah, you get it.
As such, five days after surgery was “Arts and Crafts Day”. Jodie helped me cobble together an assortment of medical tape, large band-aids, and alcohol pads. After multiple failed attempts I ended up MacGyver’ing the support back into place with moleskin and medical tape. Unfortunately, I had to reinforce my handiwork daily with more and more layers.
Later, when my catheter was being removed my nurse offered to remove the support, which was now buried under layer upon layer of tape. However, after eyeing the layers of adhesive, matted leg hair, and irritated skin I quickly stopped her.
“I’ll, uh. I’ll just take care of that home … I think…”, I told her.
The support, sans tubing, remained glued to my leg like a barnacle for more than a week after my catheter was removed before I gained the courage to rip it off. Yeah, it hurt. My daughters learned some new words that day, too.
Healing in Quarantine, with Kids
My discharge from the hospital coincided with the beginning of a state-wide Coronavirus quarantine, the closure of my daughters’ elementary school, and a powerful urge to re-admit myself to the sanctity of the hospital. Just a handful of days into recovery it was obvious that my daughter Kaylee, who had broken her elbow and also had surgery on the day of my surgery, was healing much faster than I was.
“Kaylee, please be more careful so that we don’t have to go to the hospital again!”, Jodie said in a stern voice as Kaylee banged her cast against the wall.
“I’m a kid! Let me live my life!”, Kaylee yelled back with the hint of a smile.
Kaylee’s cast had become a battering ram. I could often hear her coming before I saw her as she dragged it along walls and bumped it into things. My sister-in-law, Jayme, sewed her a cool piggie sling, but she preferred to go without it. I felt sorry for her. There’s nothing worse than having a cast and none of your friends can get close enough to you to sign it. Kaylee, being Kaylee took it in stride.
I’m No Superman
Originally I had planned to work during my recovery and not take any time off. It took me two weeks and the urging of my wife and friends before I realized how naive I was. Trying to work while recovering from surgery was ambitious; doing the same during a global pandemic while learning how to homeschool my kids was borderline insanity. It took a music video to finally convince me. If you have cancer or a chronic disease and haven’t watched Jimmy Charles’ music video, Superman, you should. I applied for short term disability the next day.
Jimmy Charles song, “Superman” made me realize that everyone needs help, even stubborn old me. Jimmy makes frequent appearances at Prostate Cancer events.
Recovering from surgery is hard, but good food and help makes it a lot easier.
My wife is a genius in the kitchen, but even genius needs a break now and then. Fortunately, my sister-in-law, Jayme, set up a meal train to help my family and I with our recovery. To complicate the endeavor, Jodie and I eat only plant-based meals ( with the occasional sushi thrown in ). I was impressed by the number of families that took up the challenge and brought us home cooked meals.
When our friends weren’t bringing us meals, they were bringing us groceries. The Coronavirus had managed to turn the simple task of grocery shopping into an arduous and risky endeavor requiring masks, gloves, and space that neither Jodie nor I were willing to take on. Although we worked through the intricacies of Amazon Prime, it’s [lack of] Delivery Windows, and Food Shortages, it was our friends that kept our refrigerator full.
Jayme organized a “meal train” to help Kaylee and I recover from our respective surgeries. A few time a week a different one of our friends delivered a meal to our house for dinner. I am incredibly grateful for their help. For more go here.
The Uniball
My surgeon told me that to promote healing and reduce the risk of blood clots that I should get up and walk often, so I did. And, as standing proved to be more comfortable than sitting, I did a lot of that too. With my catheter bag in hand I would pace our backyard like a caged tiger, talk to my girls as they bounced ( Ashley ) or laid with her broken arm ( Kaylee ) on the trampoline, listen to Podcasts, and chat with friends and family on the phone. According to my iWatch I was walking over two miles a day and standing for eight after just three days of recovery. Good, right?
Probably not…
“So new development. Are swollen balls normal? I remember you said everything would be black and blue ….”, I texted to my friend, Pat, who had undergone the same surgery as me two years prior.
“TOTALLY swollen is normal”, Pat texted me back.
“This would be pretty hilarious if they weren’t, in fact, my balls.”, I replied.
“THAT is what I was talking about! I am 2 for 2 so far! The gas can’t even be explained and the swelling is grossly strange, but totally normal!” , Pat replied.
“Thank you for being there to share this awkwardly painful yet hilarious moment, Pat.”, I replied.
At this point my wife caught wind of our conversation and, wanting to help, fired off a message of her own.
“Can he ice his balls? Like after his vasectomy? I keep offering him frozen peas but he doesn’t think it will help.”, Jodie asked.
“It’ll help a little – not a lot though. There is a lot of fluid that will dissipate over time. It’ll probably take 1-3 days.”, Pat replied.
“In 1-3 days I’m pretty sure I’ll be able to sit on them like a pair of bean bags, Pat.”, I replied.
“Don’t sit on them.”, Pat replied.
“Lol. Alight, if you don’t hear from me tomorrow I rolled over in the night and they smothered me in my sleep. Thanks, Pat.”
Turns out having huge cajones isn’t manly at all – it’s just painful. Over the process of a week mine swelled into grapefruit-sized monstrosities and ultimately merged into one enormous uniball. It hung low, it swung to and fro, and it put me at the awkward crossroads of laughter, terror, and pain. Fortunately I found a jockstrap stuck to the back of my sock drawer. With a heave and a snap I managed to corral the beast.
I experienced a “little” swelling after my radical prostatectomy. Later, I was told it was due the 20 lymph nodes that were removed. For more go here.
I just need support
Around the same time that this was transpiring my sister-in-law, Jayme, sewed Kaylee a new sling to support her cast. The sling was made of fabric with tiny cute little pigs embroidered all over it. Kaylee, of course, loved it. Realizing that I also needed support, I fired off a quick text message to Jayme.
“Can you sew me a sling like the one you made Kaylee to support my ball?”, I asked Jayme.
“I could….”, she replied.
“He needs a soft cushion to elevate it.”, Jodie interrupted.
“Can you use this fabric so that it feels at home?”, I asked, sending her a picture of soft, luxurious, Chewbacca-like fur.
My sister-in-law, Jayme, is a fantastic seamstress. However, although I pressed her to sew me a sling to support my swollen goods, she respectively declined.
“I can sew a soft pillow, yes. Just give me the required dimensions.”, Jayme replied
“My ball is approximately 13” in diameter.”, I responded while trying to maintain a straight face.
“Holy F**** Moly!”, Jayme replied.
Wardrobe Malfunction
I had just donned my bathrobe when Ashley sidled up next to me.
“Dad, why’s the floor wet?”. Ashley asked me.
“I dunno, maybe I spilled a little water?”, I replied, motioning to the half-full glass in my hand.
“It’s not your bag?”, she asked, eyeing the half-full catheter bag I had just hooked onto the pocket of my robe.
“Nope. I’m incredibly careful with it!”, I smiled, proudly.
She shrugged and headed downstairs for breakfast. I glanced at my catheter bag, reassured myself that everything was Kosher, and then for reasons unknown, decided to swing it around like a purse as I walked out of our carpeted bedroom.
Hmmmmmmm.
“The floor IS wet”, I mumbled to myself.
It was then, after taking a closer look, that I realized that the little metal clip that secured the hose on the bag was unlatched.
Cursing, I grabbed some towels and carpet cleaner and started mopping up the sprinkles.
“Is everything okay up there?”, Jodie yelled from downstairs.
“YES! Great! Everything is great!”, I replied quickly.
After doing my best to clean up the evidence I made my way downstairs and into the kitchen for breakfast,
“Who wants waffles?!?”, I announced, attempting to put the mishap upstairs behind me.
“Yes!”, Ashley and Jodie replied enthusiastically from the adjoining family room.
“I don’t like waffles!”, Kaylee screamed..
“Waffles are just decorative pancakes, Kaylee. They’re made of exactly the same stuff!”, I replied as I started zipping around the kitchen, gathering ingredients.
“Yeeeeoow!”, I yelped in a shriek of terror.
“What! What?”, Jodie’s head whipped around from where she was sitting.
One of the hoses from my catheter bag had caught on a cabinet handle on the center island on which I was making waffles, causing a sharp and uncomfortable tug.
“Wardrobe malfunction!”, I winced, more in shock than in pain. After reassuring myself that everything was still attached I resumed making breakfast.
“Are you sure you don’t want me to make breakfast?”, Jodie, who was now standing next to me, asked.
“Yup, I just need to slow down. This thing is incredibly awkward and has hoses sticking out everywhere. I almost ripped off my …Uh”, I replied looking down at the girls who had joined us to see what the commotion was.
“What, dad? What happened …..”, they asked in unison.
Not ready for an impromptu “Sex Ed” I quickly extracted a waffle from the iron, cut in in half, and plopped the pieces down on a couple of plates.
“Breakfast is ready!”, I interrupted, handing the plates to them.
Catheter Removal Fail
After almost two weeks my catheter was becoming increasingly uncomfortable. I was looking forward to getting it removed – and was profoundly disappointed when it wasn’t.
On the big day Jodie and I literally “plugged” the kids into their tablets and phones before racing to my appointment at UCSD. Our friend, Lora, volunteered to be our virtual babysitter; we set up a Zoom teleconference between her and the kids before leaving.
As soon as I dropped my pants and my massive uniball erupted forth it was obvious this launch was going to be scrubbed.
“You have some pretty severe swelling”, the nurse said.
No shit.
The nurse was reluctant to remove my catheter. The swelling, he told me, could prevent me from being able to urinate and a new catheter would need to be inserted. I was under General Anesthesia when the first catheter was inserted and had no desire to experience the insertion of a second.
“I thought the swelling might be a problem”, I admitted, discouraged.
“I considered photographing them for posterity, but decided against it. Weighing them was an option, too, but the only scale that would have been accurate enough would be our kitchen scale, and I’m not sure I’d ever be able to use it again for cooking if I did so.”, I attempted to joke.
Later, I would learn that my swelling was atypical due to the lymph node dissection performed by my surgeon. Because my scans had indicated that my cancer had spread outside my prostate into at least one lymph node, he had removed it along with about twenty others. The missing lymph nodes would normally drain the swelling. As the lymph nodes were now incognito, the nurse told me that it would take longer for the swelling to go down. He urged me to stay off my feet for the next few days and scheduled another appointment three days later to try again.
I started pulling up my pants when the nurse stopped me.
“Uh … before you go, you’re scheduled for a Lupron shot, correct?”, he asked.
Rolling my eyes I sighed, “Yes”.
I dropped my pants again and waited for the inevitable shot to the butt.
The walk back to the car was brutal. Although the appointment left me disappointed and frustrated, I had developed severe chills and aches while waiting in the cold exam room. This was followed by chattering teeth, a headache, and by the time I was finally discharged, stiffness in my legs. Jodie lent me her jacket for warmth and her arm for support and we waddled, slowly, to the parking garage.
“I was told to walk as much as I could!”, I told Jodie through chattering teeth as she turned on the heater and seat warmer, “I was told the missing lymph nodes wouldn’t be a problem.”
“Yeah, I know.”, she replied.
When we arrived back home we discovered that the girls hadn’t budged an inch. They were playing Minecraft on their tablets with their friends.
“You’re back already?”, Kaylee shouted from her perch on the couch.
“We’ve been gone for three hours!”, Jodie and I said in unison.
“Have you guys even moved?”, I asked angrily while slowly making my way up the stairs.
Man I felt like crap. The chills had now progressed into a pounding migraine.
“I’m going to …. to take a nap, guys. I’ll be down in a little while.”, I said.
Shivering, I flopped into bed, pulled as many blankets on top of me as I could, turned the electric blanket up to 11, and quickly fell asleep. Over the next few hours my chills turned to fever, then back to chills, and finally, mercifully disappeared altogether.
There will be good days, and there will be bad days.
“Yesterday”, I told myself, “was a bad day,”
I was sitting on a small metal bench situated in the corner of my backyard that faced my house. Inside I could see my daughters playing at the kitchen table.
The last couple of weeks had been rough, but at least I was recovering …
“Or at least I thought I was….”, I grumbled while staring at my catheter bag.
At least the weird chills and fever had diminished. Initially, I was a little concerned that I might have contracted the Coronavirus, but the symptoms had disappeared as fast as they had come on.
“And I haven’t been around anyone other than my family”, I reassured myself.
And then it dawned on me. It was probably the two tablets of Bactrim, an antibiotic, that were prescribed to me on the day that my catheter was to be removed. The timing was perfect. I’d have to take the same antibiotic again for the next catheter removal attempt. If I got the same symptoms again I’d know for sure.
“If the catheter comes out…”, I said to myself.
And then it was everything all at once.
Prostatitis.
Cancer.
Hormone Therapy.
Coronavirus.
Surgery.
Pain.
Swelling.
Catheter Fail.
“Are you okay?”, Jodie asked me.
I looked up and turned to see that Jodie was sitting beside me. I wiped the tears from my eyes and took a deep breath before replying.
“Yeah. Yeah, I’ll be okay”, I said, “It’s just been too much. I think I’ve been trying to do too much. I’ve been trying to keep everything from falling apart when, in fact, the only thing falling apart was me.”
“I think it’s the … hormone therapy. It screws with my emotions”, I lied.
Jodie smiled and nodded. She wasn’t buying it, but was pretending to nonetheless. The kids, at this point, had joined us on the small bench.
“Dad, are you crying? Are you okay?”, Ashley asked me.
“Is Daddy going to be okay?”, Kaylee asked Jodie.
I took a deep breath, wiped off the rest of my tears on the sleeve of my bathrobe, looked up at my kids, and did my best to smile.
“Yeah. Yeah, I’m going to be okay. Everything is going to be fine. It’s just been a rough few days. I think I’ve been trying to do too much.”, I confided.
They looked at me with concern. I grabbed each of their hands and gave them a tight squeeze.
“Everything is going to be okay, I promise!”, I emphasized.
And it would be, too. I’d make sure of it. Over the next few days leading up to my follow up appointment I was going to do the impossible – I was going to do as little as possible.
Pop the Cork
My chills returned shortly after downing one of two Bactrim tablets that were prescribed to me for my followup appointment. The chills, as expected, progressed throughout the day into the same symptoms I had at my last appointment. Next time I met with my oncologist I’d let him know, in the meantime it was time to get my catheter removed – for real this time.
Just like last time we set the kids up on the couch, surrounded them with electronic devices, and set them up on a Zoom Conference. The drive to UCSD was a quick endeavor as well; with everyone confined to their houses there was, just like on our last trip, absolutely no traffic.
For round two I had a different nurse, an older jovial lady that I couldn’t help but like.
“Okay, ready? I’ll need you to lie down and pull down your pants.”, the nurse told me.
“But, we just met!”, I joked.
She laughed and got down to business.
The process of removing a catheter was a bit of a surprise. They literally pump you full of 250mL of saline, pull the catheter, and have you pee it all out. 250ml is uncomfortable after having an empty bladder for almost two weeks. It was delivered through five syringes – I know because I counted each and every one.
The catheter itself popped out with a flash of pain, followed by ( you guessed it ) 250mL of saline. It was a messy affair. I immediately tugged on a diaper, which caused me to dribble a little bit, followed by my shoes which caused me to dribble a little more.
I looked up at the nurse with a slightly disgusted look.
She told me that having a catheter had weakened my pelvic muscles. The dribbling would subside over time as my pelvic muscles strengthened and that I would need to do exercises, called Kegels, to help strengthen them.
I managed a smile, and then slowly, the smile got bigger. A huge weight had been lifted off my shoulders. I had healed enough to begin the next steps in my recovery and, hopefully, dealt my cancer a blow from which it would never recover.
Jodie and I left the exam room, found our car in the parking lot, merged onto the 56 East, and headed home to rejoin the girls at home.
I didn’t dribble the entire way.
Take care. Stay healthy. Live life. And thank you for your support.
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