Synopsis: For over 2 years I fought a killer; cancer. I was in denial at first, then had to face facts, and bite the bullet. Tests, and more test, and then a diagnosis followed by radiation for a month and hormonal treatment for a year and a half. This is a no-holds-barred account of my ordeal, leaving nothing to the imagination. If you care to read it, you will find out what I went through and how I came out in the end a better person.
1 Prelude
It is never clear cut about the beginning - when the cancer starts eating you. Years can go by, as it slowly burrows into your entrails, not noticeable at first, just a little problem with urine retention, or an urge to go more often. Nothing serious. All explainable by aging tissues, urinary infections, who knows? The family doctor does a digital exam and thinks I should see a Urologist. In my case he happened to be a huge black man with fingers like sausages. He asked me who I was going to vote for, as he plunged his humongous fingers into my keister. “I will vote for Obama”, of course, do I have a choice at this particular moment in time?
Every man has a special relationship with his genitalia. Don’t let them fool you into thinking otherwise. We all have named our dicks. Mine is called … I will let that go for now. And we all want them to be superior in form and function. After all they are on display 24 / 7. Not literally of course, but figuratively. You can see if it works. We all imagine that ours are large in size and girth, and that the inner workings are just as polished and shiny as the outside.
Once while travelling in Costa Rica, I happened to enter into a road side bathroom used by truckers. Above the long trough like urinal was a longer mirror pointed down, so that the Tikas could compare their equipment. Not like us gringos who have to have barriers around the urinals to protect our privacy. The South American male is man enough to show off his equipment to his fellow man or men.
I remember in one public conference at the hospital when a south American man stood up and declare, “I am man enough to have this thing out of me now” , not understanding what this thing was about. Most of us men who have been diagnosed with prostate cancer want it out as well, so that we can all go back to being normal again.
If only it was that simple.
It was a long journey from discovery to recovery. One that taught me humility and how to make fun of myself. How to love again. Love is precious, more precious than life. Without love, life has no meaning. Love can heal all, forgive all, and makes fools of us all.
2 Before the storm.
There is always a preface. It starts someplace. A back story that explains where the hero came to be where he was at. I just didn’t get cancer, my genes didn’t express my code for cancer one day. It was a slow growth. I could feel it in me. I knew when I couldn’t pee the way I used. I knew when I would strain, feeling the ‘thing’ inside me pushing against my ureter. It wasn’t hypertrophied, it was the real thing. I ignored it, thinking it would go away or it was the slow growing kind of cancer.
And I was tired. I felt like something was taking away my mojo. I didn’t make the effort to even talk up a pretty woman. I could only smile at them vaguely. Like a ghost man looking at the living.
The opportunity came to go to New Orleans in the spring time. Like everything in my life, it was a an adventure. A snow storm was blowing in the Adirondack Mountains as we started our trip. The driving was treacherous. There were cars driven or sliding off the roads, yet our trusty 4 wheel drive got us through. That and our driving skills. We stopped to sleep near West Point, actually near the place which is most visited site in the US, the outlet mall of ……. Not that we were interested.
We continued south to Savannah Georgia and then near Charlottesville we stayed with our good friends from grad school. He was about to retire. And their daughter was visiting with her kids. He impressed me with his muscles; he was lifting weights. He seemed to be younger than me, even if we were the same age. I was jealous.
He used to be able to eat tons of food and never got fat. He was still able to pack it in. He still could. We talked of our lives, professional and private. He had found a position teaching that satisfied him. I had continued to freelance.
It is funny to see how our paths diverged and then merged over the years. Funny to find out how his kids, twins, have succeeded in life. Just as our son had been blessed with a successful career and a wife. Our wives had been pregnant at the same time. There was a parallel in life that we compared and rejoiced in.
We continued our journey, across Florida, where we encounter crackers and rednecks. My people. I was born in Florida, in the panhandle, Redneck riviera. It was spring break but we wisely avoided the beaches. It was warm, summer like. After the cold north we luxuriated in it.
Finally New Orleans. I was home. Time slowed down. My speech went into first gear. My heart opened up. I had long conversations with people that began with “how are doing? Where you at? Nice day. And continued for an hour.
Somehow I had lost this meter of talk, up North I was speaking faster and faster, and not saying anything. My body also craved this new state of affaires. Good talk and good food and good music. I spent 3 weeks drawing and visiting. But I felt tired.
3 I have the big C
Now comes the part where I find out I am sick. I am still in denial. I come back from New Orleans and continued to drag along as if I had a sick person attached to me. My family doctor says go see an Urologist, but I say to him, I want to have scan. I want proof. I am visual.
Arranging for a private scan, instead of waiting months for the hospital to call, I now had proof. I looked my disease in the eye. It had an angry look to it. I take the pictures to an Urologist, and he seemed dubious, he doesn’t believe what he is seeing. He orders a biopsy.
Now I have been afraid of this. I know what it entails, and I am afraid.
I take the medicine that evacuates my bowels. I go the room where they do the examine. The nurse is kind, and I lay down. She injects me with pain killers. The Urologist who will perform the examination comes in, an Italian nattily dressed, and looking like a Lothario. I remember him from a previous examination, but he has forgotten me. He has a medical resident in tow. She is young and pretty.
I am in the regimental hospital gown, my ass hanging out. I take up my position. I am at a loss because I have two woman who are looking at my ass. The Italian Urologist looks dapper in his surgical gown.
Let the games begin.
Shall I spare you the details? Nope, you paid your fair and you are going to get a ring side seat at my humiliation. The biopsy involves needles, big and long needles that are shot into my ass to get pieces of my prostate. I know what it looks like because I have illustrated the procedure several times (as a medical illustrator) which makes it worse.
In the middle of the biopsy my blood pressure drops, and I know I am going into syncope. The surgeon and his team do not. They stop and call for the crash cart - a code blue is called - and things start happening. People rush around, till I tell them I am having a syncope. That is all. I had become so frightened of what was going on that my body’s having to protest. Take 5 minutes, please. People get back to normal, and the young resident looks shocked; maybe she thought she was going to see her first patient die on her?
At no time am I feeling pain, thank goodness, but it is uncomfortable to be in a fetal position while the doctors are shooting needed into my nether parts. They return to the procedure. The Urologist gives the biopsy gun to the intern so that she can have some fun. I imagine myself in a shooting gallery on the Midway, and I am the prize.
Then it is over. The surgeons knows I am a medical illustrator so he gives me the bad news. My prostate is full of cancer and it has gone out of the capsule. I appreciate his sharing the information. I take my bleeding buttocks home (wearing a female pad for the blood) and I whimper a little knowing that there is no denying my new reality.
There is no doubt that I have cancer.
A week later I go to my urologist and he tells me, “we don’t see many Gleason 9s here.” He is finally convinced that I have cancer. He turned to me and said, “well I hope to see you next year, but I am not sure I will.” This only makes me feel even more depressed. He tells me to go to the English Hospital to see the Oncologist for treatment.
I tell the news to my son who immediately says I should come down to Johns Hopkins to be treated. Likely story. He is very concerned. My wife is concerned, But I am not. I am a fatalist and figure I have a 50/50 chance of survival. Actually I look at the survival rates for Gleason 9 cancer stage over 5 years and see that the survival rage is pretty low. But what the heck. Here goes nothing.
I go the Big English Hospital and find my self in a Big Waiting Room filled with women in turbans or ball heads. The room has two levels, all cancer patients. Depressing. l like a waiting lounge in an airport, the electronic boards that announce the room resemble flights to nowhere. I take a ticket and sit down. Not long after I arrived a bright young thing with a computer pad comes up to me and asks me if I wouldn’t mind answering a few questions. Why not? She is pretty and I have nowhere to go.
The first few questions are anodyne. Then she starts asking about my sex life. I lie. I feel I have been bushwhacked and feel uncomfortable. All for scientific research.
I look around and see that they are offering lottery ticket to win a car; I wonder if the winner will be alive to drive it. My number comes up, and I wonder around the empty halls trying to find the where I am supposed to go. It is a bit like the movie “the shining”. Creapy. Finally I see a room and go in to find myself with cancer patients getting chemo. That is depressing as well. I want around for a few minutes till I figure out I’m in the wrong place. I retrace my steps back to the waiting room to purgatory.
My oncologist hails me. I have no ideas how she knew who I was, unless I had the road kill look in my eyes. She finds an exam room and we sit down on a bed - weirder and weirder. Very business like she writes upside down - for her - on a sheet of paper what I will go through in the next few months. She laughs nervously when she says I will have secondary effects from the hormones, like women have, she doesn’t paint a pretty picture. I get up and that is, literally, the last time I see her.
I go to see my family doctor because my blood pressure is off the wall. I have heart palpitations. He gives me more heart medication. He tells me a friend of his has to drive to the hospital for cancer treatment and that is the roughest part of the care. I will be driving in winter. Not something I am looking forward to.
4 The change that saved me.
My wife is worried.
I am worried.
And our son is worried.
I do not feeling comfortable with the thought of going to this huge English mega hospital which is miles away, reachable by metro or by car, but still a slog in winter. I am not comfortable with my doctor.
I am freaking out.
So when I hear about an open house at the French hospital which is a mile away from where I live, I decided to go with my wife. I am game. Looking for hope. And finding it.
We walk into the French super hospital, the pavilion devoted to Prostate research. There are massage tables in evidence, there are stands featuring nutrition. There is a spread of nutritious food. Chairs to sit, conferences to attend. Visits to the research laboratories. The head doctor is there, you can just go up to him and talk to him, as well as his colleagues.
It is heaven.
We go into the conference room and a current patient recounts his experiences of treatment. It is not an easy story to listen to, but one of courage and fortitude. The head of radio oncology speaks, and then other doctors and then the head honcho. And they welcome questions - unheard of. One fellow brings the house down when he asks, “if I have prostate cancer can I still make love?”
I want to get into this program, I need to get into this program. I email the doctor and explain my problem, that I an already in a track to be treated at the English hospital. Can I change? Of course you can. Hallelujah! I am ecstatic. Now to the nuts and bolts.
I have to have hormone treatment, but that is already started, and is given by injection every three months in the gut. It is a huge needle. The Filipino nurse says it is probably the largest one they use. Ouch.
And the side effects.
Because the hormones decrease my testosterone production I go into ‘menopause’. For real. Hot flashes and night sweats, and mood swings. In the beginning I receive two types of hormones, so the effects are even greater. I can now appreciated what women go through.
There is another side effect. Hormone treatment is also known as chemical or medical castration. What violent rapists under go to get rid of their sexual desires. It does. To a degree.
5 Where I find out what I am made of.
Waiting. I hate waiting.
It seems like hours and days and weeks and months of waiting. I meet my oncologist. I am in love. He is the sweetest young Jewish doctor. I say to him just before I leave the exam, “Here goes nothing” and he is mystified, he has never heard the expression. I try to tell it means, ‘what the hell’.
He wants me to start the treatment over Christmas holidays and I say no. I want to see my son, and have some time before the Big Show. The radiation treatment. We fly down to to stay at our kids place in Baltimore. We have a bitter sweet time; I find my son treats me as if I am on tinder hooks. I must look like hell. I feel the love.
When we return home, I start my treatment.
I have a scan. Several actually. Then I have to have the tags placed in my prostate. Turn the page if you have a queasy stomach.
They take me into a lab, the young doctor and her nurse, wait for me. I have had the enema so I am good to go. They place me in stirrups in the Lithotomy position. They shoot me with pain killers. The take this huge spear like thing - 6 feet at least - and shove it up my ass ( the mother of all dildos); an ultrasound device. I ask to the doctor just before she puts the first needle in me, “ does the prostate have nerves?”
Yes it does!
I am good at pain. I can take any kind, except emotional pain.
I get it in spades. 4 times. I think the needles are going to come out my throat.
It is over at last. The doctor smiles with satisfaction, I am happy she is happy because I know that she is the best, and she is enjoying her work. I wish I could say the same.
Female pads again for the bleeding. Now I have foreign matter in my body, that will stay for me till I die. I ask if they will set off the alarms at the airport; only if they had used the gold markers. I guess I am lucky.
Now I am ready for the next round. I walk to the hospital each day for my treatment.
Radiation.
Instructions are simple, drink gallons of water an hour before the treatment and don’t urinate. Easier said than done. I saw one guy who kept pissing him self silly - failed. The other men just hung their heads and kept it in.
We met waiting for our time with the ‘machine’. You just kept your thoughts and eyes to yourself. No chit chat, no gossiping. Man up. She was waiting for us behind her lead doors. We arrived for our appointment, we dressed in our gowns, and then waited our turn. The doors opened up and the nurses and technicians greeted us with smiles. They rotated turns. But I got to know a few of them, exchanging pleasantries, and they were almost always pleasant. Just one nurse, who was older, seemed out of sorts. I think they took pity on us.
It isn’t difficult to have radiation treatment. I mean you simply lay down, and they technicians place you in position on the cold table. And they leave you to your sort. The machine comes to life, clicking and whirring, like out of a science fiction movie. Then it gets going, they tell you over the intercom to hold still. The machines makes some more sounds and it is done.
I realized that it wasn’t as simple as that when after a couple of treatments the cd player they use to sooth the patient went on the fritz. It has succumbed to the radiation. Then I knew it was serious. After a couple more treatments, I was getting them 5 times a week, I went out an bought them another cheap cd player.
The nurses kept asking me how my bowel movement were, how I was feeling, etc. I was ok until one morning, after walking the mile to the hospital with a full bladder I had the shits. I went on the machine and they couldn’t find my prostate, or it was in the wrong place. I had to go, I drank more water, I went on the machine, no good. I spent 4 hours trying to get my guts in the right place. I ended up being the last patient.
From that day on, things got worse. I had urine retention, burning on urination, felt like shit. I must have looked like shit too. The radiation was killing good and bad cells. I felt like I was dying by degrees.
Nausea, loose bowels; you name it. My oncologist prescribed pills for the pain on urination. I saw him once a week. He was a Mensch. I told him was a “schwere man”, a hard man, that I could take it.
Towards the end, I couldn’t. Only because my son encouraged me, and I had my wife and friends helping me, could I endure.
Then I had a month after the treatment when I still had free radicals bouncing around my body.
My body. I was thin. Waisted from the radiation. Weak and confused. I discovered liquid protein drinks that I could keep down.
6 Aftermath
Wait.
More waiting.
A month of waiting.
Then a scan and a blood test. Now the hospital was in full Covid alert. Now it was serious shit.
Wait again for the results.
My doctor calls me ecstatic, “your PSA is nominal, you are ok! And the scans show no metastases.”
I cannot believe it, I am in shock. I am in remission.
But I feel dead.
Not literally, but physically. I am tired, I can hardly walk. So I walk, at first just around the block for 15 minutes. Each day I take a little longer.
I discover an on line journaling group which keeps me awake and thinking. Each morning I can’t wait to have a prompt to write about. It saves my life.
Just as I finished my radiation treatment on February 2020, I receive a call from the other English hospital asking me to come in for radiation treatment. Too late. And I realize that I would have had to stop the treatment because of Covid 19. Lucky me. I made the right choice.
Walking and writing my self back to good health. I go back to the gym and start working out on the machines. I get a personal trainer to help me out. My muscles are coming back. I still take the hormone treatment, I still worry about bone loss and still have hot flashes and night sweats. But less.
We sell our country house which entails a lot of work and hassle. We go on vacation to Greece. We are living.
I am alive.
6 moths after treatment another blood test shows that I am still nominal for PSA. A year and a half later I am still clean of Cancer.
It has been a year and a half since my last Radiation, and months since the end of hormonal treatment. I am OK. I have taken up exercising and weight lifting. We have adopted a husky puppy who keeps us busy.
I have hope.
I thank everyone who helped me on this journey, especially my wife and son and daughter in law and the people at the CHUM hospitals.
Funny Addendum
I really am a funny guy despite all the dire things I write. Every time something bad happens I try to see the bright side. I am always making jokes and odd comments.
Take for instance my cancer treatment for prostate cancer. Not a funny subject, but there were moments of mirth. After my oncologist had explained to me what was going to happen I turned to him and said, “Well here goes nothing”. He was taken aback. He had never heard the expression, being Swiss, and I tried to explain it to him.
That broke the ice. I told him I was a hard man in my poor German; he looked at me with doubt thinking this guy must be crazy, thinking he could outfox cancer. We had fun talking about my treatment, as I suffered through it, and in the end as a token of my appreciation of his care I gave him a painting of mine he had admired. He was beside himself when he called to tell me I was 'cured'. Though with my knowledge of the disease, I thought he was being over optimistic. My family doctor who has treated me for over 30 years also was reserved, and he told me, 'Lest see in 5 years."
There were interesting experiences...
One of the funniest moments was when I was attending a talk by a doctor to patients and family about the disease treatments. He told us that hormono-therapy was one of the ways to treat the disease. And a woman - who must have taken a wrong turn - put up her hand and told us that 'You shouldn't use hormones to treat cancer'.
Up to then most of the men had been patient with her comments. Finally one man told her, "Lady, you are in the wrong church."
Subtle. I couldn't keep from laughing, because she must have thought that we were talking about breast cancer ( she really was in the wrong place).
In the dressing room, during my radiation treatment, I would meet other men who were waiting or leaving. We never spoke. We were all dressed in our examination gowns, that looked like dresses, with our asses hanging out, looking ridiculous. What I imagined the waiting room for hell looked like. We were all subdued and quiet, a bit like men at a strip show, sitting around quietly locked in our own thoughts. Men are not verbose. Compare this to a male strip show for women where the men take it off. Yes I brought my wife to one in New York City for her birthday - never again.
At the beginning of my treatment I first brought a combination lock for the locker provided for our clothes but somehow I forgot the combination so they had to cut it off. How embarrassing. From then on I just kept the clothes with me. Who was going to steal stuff in a radiation zone?
They had a cd player they put on during treatment to take your mind off the whirring of the machine. It finally bit the dust. I guess the radiation was too much for the electronics. Image what it was doing to me? I went out and purchased another one. The nurses and orderlies appreciated that. We would joke and laugh, they were a happy bunch. They frequently rotated to other cancer treatments; it must be hard on them.
On the last day I was feeling very poorly; I had enough of all the side effects. So as I got off the table for the last time I turned to one of the nice nurses and told her, “I like you a lot, but I hope I never see you again.” (Meaning Professionally) She laughed.
That was a week before the hospital went into lockdown and they stopped all radiation treatments.
