Two years ago today I had my prostate removed as a result of being diagnosed with prostate cancer a few months prior. Surgery or no it was one of the crazier days of my life. The “novel” coronavirus had just made headways into the United States and hospitals were beginning to enforce visitation limits. Jodie wasn’t allowed to stay for my surgery, or even visit when I woke up. It was probably a good thing because my daughter, Kaylee, broke her arm while I was being rolled into the operating room. In some twist of irony Kaylee and I both had operations on the same day, and likely the same time. Jodie and Kaylee were so worried about upsetting me that neither wanted to tell me what had happened, although I eventually found out. It’s incredibly hard to hide a bright pink cast, after all.
We recovered together. We had lots of time to recover, too. What eventually became known as COVID took a lot away, but it also gave Kaylee and I a lot of time to do nothing. And nothing is exactly what it takes to recover from surgery – I mean surgeries, plural.
I’d like to say that was the end of my cancer story, but it wasn’t. Less than six months later I started radiation treatment. This was in addition to two years of testosterone-eliminating hormone therapy, too.
Fast forward two years to today. Today marks three months since stopping all treatments. I had my quarterly blood work done today and it indicated that my cancer is still undetectable. Better yet, my testosterone has returned to normal levels as well. This is all good news.
I’m still not in the clear, and honestly I may never be, but every good test results inches me closer to – what? A cure? No, not cure. My doctor has made it clear that “cure” is not in the vernacular for people in my situation. At best people like me get to stay in remission. Long, happy, grateful, normal, live-life-to the-fullest remission.
Last night I took my last dose of Abiraterone. Two 500mg tablets. Roughly one hundred dollars worth of high octane prostate cancer killing medication. I plucked them with care from my well worn pill case and stopped just short of tossing them into my mouth. Feeling bizarrely nostalgic I pulled my phone from my pocket, shrugged, and snapped a quick picture. Then I swallowed them with no more than six ounces of water. I had learned the dangers of chugging too much water before bedtime much earlier in my cancer journey, it ain’t pretty. I had learned many things over the last couple of years.
“Right? And, I took the last of my Abiraterone pills last night.”, I agreed.
Dr. Stewart then instructed me how I should go about weaning myself off of my last medication, a steroid named Prednisone. Unlike the Abiraterone pills I downed the night before, Prednisone cannot be stopped cold turkey. Abiraterone affects the adrenal glands. Prednisone is prescribed along with it to replenish what would otherwise be produced naturally by the gland. Stopping Prednisone too fast would make me feel lethargic and tired. I would have to keep taking it daily for two weeks followed by every other day for an additional two weeks.
“So, I’m not really off medication. Not yet.”, I said aloud to no one in particular.
“When will my testosterone start coming back?”, I asked, changing the topic.
It was then I learned that it could take 6 months or more and that the timeline varies from person-to-person. Fortunately age is a big factor, and I’m relatively young at 45. Two years without testosterone has had a remarkable effect on my body. Body hair – gone. Libido – gone. Grumpy and tired – check. A lack of testosterone has even affected my bones; this year I was diagnosed with early onset osteoporosis. Weight gain, man boobs, and muscle loss are the only side effects I’ve managed to sidestep, and I credit my plant-based diet and exercise regimen on dodging those bullets. Boobs are cool, just not on me.
“So, how will I know when my testosterone is returning?”, I asked.
Dr. Stewart told me that he would monitor my testosterone as well as other markers through monthly blood tests. As my body recovered the tests would be stretched out to every three months. My PSA, a marker used for detecting prostate cancer, would be tested at three-month intervals rather than the monthly tests I had become accustomed to.
“You should start noticing things returning to normal as your testosterone levels increase.”, Dr. Stewart continued, “Your libido will get better. Morning wood, maybe …”
“Should I call you if I wake up with morning wood?”, I interrupted, laughing.
Dr. Stewart laughed. I took that as a solid “no”.
“Hey!”, I asked quickly in an attempt to break the awkwardness of the moment. “Do you mind if we get one more picture?”
I’m not naïve. I know cancer, especially aggressive ones such as mine, have a tendency to rear their ugly head again – sometimes long after treatment. Dr. Stewart told me as much during my previous appointment and I’ve read about such reoccurrences on the multitude of forums that I follow as well. I’m a realist. I know that my treatment “vacation” and so-called “last pill” could very well be temporary. I know that I’ll be anxious every three months when I get my bloodwork done to check my PSA levels. I know that every time I have an ache or pain I’ll wonder if my cancer has returned. I know all of this, but for now I just want to be a cancer survivor. I want to take off the gloves and figure out how to be me again – not the cancer warrior, but just me.
And, if my cancer ever does decide to come back? Well, I kicked its ass before and I’ll just have to do it again.
“There’s a very high probability that your cancer will return.”
My 3-month checkup with my oncologist, Dr. Stewart had just ended. Jodie and I were waiting for what hopefully would be my last shot of Lupron before going on a hormone therapy “vacation” and I couldn’t get Dr. Stewart’s voice out of my head.
“What are the odds of …(pause)… you know what? Never mind. I don’t think I want to know.”, I responded.
And I really don’t. If someone told you that it would be nearly impossible to succeed at something, how hard would you try? I need hope and it’s friend, optimism on my side – even if it’s unfounded in reality.
To quote Jim Carrey’s character, Lloyd, in the movie, Dumb and Dumber: “So you’re telling me there’s a chance.”
But Dr. Stewart is right. Statistics don’t lie. So, for the rest of the appointment I refocused on what treatments I could expect if I were to relapse after being taken off of hormone therapy. Unsurprisingly, I would be put back on hormone therapy immediately. If my PSA level, a blood marker used to detect prostate cancer, were to exceed .5 ng/mL, a PSMA Scan would be performed on me. If the acronym PSMA sounds familiar it’s because Dr. Stewart wanted me to undergo one two years ago at UCLA when I was newly diagnosed. At the time the scan was going through FDA approval. Recently approved, UCSD had one installed just days before my appointment. The upsides of FDA approval are that insurance would probably cover it ( it was $3000 out-of-pocket two years ago ). The downsides are that I might not want to see what the scan has to show me. It’s incredibly precise and has the potential to pick up metastasis missed in my prior CT and MRI scans. Ignorance is bliss, right?
“And if my PSA were to rise and the PSMA scan were to pick up something? Then what?”, I asked Dr. Stewart.
“If there’s not too many spots we’d radiate them.”
“…and if it’s in a place that has already been radiated?”, I pushed.
“Then we’d have a longer conversation with your radiation oncologist. Dr. Rose.”, he replied.
“It’s like ‘whack-a-mole’.”, he continued, using an analogy.
“And we’d just keep hitting the new spots over and over?”, I asked.
“Yes, as long as the cancer responds.”
“And if it doesn’t?”
“Then we look at other therapies.”, he replied.
Dr. Stewart also told me that I had the option of staying on hormone therapy. I quickly dismissed the idea.
First off, my body needs a break. In my last post I wrote about how hormone therapy can cause bone loss. Well it can also cause muscle loss, fatigue, and liver problems. In addition to 3-month Lupron shots I’m also on Zytiga, another pill-based form of hormone therapy used for advanced prostate cancer, and a steroid, Prednisone – both of which require monthly blood panels. A month hasn’t gone by where I haven’t seen an abnormal reading.
Second, by staying on hormone therapy I’d never know if I was really in remission, or if the hormone therapy was just suppressing the cancer. No, it was time to pull the blocks and take the prostatectomy-ied, radiated, and “hormone-therapy-ed” “car” out for a drive and see what happens.
Third, hormone therapy becomes less effective over time. Hormone therapy works by stopping your body from producing testosterone. Initially, prostate cancer requires testosterone to thrive, but eventually the cancer adapts and starts producing it on its own. The clinical term for this is “Castrate Resistant Prostate Cancer”, or CRPCa. CRPCa is much more difficult to treat and the longer I’m on hormone therapy, the greater the chance my cancer will become resistant to hormone therapy.
( Knock! Knock! )
“Ready for your shot?”, my nurse asked from behind the exam room door.
“Yup! Come’on in!”, I replied, grimacing.
While my nurse donned her protective gear and prepared the shot I fumbled with the exam table’s foot pedal to raise it up to white-knuckled-grabbing-position.
“This is my last shot!”, I said, and then stumbled a little, “…. hopefully…”
“I hope so, too.”, she replied, smiling.
It was my seventh time getting stabbed in the ass with a horse needle full of Lupron. My first injection, a different but similar medication called Degarelix, was administered to both sides of my belly almost two years ago. This time I barely felt it at all.
The Lupron will remain in my system for three months. In December, for the first time in two years, I won’t receive a follow-up shot. I will stop taking Zytiga, too. A week or two later I will go off of the steroid, Prednisone, and then my hormone therapy “vacation” will begin. I am looking forward to the vacation, but I’m more than a little scared. too. Currently my PSA is .01 ng/mL, or undetectable. If my PSA were to increase it would indicate a recurrence; that somewhere inside of me the cancer is still alive and growing. It would also imply that, until there’s a cure, I’ll likely be fighting it for the rest of my life.
In the past I’ve referred to the whole cancer journey as a trip down a dark tunnel. It’s scary. It’s dark. And it seems to go on forever. As with any tunnel there is light at the end. Those are your family, your friends, and your supporters waving flashlights and urging you forward. The thing is there’s light in the tunnel, too. You just need to look harder for it. This light is from cancer survivors who continue to fight. Although they haven’t made it out yet themselves, they, too, urge you forward. They’ve been down the same path. The path forward is possible. It’s been done. You just need to follow the light to find your way.
So wave those flashlights, people – and tell you what, I’ll wave mine, too.
The Prostate Cancer Run/Walk didn’t quite go as planned. Due to COVID, the organizer, ZERO, deemed that it would be too risky for a large group of people, including those undergoing treatment for cancer, to meet. As such the event was made virtual. Instead of a walk around De Anza Cove, ZERO welcomed participants to walk on their own at whatever venue they wanted and to log their mileage online.
Disappointed, but still very much wanting to walk, I emailed all of my friends and family that had signed up and invited them to join Jodie, Ashley, Kaylee and I at Blue Sky Preserve in Poway. In the email I wrote :
I am almost two years into this cancer thing and I’m doing good. Good enough to walk the walk even if there’s no fanfare, music, or finish line. Because all the pomp and circumstance doesn’t really matter. All that does matter is kicking cancer’s ass, preferably in the company of the friends and family who have supported me along the way. Please let me know if you’d still like to join us.
44 people showed up.
It was awesome.
In all honesty I didn’t walk the entire 5k. I led from the rear with my mom and aunt. We decided to turn back as the others on our team reached the halfway point and met us on their return trip. Although we could have gone the distance it didn’t seem as important as it had been just an hour earlier. The walk was a success. We raised $4134 making us the second biggest fundraiser in San Diego. We were also the second biggest team. Even better, we brought attention to a nasty disease, and honesty, selfishly, gave me the best day I’ve had in a long time.
( Later that night )
“Did you like my rousing speech today?”, I asked Jodie.
We had just finished dinner and she was washing dishes in the sink. I stood next to her drying them with a dish rag.
“What speech?!?”, she exclaimed, diverting her attention from the soapy water to me.
“The speech!”, I insisted. “…right before we started walking. The motivational one!”
“All you did was blubber and cry behind your sunglasses!”, she laughed, raising an eyebrow.
“Yeah!”, I smiled, “That one.”
Thank you for your support. I hope to see you all next year! -Scott
A few months ago my oncologist, Dr. Stewart, scheduled me for a bone density scan to check me for osteoporosis, a potential side effect of hormone therapy. The procedure was non-invasive, painless, and produced so little radiation that the technicians administering the scan were able to sit in the same room with me. It was a novelty for me given the precautions taken for CT and MRI scans and radiation therapy. It took about ten minutes to scan my hips, upper legs, and lower back…
“Can I talk?”, I asked the technician seated across from me.
“Sure, just don’t move too much.”, the technician replied.
“Hey … so you’re not just scanning my butt to fax to your co-workers, are you?…”
“…because this thing you have me laying on really doesn’t look much different than a larger version of the copy machine at my office.”, I joked.
“No ( laugh ), of course not!”, the tech replied.
“I’m not sure I believe you…..”, I laughed, trying not to move.
A few days later I got the initial report : I had mild osteoporosis. The results warranted a visit with Dr. Hofflich, an orthopedic doctor, to go over the results in more detail and discuss potential treatments. It was a very educational meeting.
Hormone therapy weakens bones
Leuprolide ( or, “Lupron” ) and other types of hormone therapy can weaken bones over time. In addition some steroids can also weaken bones, particularly Prednisone, a steroid which is prescribed along with Abiraterone Acetate ( also known by the brand name “Zytiga” ). Dr. Hofflich told me that given my test results she would have, in retrospect, started me on a medication to strengthen my bones at the outset of my hormone therapy. However, as my therapy would be paused ( hopefully indefinitely) towards the end of the year, it wouldn’t make sense to do so so late in the game. I got the impression that, for older patients, a preliminary bone density scan would have been standard procedure prior to starting treatment for cancer. However, for a 43 year old in otherwise good shape I don’t think it ever crossed anyone’s minds – including mine.
The good news is that bones can recover
It’s a slow process that can take years, but bones can recover on their own. Dr. Hofflich emphasized doing “impact” exercises. These are exercises that stress the bones and force them to become tougher and stronger. Running, jogging, hiking … even walking helps. Weight training, too. In general alI exercise is good, however I was a little surprised to hear that Dr. Hofflich wasn’t a big fan of bicycling or swimming…
“Swimming and bicycling are great for building muscle and losing weight, but not so much for building bone.”, she told me. “These exercises don’t stress the bones enough.”
I mentioned to her that I was on a Whole Food Plant Based (WFPB) Diet and she wasn’t perturbed. She told me that as long as I take calcium and magnesium supplements along with my normal diet, I would be getting more than enough calcium. She did, however, emphasize that I shouldn’t take all of the supplements at the same time and that, instead, I should stagger the dosage throughout the day to improve absorption.
As part of my monthly blood panel, Dr. Hofflich ran some additional tests to see if there are any other explanations for my osteoporosis. The tests all came back negative. In a year she plans on running another bone density scan to reevaluate my bone density. In the meantime it’s more walking, more impact, and … bubble wrap.
Here are some character sketches for the book that my friend, Kevin, and I have been working on. Some characters turned out to be very different than Kevin had initially written in his earlier drafts. Tholoman, for example, was supposed to be a grizzled old human male. Now he’s a “young” elf. We thought by making him younger we could have fun with the chemistry between him and the young girl protagonists.
We’ve also been involving our daughters’, too. Kevin runs all his revisions by his daughter, Clara. As for me, when I was sketching the Bokziks, a group of sometimes-half-animal antagonists, I didn’t realize my oldest daughter, Ashley, was peering over my shoulder.
“Dad, you should make her a half-squirrel.”, she said matter-of-factly. “It’d be cool.”
“Yeah?”, I looked up, startled.
So, I erased the crude “were-dog” that I had been working on and in its its place quickly scribbled out a bushy tail, squat hips, and tiny legs and feet.
“Like that?”, I asked, unsure.
“Yeah!”, she smiled back.
So, yeah, collaboration is fun. Sometimes it might even take you somewhere you never expected to be.
Today my family and I held a bake sale to benefit Prostate Cancer Research and Awareness. My wife, Jodie, and daughters Ashley and Kaylee baked and decorated sugar cookies and cupcakes. They were a hit and brought in over $360 in donations! During the bake sale we even recruited a few new members for our team, “Team Vandervort”, which will be participating in the Prostate ZERO Run/Walk in San Diego on September 18th.
For more information on the Prostate ZERO Walk/Run and how to support “Team Vandervort” click here.