It has been a little over a month since I finished 45 sessions of radiation therapy for prostate cancer at UCSD. The radiation therapy itself was a follow up to a surgery that I had in March to remove my prostate. The good news is that I’m doing great! I’m about where I was prior to radiation therapy, which, although is nowhere near where I was before prostate cancer, makes me incredibly happy nonetheless. To put it another way, I can live like this. This week I had a follow-up appointment with Dr. Rose, my radiation oncologist to discuss my recovery and the road ahead.
For the foreseeable future my cancer ( or ideally, lack thereof ) will be monitored by PSA tests. If you’ve been following my posts you’ll remember that the PSA blood test measures prostate inflammation. A normal PSA score is below 3 ng/mL for men my age. However, since my prostate was surgically removed my score should be undetectable, or less than 0.01 ng/mL. If my score rises above that threshold it means that the cancer wasn’t eradicated and managed to survive.
“If I have a recurrence will it be in the same area in which I received radiation?”, I asked.
“No, usually the cancer will metastasize somewhere else.”, Dr. Rose replied.
“And if it does, can I receive additional radiation therapy?”, I asked.
“Yes.”, he replied. He then continued to list a variety of scenarios. Bone metastasis. Lymph node metastasis. Each scenario could potentially be treated with radiation, albeit with much shorter spans.
“So, no more 45-day benders?”, I reiterated.
“No.”, he shook his head.
“Good. I mean, you’re a great doctor … person … and all, but I hope I never have to see you again.”, I joked.
The big test will be after I complete my two-year course of hormone therapynext November. The therapy, also known as Androgen Deprivation Therapy, or ADT, has been starving my cancer of testosterone, which it requires to grow. Once I’m off ADT my body will start producing testosterone again which will provide fuel to any remaining cancer. The big milestones for long term remission are at the 5-year and 10-year marks. However, I’ll always be at risk of a recurrence.
“I, like most doctors, really don’t like using the word ‘cure’….”, Dr. Rose started.
For a doctor it’s got to be rough not being able to confirm the one thing that every single cancer patient wants to know.
“….yeah, I get it. You really just don’t ever know. It’s too bad, but I get it.”, I interrupted.
“So, is there anything I should be doing”, I asked.
For the last month and a half I have been driving to UCSD 5 days a week with 30+ ounces of water sloshing around in my bladder and an empty colon to get everything south of my belly button irradiated. Fortunately, my team at UCSD has been fantastic, and to thank them, I handed out bags of See’s Candy to everyone. As I was rolled into what I have affectionately dubbed the “glory hole” for the last time, I requested that they blast Oingo Boingo’s “Goodbye” during my final treatment. Patients are not not supposed to move while getting treated, but that didn’t keep me from drumming my fingers and humming along anyway.
“You guys have all been great and all, but …. I hope I never have to see any of you ever again.”, I teased my crew as they helped me out of the machine. After some awkward, socially distanced high-fives and elbow bumps I quickly made my way to the lobby.
For radiation therapy, at least at UCSD, there’s a huge brass bell in the lobby that patients are encouraged to ring on completion of their therapy. I was so excited to be done and to head home that I completely forgot to “ring the bell” and made a beeline for my car. My crew, busily eating their chocolates, forgot to remind me as well.
As I pulled up onto our street I saw Jodie chasing a blue balloon across our driveway. I stifled a chuckle and pulled into the driveway. Jodie quickly waved me back onto the street where I parked along the curb. After exiting the car and walking up to the driveway I saw why. She had our friends all write encouraging and uplifting phrases, with chalk, all over the driveway.
“I had planned to tape balloons to the garage door, too, but they kept popping.”, she smiled.
On the garage door she had hung letters that read “We are so proud of you”. After a couple of quick pictures against the sign Ashley and Kaylee ushered me inside.
“Open your gifts dad!”, they said in unison after plopping our new puppy, Maddie, in my lap.
In the first bag were several things, but it was a handmade stuffed orange tiger which I was immediately drawn to. If you don’t know why, I encourage you to read “Calvin and Hobbes”, a popular comic strip of the 80’s and 90’s which I grew up with. Earlier in the week I had hung a Calvin and Hobbes picture over the couch in my home office / fortress of solitude. My mom, unbeknownst to me, sewed me up my own “Hobbes” to accompany the picture. “Hobbes” primed the tears for my next gift.
“Can you read what it says?”, Jodie asked me after I unwrapped it.
It took a box of Kleenex and what seemed like forever before I could get my mouth to cooperate, and what finally came out wasn’t much.
“….I …. I …. really don’t know what to say.”
Jodie and my friends had created a collage. Each picture was a family member or friend holding a word. Together, the words read :
“One step closer to cancer-free! Keep kicking cancer’s butt! We love you and are proud of the strength and humor you have brought to this fight!”
Hours later and I’m still at a loss for words.
Take care. Stay healthy. Live life…. and surround yourself with people that love you.
A year ago today I had a doctors appointment that changed my life forever. The appointment was to go over the results of a biopsy that I had undergone the prior week to determine why my PSA level was in the high 70’s. Normal is under 4. My symptoms were similar to a urinary tract infection, or UTI, except they hung around for months. I had a constant urge to pee and, when I did, a weak stream that burned. My then-doctor and his predecessor both believed that my symptoms and elevated PSA, due to my young age, were due to inflammation, a condition known as Prostatitis. I didn’t have any reason to doubt either of them.
As Jodie and I were lead back to the exam room we passed my doctors office. He was pouring over a folder full of paperwork for I assume me, his next patient. He didn’t look up and looked very very tense. In retrospect it’s amazing how much information you can glean from a 5-second glance. A picture is indeed worth a thousand words. At that point I knew something was up.
“I’m sorry, but you have cancer.”, my doctor told me after settling into the exam room.
The rest of the appointment was a blur. I remember sound bites.
“All cores positive”.
At some point I rushed over to Jodie to keep her from falling out of her chair. She had passed out in shock whereas the diagnosis still hadn’t registered in my mind.
Somehow I managed to drive home and call my mom on the way. My gut reaction was to warn everyone in my family to get checked. Prostate Cancer can be hereditary and my grandfather had died from it in his early 80s. My mom took the news better than I thought, or did a great job suppressing her emotions. Both she and my wife have been my rocks throughout all of this.
It’s been a crazy year since. In March I had surgery to remove my prostate. Next week will conclude 35 rounds of radiation. I’m also on a two-year cycle of medications to starve my cancer ( and me ) of testosterone.
If I sound like a broken record, it’s for good reason. Prostate Cancer is cureable if caught early enough. If you have a family history of the disease, are African American, or ex-military you have an even greater chance of being diagnosed. Please get checked. It’s as easy as a blood test.
The best part? I’m alive and am I’m going to be around for a very very long time.
“You might experience some digestive issues”, has been the understatement of the month. While I’ve ( so far ) managed to avoid urinary burning and incontinence during my radiation therapy, my rear end has unfortunately taken the brunt of the side effects. How to persevere? Well, poking some fun by drawing comics helps a little. Diet, too, but it’s been a precarious balance between “binding” foods and foods with high fiber. And then there’s the ointments, Sitz Baths, and the timely purchase of an “electronic” toilet seat from Costco. In conclusion? Number two is number one in my mind and I’ll never take it for grated again.
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.
“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.
“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.
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.
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.
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.
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 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.
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.
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.
“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.”
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.
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.
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.
“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.
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.
I turned around to see Jodie hovering behind me.
“Check this out!”, I showed her my screen.
“… 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.
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!”
“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.
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.
“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.
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.
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
Three months after my radical prostatectomy and my PSA test is holding steady at .01 ng/mL, which is essentially undetectable. Also, and I don’t want to brag, but I’ve stopped wearing protective pads. I still keep them around, like small absorbent security blankets, but I’ve stopped wearing them on a day-to-day basis.
… well, mostly good.
With that, I’ll admit that I think my mind is trying to undermine my recovery; that it doesn’t want to accept that things are going, well, good.
I’ve started having some mild pain around my belly button where my surgeon made incisions. After a few ill-advised Google searches I initially thought the pain was the start of an incisional hernia, but in reality I think it’s more likely scar tissue.
I’ve also been experiencing mild burning in my urinary tract where my prostate used to be as well as an increase in urinary frequency. Again, after a few more ill-advised Google searches I thought the pain was due to an increase in spicy and/or acidic foods, but the pain has persisted even after cutting such foods from my diet.
Both ailments are inconsistent and the more I think about them the worse the pain gets – which leads me to believe the issues are psychosomatic. The thing is? I’ve been down this road before when I was dealing with an unknown illness that, unfortunately, turned out to be cancer. Initially I was diagnosed with Non-Bacterial Prostatitis, or Chronic Pelvic Pain Syndrome ( CPPS ) and sent to a physical therapist. Once I was diagnosed with cancer the pain miraculously subsided, even before I started treatment. The takeaway for me was the realization that the mind can and does cause physical pain, particularly when stressed and anxious. Unfortunately with cancer, stress and anxiety are par de cor.
Part of the problem is likely physical, too. During my recovery from surgery I’ve been doing Kegel exercises to help regain and maintain my bladder control. I’ve been doing a lot, too, which is good, but whereas the exercises are designed to strengthen the muscles that make up the pelvic floor, I need to remember to practice relaxing them as well. Chronically tense muscles, as I’ve mentioned in a prior post, can get sore and cause pain. If you were to flex your arm and make a bicep for several hours it’s going to start hurting, right?
I’ve since stepped up my meditation and mindfulness and, when I am doing my Kegels, I remember to tense and relax. So far it’s seemed to help.
No on Proton Therapy
I had a consultation with a California Protons last week. The facility was beautiful, if underutilized. The doctor was running late and as I paced the waiting room for thirty minutes I only saw a single patient, a young boy about ten years of age being rolled into treatment in a gurney. As a nurse rolled him through a couple of double doors it reminded me, sadly, that cancer knows no bounds.
Surprisingly, my consultation at the Proton Center had the opposite effect; it actually steered me away from it and back towards Photon therapy at UCSD.
What convinced me?
First, I learned that neither treatment is more effective than the other; both Proton Therapy and Photon Therapy are just as effective in killing cancer.
Second, I learned that the biggest difference between the two is toxicity, or collateral damage caused by radiation. The doctor I met with, who also works at UCSD, explained to me the different mechanisms used at both facilities. Photon, as I mentioned in my last post, is like a bullet with an entry and exit point. However, what I learned is that newer equipment, like that used at UCSD, greatly reduces toxicity by using a series of revolving, not fixed, beams. The beams converge on the tumor and, because they revolve around an axis, my body, the surrounding tissue, overall, gets significantly less radiation than it would with a fixed beam. Although Proton has no exit point, it still has an entry point, and because the beams don’t revolve, the entry point gets, arguably, more radiation than with Photon therapy.
Third, I realized that I’m terrified of balloons.
“So, what’s that advertisement for?”, I asked the doctor. Behind him and to the right was a placard labeled “SpaceOAR HydroGel”.
“Oh, you won’t need that. It’s a gel designed to minimize radiation damage. It’s inserted between the prostate and the rectum to protect the rectum from damage. You don’t have a prostate anymore so it’s unnecessary…”, he told me.
Phew. Dodged that bullet. A smile crept on my face.
“… but you will need this…”, he continued. He turned around, opened a drawer on his right, pulled out a small, deflated, plastic bag with a long hose attached to it, and held it up for me to see.
“…uh, and what might that be for?”, I asked, the smile disappearing from my face.
“It’s an inflatable balloon that we insert into your rectum prior to treatment…”, he replied.
“…. every treatment?”, I interrupted.
“…. yes, every treatment as well as during your initial scans to align everything. The bag is inflated …. “, he continued.
“…. in my rectum?”, I interrupted again.
“… yes, in your rectum to keep everything stable so that the proton beam can be used more precisely.”, he finished.
At this point I just stared at the balloon dangling from the forefinger on his right hand, my jaw dropped open.
“… for thirty treatments?”, I asked, terror creeping into my voice.
“Oh, about 37 including the scans.”, he replied.
“Yes”, he said, and after catching the terrified look in my eyes, he continued, “It doesn’t hurt. There’s even an entire club dedicated to it called the ‘Brotherhood of the Balloon’”.
I mocked a laugh.
Sorry, Pennywise, but there’s no way you’re going to convince me that shoving a balloon up my ass and inflating it isn’t going to hurt, red or otherwise.
“You’re, uh, not selling this very well you know.”, I joked, “Is the balloon used in Photon Therapy as well, or just Proton Therapy?”.
“No, UCSD doesn’t use it when administering Photon Therapy, However, they might if you’re interested though!”, he joked.
“You might even like it!”, Jodie chimed in.
Shit. I forgot about Jodie.
I had her conferenced in on my iPhone which was sitting on the seat next to me. Due to the Coronavirus restrictions she wasn’t allowed into the consultation.
Leaning over my iPhone I grumbled, “You first.”
Then I quickly turned back to the doctor.
“No, no, …. I’m good! Thank you.”, I smiled, realizing that my decision just got a little easier.
Lastly, there’s the cost. Insurance doesn’t cover the treatments, only the supplies and materials. The total bill would be between 10-15 thousand dollars which, although expensive, also includes an MRI, a CT Scan, and 30-40 balloons. To put it in perspective, UCSD billed my insurance company upwards of 10 thousand dollars just for an MRI so, relatively-speaking, it was a great deal.
If I still had my prostate I’d seriously consider Proton Therapy for its precision and reduced toxicity, but my prostate was removed four months ago. Also, due to hormone therapy and my low PSA score, my cancer isn’t likely to pop up on any pre-emptive scans like a big bulls eye, either. Aside from my lymph nodes, which will be specifically targeted, my doctor will be essentially taking a shotgun approach and blanketing my nether regions with radiation. I don’t see how precision really matters and, seeing how the radiation is administered, at least at UCSD, the amount of collateral damage is evenly distributed.
My 3rd Lupron Shot
“Pull your pants down a little, please”, the nurse asked me.
I was at UCSD again. I had just met with my oncologist and it was time for another shot of Lupron, the hormone therapy drug that had been effectively starving my cancer for the last several months. I craned my head over my back to watch as my nurse put on a hazmat suit, gloves, and face shield.
“How come I don’t get a suit, too?”, I joked.
She laughed as she pulled a largish syringe from a hazmat baggie and started rolling it between her palms as if she were making a snake out of Play-Doh.
“Why are you doing that?”, I asked.
“To warm up the medication and lower it’s viscosity”, she replied.
This was my third shot of Lupron. I still couldn’t get over the fact that I was being injected with something toxic enough to require protective clothing.
“Let’s do the left cheek this time. Bend over and put your hands on the exam table.”, she said, still smiling.
I winced as she pinched my ass, stuck in a needle, and slowly, oh so slowly injected the fluid.
“All ….”, she started.
Are we done yet ?!?
“…done!”, she finished.
“Do I get a lollipop?”, I exhaled, giving her my best attempt at a smile.
I unclenched my hands from the exam table, leaving 10 deeply imprinted sausages in the vinyl padding as an ominous warning to future patients.
“Nope, just a bandaid,”, she replied.
“Probably for the best.”, I agreed as she slapped a bandaid on my buttcheek. I had read a lot about how cancer feeds on sugar, so handing out lollipops probably wasn’t in the best interest of anyone.
“Please make an appointment for another shot in three months!”, she told me as I gathered up my stuff.
I was tempted to ask if UCSD offered customer loyalty cards and if the fifth shot was free, but resisted. As I waddled out of the exam room I recalled one of my first meetings with my oncologist, when he told me that I would be on hormone therapy for two years. I managed a smile as I realized that, as of today, I was now one-third of the way through treatment. Next up? Radiation – using Photons, at UCSD.