The disease is killing me slowly
Editor’s note: Jack Kurtz, an award-winning international photographer now living in Des Moines, Iowa, was diagnosed with cancer in September 2019. He has been chronicling his journey with the disease.
Sometimes you eat the bear. Sometimes the bear eats you. In 2019 I found out the bear has not only been eating me, but it’s also treating me as an endless buffet.
In May 2019, I had some pain and stiffness in my legs that I dismissed as aging and basically ignored. I’ve always been healthy.
In June, the leg pain worsened. I started popping Ibuprofen like they were M&M’s. I thought (seriously) that it was because I had recently switched wallets from a super-thin one I had used for years to a very thick, but very nice, leather wallet I had gotten as a gift. I thought maybe the thick wallet had somehow bruised my hip (it’s a thing, I looked it up on the internet).
In July, the pain was paralyzing, and I ended up in a local emergency room. Going to the ER was a compromise. I wanted to stay home and tough it out. Cathy, my wife, wanted to call 911. I wasn’t about to be wheeled out of our apartment on a stretcher, so I hobbled out to the car and Cathy drove me to a nearby ER. At this point, I could hardly walk. I couldn’t handle stairs.
The ER doctor ordered X-rays, couldn’t find anything wrong, prescribed extra strength Ibuprofen and a series of exercises and sent me home.
I went to my family doctor, who didn’t see anything wrong but did a blood draw. The whole time the pain persisted.
About a week later, she called to say my PSA score was somewhat elevated. (Her actual words were, “I’ve never seen one this high.”)
I was sent to a urologist for a biopsy.
While I was waiting for the results I ended up back in the ER. A security guard with a wheelchair met me and wheeled me, after a very brief triage, back to the exam bays and then I was whisked off for a CT scan. When the results came in, the physician’s assistant told me the problem was “significantly more complicated” than I thought.
The CT scan showed spots on my pelvis.
I think the words hit Cathy harder than they hit me because I was blissed out on whatever pain killer was flowing through the IV.
Two days later, I saw the urologist’s nurse practitioner, who said that based on the CT scan and my PSA score, I had prostate cancer. She gave me another prescription for painkillers.
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The painkillers worked, but I was still unable to walk or work (because being a photojournalist means spending a lot of time on your feet and walking). When I saw the urologist later in the week, he confirmed the diagnosis, ordered a bone scan and set me up with an oncologist. He gave me a shot that he said would restore some mobility and reduce the pain.
That shot was nothing short of miraculous. In a matter of days, I was starting to walk again.
My oncologist confirmed what others said: I have stage IV prostate cancer, and the bone scan showed it has metastasized. He said it had spread so much that surgery to remove the prostate would be ineffective – there was too much cancer to treat with radiation, although some individual tumors might be treatable with radiation.
He said my cancer was terminal.
He also told me to consider the cancer a chronic disease, like diabetes, that would be with me until I died.
Fall 2019
I started a drug cocktail in October 2019: an injection every six months combined with five pills taken at bedtime to fight the cancer, a monthly injection to restore bone health lost to the cancer, and a handful of over-the-counter pills to battle the side effects of the anti-cancer meds.
Within days of starting the cocktail, I was back to walking and working pain free. I cut back on the painkillers, and within six weeks or so I stopped taking them completely.
Things were definitely looking up.
I started the treatment plan not really knowing how widespread the cancer was. I asked how many tumors I have, if it was “more than two but less than five.” The answer was much more than five but not specific. There are tumors in my legs, hips and pelvis, spine and sternum, arms, and finally, my skull.
Despite all that, thanks to the wonders of chemistry and drugs, I was pretty much back to “normal”.
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Late 2020
The first drug cocktail stopped working in mid-November 2020. My oncologist said we should end the main drug in my cocktail and replace it with another drug that did basically the same thing (reduce my testosterone).
After waiting a couple of weeks for the first drug to clear out of my system, I started a new drug.
It never worked.
Feb. 4, 2021
I was supposed to start chemo today.
I went to the clinic, got hooked up and the prep medications (mostly to prevent nausea) were given. The nurse replaced the prep medications with the chemo drugs. I was talking about life in Thailand while she worked and we weren’t two minutes in when I said, “Whoa, something’s not right,” and my vision was filled with what seemed like millions of bubbles floating through the room. I call them bubbles because I could see through them and see people in the room.
Then I was hit with a wave of pain that started in my stomach and exploded out of my head. They stopped the chemo drugs and restarted stronger doses of the prep drugs, adding Benadryl to the mix. At this point I wasn’t very coherent. I didn’t black out but I wasn’t functional either.
My oncologist came up immediately, and he decided we shouldn’t proceed. They kept me in the room for observation for a couple of hours, and I got better nearly as quickly as I had the negative reaction.
I go back in next Thursday for a new run at chemo.
I’ve tolerated all of my previous treatments really well but I feel like I’ve used up my cancer karma, and I wasn’t too surprised at what happened. What surprised me was how violent it was and how quickly it happened. I’m sorry Cathy saw it, but I’m glad she was there for me.
Feb. 25, 2021
The third time was not the charm.
They started the chemo drugs at about 10 a.m. Shortly after the bubbles came back, and almost immediately a wave of nausea rolled through me followed by searing pain in my lower back, and my head felt like it was going to explode.
My oncologist and his nurse practitioner came, and we made the call to end the session. The new drug does not have quite as many side effects as the original, and it specifically does not have a history of triggering violent allergic reactions, but no two patients are the same.
Disclaimer time. I don’t want to talk about the specific cancer drugs I’m taking because the internet is a fountain of misinformation. Just because I had reactions doesn’t mean everyone will. The problem is not the meds. The problem is me. I’m being given well-established drugs that most people tolerate reasonably well. I don’t want anyone to say, “I don’t want that drug because Jack had a bad reaction to it.”
April 17, 2021
I’ve been quiet since coming into hospital Thursday. I’m trying to process all that is happening. This isn’t a something I’d wish on anyone. I learned last night that I’ll have surgery today. The surgery won’t attack the cancer but is supposed to strengthen bones that have been weakened by the cancer.
It’s not that I want to undergo this but I desperately want to get back on the street and resume my photography.
…
Been out of surgery for almost eight hours now. The pain for the first hour or so was excruciating. Now it’s more endurable.
I literally have no memory of the surgery. I was lying in bed in the operating room talking about my years as a photojournalist and then woke up about 90 minutes later in the recovery room writhing and screaming in pain, which now is pretty much gone.
May 21, 2021
This is my second birthday since getting my cancer diagnosis. I try not to dwell on it. In fact, for the first year I did a great job of ignoring it. My medications were working, and aside from some issues with fatigue it was manageable. I’d take my 14 or 15 daily pills (some prescription, some OTC, but all for the cancer or the side effects) and go on my way.
Since the first medications failed in November 2020, it has been impossible to ignore the cancer (not that ignoring cancer is ever a good idea).
Sometimes, it feels like we’re throwing stuff against the wall to see what sticks.
Next week I’ll probably start another round of targeted radiation therapy before another session of chemo.
June 17, 2021
Cancer is a roller coaster. I know that’s not news to anyone who has had cancer or someone who is close to a cancer patient.
There’s the mental toll cancer takes. The whole “good days and bad days” thing is not just physical. Just because you’re having a good day physically doesn’t mean you’re having a good day mentally. Cancer drugs change your personality.
It certainly isn’t news to Cathy. I’m alive because Cathy is managing the roller coaster in ways I’m not even aware of.
My roller coaster is huge. I’m triggered by the smallest things. It might be a piece of music, video clip, a headline on NPR. I’ll be fine and seconds later I’ve withdrawn into myself and been reduced to a state of paralysis.
It is completely mental, but the paralysis is total. I can’t function. It’s a horrible thing to be sitting in the car, in a state of mental paralysis, and not be able to get out. At home, when I’m triggered, I go to bed and try to burrow through the bedding to some place cancer doesn’t exist.
My cancer is aggressive and spreading. My pain is frequent and sometimes very intense. But the roller coaster? That sucker is gaining speed every day.
All of that hit me yesterday.
The cancer is winning.
My oncologist has prescribed antidepressants, but I hate taking them. The only thing Cathy and I argue about is drugs. She wants me to take the drugs. But I hate taking them.
I’ve gone off and on painkillers more times than I can count. I like to think I can control the pain. But it ALWAYS comes back. In the meantime, Cathy watches the pain slowly take over my life again. It hurts her more than it hurts me.
I start talk therapy next week. That is a sentence I never thought I would write. Growing up, the most prized emotion in my family was stoicism.
I probably should have gone into therapy years ago. But raised the way I was, I can’t help but think it’s giving up. It’s a part of the reality chasm that is my life.
It’s a part of cancer.
Aug. 7, 2021
I haven’t posted much about my cancer lately. That’s because we’ve been in a relatively quiet period. The chemo regimens ended, and none of them worked. I’m still trying the new medication. It’s been very effective in fighting stage 4 breast cancer in women, which has led the cancer industry to try it on men with stage 4 prostate cancer.
Honestly, I don’t see things improving.
I am not going to lie, the pain is significant. It’s interfering with my ability to walk, work or have any kind of social life.
I haven’t eaten a full meal in almost a month. The loss of appetite was accompanied by killer acid reflux. In 64 years, I could eat the most volcanically spicy dish on the menu and it wouldn’t bother me. Now just a spoonful of oatmeal gives me unrelenting acid reflux.
As bad as this is for me, I know it’s worse for Cathy. She has a front-row seat to my incremental death. We’ve always shared household chores pretty equitably. She made dinner; I did dishes. I made dinner (I like to tinker in the kitchen); she did dishes. She cleaned the living room; I cleaned the bathroom. And so on.
People talk about “cancer warriors” and “heroes.” I am not one of those. I am a crewman in the coal bunker of the Titanic shoveling coal while the ship sinks. Cathy is the “cancer warrior” in our house.
We are prepared for bad news. At the beginning of this journey, we were told we had to keep a positive attitude, and we’ve done that.
But there’s a difference between a positive attitude and self-delusion.
Aug. 10, 2021
When I was diagnosed, I told my oncologist that quality of life was more important than quantity of life. Nothing has happened to change that.
When he told us today we had a difficult decision to make, the decision was already made.
In the next week or two, we will end my oncology care and transition to hospice care.
This does not mean I’m on death’s doorstep. I’m in a fair amount of pain and discomfort, but when I fall asleep at night I do not see the Grim Reaper waiting for me.
It is my intention to photograph as much as I can, but the reality is that I’ll be lucky to get out every couple of weeks or once a month. Trying to keep up the energy I need is a lot harder than I thought it would be.
Right now I’m healthy enough to stay by myself when Cathy goes out. At this point we won’t use hospice’s services much, but as the disease claims more of my body, our use will increase. We don’t know how quickly that will happen, but our oncologist told us my cancer is “aggressive,” so it may come sooner than we expect.
On the other hand, nothing about my cancer has been predictable.
Aug. 18, 2021
Every day there’s a little more pain in places that were pain free the day before. Every day I take a few more pain killers. I wouldn’t be doing that if my cancer were in remission.
Today’s visit with our oncologist and his discussion of hospice felt weird. It’s a discussion I’ve been having in my head since my diagnosis. But this time it felt real. Like yeah, I fought cancer but the cancer won.
When I got home and sat down to play the day back in my head, it hit me like gut punch. This is it. I am going to die. Not today. Not tomorrow. Probably not in the next two months. But after that? No one knows.
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I asked a nurse what the timeline was. Cathy said my brothers were coming to see us on Sept. 9. The nurse said I should still be alive then. That was hard to swallow. In other words, we’re counting weeks, not months.
I was supposed to have a procedure to relieve some of the pain. This morning, the hospitals in the state said they weren’t doing elective procedures because the ERs were swamped by COVID-19 patients and soon the operating rooms will be swamped and then there will be a shortage of ventilators. So I can’t get a procedure that would significantly improve my quality of life because some people didn’t take care of their health needs when we’ve all known that masks, social distancing and vaccines would protect them and others in their community.
My future is set, though. I will be at home, watching television and popping pain killers.
Jack and Cathy got a hospital bed this week through hospice and are awaiting a wheelchair. Jack says he is “surprisingly enthusiastic about the wheelchair” and hopes it lets him do a little grocery shopping.
