Cancer
Nope, this is not my attempt at reading your horoscope. It’s not fun, and it’s real in the way horoscopes and astrology never will be.
Let me expand on this.
I believe this is The Scariest Word in pretty much most languages on the planet. It’s the word that we dread when we hear through the grapevine about acquaintances who have been diagnosed, are battling with or worst yet, died of this disease. Or encounter with profound grief and despair when it is used in context with close friends, extended family, parents and worst of all — children.
But nothing compares to the whirlwind of confusion and panic when it is used to describe a condition that you yourself have.
My specific and explicit experience with this bit of news was jarring, unbalancing and numbing. What I discovered in fact is I actually was experiencing grief, and that seemed really very confusing to me as I really believed I would be a much more positive individual. I’ve gone through extremely difficult times before and come out okay or better than before, but this word and the connotations of it immediately inspired feelings that would be best described as stage 1 (shock or disbelief) in the grief cycle:
The seven emotional stages of grief are usually understood to be shock or disbelief, denial, bargaining, guilt, anger, depression, and acceptance/hope.
Now, to give context for the circumstances by which I found out that I had cancer (in this case, prostate cancer) I need to provide the story of how it was discovered and communicated to me — it was an example of really bad doctor/patient communication that had me feeling really alone and forsaken at the very start of the journey down this path.
In March 2021, I scheduled an appointment with a new Primary Care Physician (PCP) here in Orlando, Florida. We had just moved here four months earlier from Washington State (20 years) via California (2.5 years). Covid had everyone including myself and my wife working from home, so there was no real point living in one of the most expensive regions (San Francisco Bay area) when we didn’t need to go to the office. My new PCP sent me to get blood work done from the local lab, and one of the results in the set is something called the PCI — it’s measuring the markers in your blood for prostate issues. Being 57, it was expected to be higher than for a 20, 30 or 40 year old, but my reading came back slightly elevated at 5.8 where the maximum should have been just below 4.0. It wasn’t a strong red flag, but my PCP being really good set up a referral with the Urology office in the same medical group he was part of. I like my PCP a lot and even more now that his caution actually might have explicitly saved my life.
Now I’m going to withhold names of individuals and medical groups because I don’t want to put myself in any kind of legal or libel jeopardy. Not that anything here isn’t true, but Florida is one of the most litigious states I’ve ever been in and I don’t need to fight anything with regards to this set of events.
My experience with the Urologist though — a totally different experience. I don’t remember ever having to wait 90+ minutes after the scheduled time to get into the exam room before, but I learned after the first time that is a typical backlog of this clinic. I should have then decided to go to another urologist but until later in this adventure I didn’t really think I was going to be coming back anytime soon. The initial exam found an enlarged prostate, by about 2 cm (<1 inch) which because of the actual size of a healthy prostate was now a concern.
A biopsy to be scheduled with assurances from the urologist that it would be under sedation in a procedure room so that I wouldn’t experience any discomfort. Instead, the people who book this stuff scheduled it to be in an exam room without any sedation. Going through the procedure was an experience — the prosthetic that contains the lancet that takes the 12 pieces of your prostate looks like a giant penis — no exaggeration like porno movie proportions. No sedation and no local — they poke the lancet through the colon wall into the prostate and each time you feel it like a hard pinch. To get 10 of the 12 samples (I stopped at 10 — I couldn’t do any more than that) took roughly 25 minutes laying on your side on an examination table in a cold very air conditioned room, and once I stopped the procedure the doctor commented that most people stop after 7 or 8 in this scenario. This was another red flag that should have caused me to run, but I chose to go through with it as this was something that needed to be investigated asap. No talk of cancer just yet, the biopsy was supposed to take it out of the equation…
Just shy of a week following the biopsy, I got a notification on my phone from the MyChart app the medical organization used for communications with patients. My results were in, and given that no doctor or nurse tried to call me to go over them before I received them I believed it would be good news…
10 out of 10 specimens showed strong evidence of cancer. I tried to reach out to my doctor and left messages through the app and on the phone — no response. My follow up appointment was set for that Friday morning and between 4 pm Wednesday and Friday I didn’t receive one acknowledgment or message from anyone in the practice. Sitting in the waiting room on Friday for my 10 am appointment, it wasn’t until 12:30 pm when we were ushered into an exam room for the consult…
In the meantime, between Wednesday and Friday, Dr Google was my source of information. Dr Google is scary. Very scary. My wife is an RN and graduated from Duke recently as a Nurse Practitioner and she also dove deep into her resources to investigate. Pathology scored my cancer as a Gleason 7 — moderately aggressive but not life threatening at the moment. One of the specimens was close to where the nerve branch traversed the prostate, and Dr Google said if the cancer got into there that would be a whole lot worse as it would then have a transport anywhere in the body. The Doctor on Friday didn’t really tell us anything to make us feel better, and in fact was somewhat put out/offended when we suggested we had been researching this and want to get the realistic prognosis not just a happy path one. No satisfaction was received here and it seems that none was intended…
So in that time as well, I went through the first five of the stages of grief — shock, disbelief, denial, bargaining (making deals with myself I guess, if I live then [x] or if I’m going to die then [y]) and guilt. Why did I deserve this, what did I do to cause this to happen to me and is it too late for me?
Prostate cancer happens to every man if they live long enough. In a normal lifetime though, about 13 in 100 are diagnosed with prostate cancer with 2–3 of them dying of the disease. Treatment includes hormone therapy that shuts down testosterone production that feeds and grows the cancer; Active surveillance which is monitoring your PSA levels and treating the symptoms when they appear; Radiation Therapy — getting bombarded by high intensity focused radiation that kills the cancer cells in the organ; and finally Prostatectomy — removal of the organ and surrounding tissues. What treatment is recommended depends on what stage your cancer is in, and what the Gleason score of the cancer is estimated to be.
Mine was classified as stage 2 — it was still inside the prostate but as much as could be determined it hadn’t left the organ, which meant that we remove it and with luck I’m cancer free. The experience with my first urologist though was profoundly bad, so we searched out another one in the area — my wife reaching out to mentors, former colleagues and various doctors in her rolodex and many recommended a Dr V. Patel, who is the resident expert in prostatectomies using a machine called the Da Vinci — minimally invasive robotic surgical machine that inflates your belly with gas, and arms go into 6x1" holes in your abdomen with the surgeon guiding the tools from a control console sort of like a video game or a crane operator… the analogies might not be quite accurate but its just intended to give a visual of what it appears to be.
New urologist scheduled a large battery of tests and scans — CT, ultrasound, MRI, ongoing additional blood work… and got the original pathology and samples from the biopsy and sent to Johns Hopkins up north. He prescribed a hormone called bicalutamide to shut down the testosterone factory and potentially shrink the tumor. Then we scheduled the surgery — which happened this past Friday Sept 17. 8 weeks from our consult to surgery, which although I was made to feel very much better than before, I still had sufficient time to go through anger and depression before achieving acceptance/hope…
The night before the surgery, just as I was signing off from work I received a call from my urologist’s office. The second opinion came back from Johns Hopkins and their assessment was my tumor is a Gleason 9. Aggressive, fast growing and needing to be removed right away. This shot me back a bit in my grief but knowing it would be removed the next day I got back to hope again. There is a lot of temptation to fall into despair and I did have worries that it increased the chances of bad news following the surgery — the chance it spread to lymph nodes and through the limbic system seemed very possible given this new information. But having lived this knowledge now for almost four months I just chose to focus on the task at hand, go get this thing out and deal with things as they come up. Focusing on the negative is counter to achieving good health and a better longer future.
Friday morning, check in at the hospital at 6 am and get into pre-op. IVs and cardiac monitors deployed on my body, and as they get ready to wheel me into the Operating Theater the happy juice is slipped into my veins and out I go.
Waking up in post-op (NICU) I had the feeling of intense pressure in my abdomen, the phantom need to poop (the catheter balloon in the bladder puts pressure on your colon, causing the sensation) and a headache the likes of which are epic. Trying to continue my sleep the oxygen monitor kept alarming as my breathing would get very shallow due to the anesthesia still lingering in my body. Coughing and indeed breathing at all was painful from the incisions in my abdomen, and the catheter going up the pee hole in my penis kept me at bay. The pressure in my belly and on my bowels affected my back — spasms in my lower back were also very painful and didn’t go away until the next day. After what felt like an eternity, I was moved to a private room where convalescence really began.
My first attempt at walking, which is needed to both get your bowels moving again, but also to eliminate the gas that remained in your body post-op, the walking was pretty pathetic. Made it a hundred feet or so before getting really light headed and needing to be wheeled back to my bed. They also brought this thing called a spirometer — its a thing that measures your lung capacity by having you breathe slowly through a tube and measuring the volume of air you inhale. That was surprisingly difficult to do — the tube that breathes for you when you’re under sedation also collapses the lungs slightly when it gets taken out, and while its there some of the boogers/phlegm wick down into your lungs which also reduces capacity. You breathe through this to expand your lungs, and also to cause your body to absorb the fluids/phlegm that got in there. Coughing was necessary but profoundly painful, the requirement that I use it 6 times/hour was awful. I was also directed to walk 1 mile/day — shuffling my feet down the hospital halls at all hours of the day first with assistance, then independently. Saturday morning was discharge time, going home about 28 hours after arriving to complete my recuperation there.
With each passing day (and I am officially on Day 5 post-op writing this) the pain got more bearable, my mobility improved and I was capable of doing more before crashing/falling asleep. I’m back at work sort of part time — working from home has benefits especially in times like right now where I can convalesce but still keep abreast of those projects I manage. In my follow up appointment the catheter was removed, and even though I need to wear Depends as bladder control is completely shot for a little while, I wouldn’t trade that for the extended and healthy life I can live going forward, fingers crossed!
A note though: I went back yesterday (9/21) for my post-op follow up and to remove the catheter, but the main item was to go over the pathology of the removed prostate and lymph nodes. As noted earlier, the updated analysis had revised the Gleason score to 9 — and the pathology on the entire organ confirmed that score. Fully 20%+ of the organ was cancer but it was also confirmed that the cancer had not gone outside the margins — it was fully contained inside the organ and so removing it also made me cancer-free! The lymph nodes came back negative for cancer — nothing spread! When I consider the potential for what might have been a really awful and long road that could have been, especially had I waited longer to find a PCP and get back under doctor’s care — well I might have been in the 2–3 of 100 statistic who died of this. That fact is eye opening and encourages changes in lifestyle, reducing the factors that contribute to higher chances for any cancers. My father had a triple bypass when he was 69 years old and he lived until he was almost 92 years old but had to really change what he ate, how he lived to allow that to happen. But he got to live long enough to meet and enjoy his grandchildren, and see some of them grow into adulthood, which can’t be undervalued for either himself or his grandkids. I now have that opportunity given back to me.
How I would like to finish this is to use my example to encourage other men to ensure you get checked regularly and thoroughly. I didn’t feel anything that would have led me to seek medical attention and probably wouldn’t until it was way too late. Women — you have annual mammograms and everyone needs to get colorectal exams by the age of 50 — don’t skip out on those. I’ve got old friends and close friends who have experienced cancer themselves in its’ various and diverse forms, with some losing their battles but many others winning and continuing to be vigilant during remission to fight the battle again if and when it comes back. Cancer is a truly scary word in any context, but the real fear is when it’s applied to you and you’re the one who needs to find the strength to win the war. Catch it early and your chances to win improve exponentially — don’t delay!
Thanks for reading — I really appreciate the time you invested reading my story. I will really be happy if it encourages you to follow up with your own health, go and be well!!