dave.zatz.us

My journey through cancer

by David Zatz

In 2007, I had my first cancer removed.

I didn’t spot it myself; my wife did, on a Friday night. On Saturday morning, I was at the doctor’s office. She took one look and knew what it was; then she spent about fifteen minutes calling various ultrasound places to get an immediate appointment. That day, I had an ultrasound. I called Columbia-Presbyterian and was told they had a five week waiting period to see the triage doctor; then I called Hackensack and they asked for the ultrasound report. I sent it to them, and I had an appointment on Monday. The surgery was on Thursday. The surgeon, Ravi Munver, claimed a couple more days and the cancer would have eaten its way out of the organ and spread.

During followup scans, Dr. Munver discovered another cancer growing in the adrenal gland. There’s a little story there, too—the Hackensack radiologist didn’t know what he was seeing and recommended another scan. The insurance company refused to pay for one, and I ended up going to a private firm to have it done (at one-third the price). Their radiologist spotted it immediately, so I went back to Dr. Munver. He didn’t have the images from the independent place, so he called up the old images from his own hospital, and found the cancer before I could even start focusing on the screen. That came out three weeks later, and again, just in time.

Well, it wasn’t entirely just in time; the cancer had actually spread, apparently through a capillary, to the kidney. So that came out too, along with the spleen. At this point, I had a roughly one in five chance of making it past the two-year mark.

I am now free of cancer, as far as anyone can tell. They got it all, and it apparently hadn’t spread. The effects of radiation and chemo are fading. However... this is what I wrote in 2015-2017 about the experience. Maybe it will help?

Turning points: when you realize it’ll be okay

Sometimes, you have a definite turning point where your attitude towards life changes. I wonder how often it’s when someone tells you what you already know, but in a different way.

When I had my third cancer, last April, I was told by several doctors that one in five people with it lived five years. (The odds don’t really apply to me. That last cancer was detected early, and had probably travelled via capillaries, so all traces of it were probably taken out.

Thus, there’s a good chance I’m taking mitotane (Lysodren™) for no good reason. Still, I don’t think the “make sure my family can carry on past my death” preparations helped me to evade having my mortality sitting on my shoulder all day long. The darkness was there and it was hard to avoid it.

Mitotane was developed at about the same time as these huts, which I went to visit before starting on the drugs.

Bill Schiemann is the founder of my 1998-2001 employer, Metrus Group, which does various things to bring corporate attitudes, capabilities, and engagement into line. I worked on employee surveys and linkage analysis there. When Bill heard I’d had cancer, he told me about Marisa Harris, a former client who was given a dire prognosis and now runs a web site for survivors.

There are lots of people who have made it past the odds. I think it makes a difference when it’s someone you know, but what really made a difference was having things I could actually do. Other than take the energy-draining, memory-destroying, chock-full-o’-side-effects-but-cheap drugs. (Current research on my particular cancer ignores most of Marisa’s suggestions but does endorse the mitotane — fooey — as well as taking statins with it, and being a man, which apparently helps the odds somehow.)

The point is, reading her web site stopped me from focusing on death and took darkness from my life. It made me very, very happy. It was empowering. Even if the cures come to nothing, I will have lived a better life.

The specter of death is further off now, and as my GP says, I can focus on not having a heart attack instead (she’s a barrel of laughs).

I suspect a lot of us have had those turning points, places we can point to that took us out of the darknesses. Have you had one?

I’m not fighting cancer

I’m not fighting cancer.

I’ve had adrenal cancer twice and another cancer once. My role in treating this has been lying down and letting surgeons cut things out of me, and lying down on a million-dollar radiation machine once a weekday for a month. The bed was too short for me by a few inches and the first few times I sat up, the headrest rattled onto the floor. Everyone who worked there was much shorter than me and said I was simply way too tall. (I am around one inch taller than average.) I can’t tell you how funny that became after a while. Radiation affects your mind, I think. (Also, I still blame it for my poor vision, which was perfect before.)

So that was it for the “fighting” part. As for prevention...

Every few months I lie down and get rolled through a hoop three times for a CAT scan (it used to be around two hours for an MRI), and I get poked with blood test needles around two or three times per quarter. I also made minor dietary changes and fortunately had an attitude change. I take some drugs every day, and see the oncologist and endocrinologist from time to time. With all this, by the way, my insurance company still turns a decent profit.

In case you wondered, these are the drugs. They’re still made by their creator; the patent ran out in the 1970s and there’s no generic. I take 270 per month so my caption is wrong

While I welcome your good wishes and prayers, it makes me a little uncomfortable to be congratulated for fighting cancer. Other people do that, but, for me, there’s just avoidance and prevention. It’s a dull, unromantic slog.

Now, fighting with the insurance company and medical billing agencies... I can do that.

Cancer: the good times

One of the odd things about some bad experiences is that they do have highlights, and sometimes, as the comedian says, “You just have to laugh.”

The first cancer was the most painful, post-surgery. It was weeks before I could move without severe pain. Getting to the bathroom meant taking painkillers, then getting help to leave the bed. (Oddly, this is the only one where they let me go right home from the hospital.)

My religious institution had scheduled “learning services” on my birthday. I was looking forward to it. I made darned sure I was going to that service though it hurt.

When the day came, I got out of the house. It hurt like hell, but I got out and I went. I was happy that day — pained but happy (and slightly less ignorant).

The morning after my second cancer was removed, I asked how I could go to the bathroom and the nurse looked at me funny, and said, “Get out of bed and walk to the bathroom.” I was stunned to find out I could do it.

When they fed me for the first time, it was a bowl of soup. I tasted it, declared it to be excellent, and finished the whole thing. Then I found a tea bag and lemon, and realized that was the hot water for tea.

After that, when a spot appeared on the MRI, I was set up with a surgeon. His scheduler asked when I wanted to have surgery, and I said, “I know this afternoon’s probably full, so tomorrow?”

The scheduler looked stunned and went in to talk with the doctor. Helpful hint: I suggested that, rather than doing things in series, as hospitals prefer, I do everything at once while they gathered together their surgical team for the earliest possible time. So I went out and got my EKG and GP clearance and pre-authorization and all that while they scheduled a time, and we cut two weeks out of the schedule. Sometimes a day can be life or death, so two weeks is huge.

Speaking of which, earlier I’d written about turnarounds. In the hospital, between the drugs, lack of sleep (my roommate felt it necessary to watch every Marvel ever made, loudly, every night, until 5 am, and the nurses seemed incapable of doing an IV properly, and I had to be woken up constantly for blood tests nobody looked at), and, well, recovering from eight hours of surgery, I got pretty well separated from reality. And then the day after they finally let me go home, I had a high fever and had to go back.

A turnaround point came when Pete Doll called me about the New York Auto Show, which he and TJ were covering instead of me. As we talked, it was like I was being put back onto the Earth again, out of the haze and fog and nightmare. That one phone call in the hospital was when I started living again after nine days of phoning it in. So thanks, Pete. I needed that.

Post-script: one other good thing was reading your messages of support and commiseration and, well, just connection. So thank you, and thanks to those of you who prayed for me, or shared your stories and your courage, or who were just there.

And — I really have to thank my long-suffering wife, who was at the hospital for long periods every day, though most of the time I was asleep. My parents came to visit and also got to watch me sleeping. My children visited though I must have been a spooky sight. But my wife was my spokesman and advocate. She did a lot of preparation for me getting home, not realizing that the biggest reason I didn’t walk around the ward was that the nurses did not let me since I was a “fall risk.” (I still don’t know why. As soon as I left the ward I walked as much as I wanted and never fell.)

I didn’t write this at the time, so I’m kind of cheating by adding it now: There are two benefits of having a predicted 0% chance of living more than a few years. One is that retirement funding isn’t quite as tough a chore. Another is that, at the dentist, you can be told that you will need a root canal in a year or two, and laugh at them. (Switching to another dentist a few years later, by the way, voided the “need” for a root canal.)

Getting to keep my memory

I returned from Memorial Sloan Kettering (named after two GM leaders, one of whom knew lead was toxic but still developed leaded gasoline) with good news: I can stay off the chemo unless I get bad scans or blood tests. There's no sign of cancer returning. I also signed up for another research project, but that doesn't really require much from me other than some blood, and I give that to so many people that when I see a stranger with a needle, I start rolling up my sleeve (oops, wait, I'm getting my memory confused with Keith Richards’).

The bad news is that I need to get scans nearly twice as often, and I’m back on MRIs, rather than time-and-money saving CAT scans. Oh, and blood tests twice as often. Gak.

Still alive in 2020.

It’s enough to drive one to a plant diet. But still, it’s always good to get a new lease — and I do mean lease — on life. The drugs slam your memory, energy, focus, and digestion pretty hard.

I wonder how my insurance company will feel about exchanging $1,200 of drugs per month for $1,200 of scans and blood tests four times a year? (Unless they have crazy overhead, they’re still making a good profit on me so far.)

Anyway, it’s celebration time! I’d really been afraid of being put back onto the chemo, or of having cancer again after all. Blood pressure and weight are good, blood and scans are clear, it’s Miller time!

The “early senility” phase

I don’t know about everyone, but for me, chemotherapy was like getting senile far ahead of my time. The effects seem to be sticking with me, too.

Early on I started to lose focus. In the past I’d been fairly high-strung, but could dive into something and stay there, which is handy if you’re coding or writing. I’ve had two jobs where I replaced (or was replaced by) two or three full-time people. At Allpar, I do a good deal of writing, all the editing, a bunch of photography, the occasional video, all the business-end work (including tax returns and my own pension), and nearly all the tech work — which, in a world of ever-changing Web technologies, is nothing to sneeze at. That includes periodically looking into current fads (AMP, Instant Pages, Apple News, etc), forum updates, some security, spam control, and content management systems. Oh, and it’s not my only job.

With the chemotherapy, I had two or three good hours out of each day, and the rest of the time, the last thing I wanted to see was a screen. As for short-term memory, I’d lose events, hours, days — completely. Apparently, though, I could hear (or make) the same joke over and over and each time would be the first. I can imagine that being hard to live with after the novelty wore off.

Even after I was done with the chemo (I hope), its effects lingered on and on. I kept having minor memory lapses and my focus still hasn’t fully returned. Neither has full adrenal function, though that’s normal for what I was on.

With memory and focus failing, anything not written down was lost. Any time I thought of something I had to do, it needed to go onto a list or it would not get done. I did the job in front of me and that was about it; and it was best if it was a short task.

I accidentally dropped a lot of relationships, because anything not directly in front of me just disappeared (and I have to say most people were extremely understanding later, and I appreciate that). I lost a lot of mental depth, only seeing what was in front of me at the time. That’s still a problem, to a much lesser degree.

I don’t say this looking for sympathy, because I am still here, albeit fatter, slower, and easier to fatigue. I say this so you will be aware of the issues if you know you’re going on chemotherapy (each treatment is different so maybe it won’t get you the same way), or if you know someone who is, and so you can figure out how to cope. The effects aren’t always visible, but they’re still formidable, and you just have to plan around them. Hopefully, the chemo will do its job, and you’ll come out the other end and rebuild.

Getting back to normal

I’ve now passed the three-year anniversary of my surgery, which means I’m likely to live long enough to die of something else.

Why is three years a key milestone? Around 80% of people in my situation die within three years. If it shows up again within six months, doctors advise against even trying to stop it; it’s time to get your affairs in order and, perhaps, get it over with on your own terms while you still can. (Or not; there’s always a chance.)

Over the last few months, I’ve had to change my mind-set again, from “I’ve got a definite time limit” to “I might just make it out of this alive.” Well, long enough to die from my high cholesterol, sedentary lifestyle, or some moron who’s too busy texting to notice the stop sign. Or even old age!

It’s a little strange, after living three years knowing that I’d probably be gone by this time, to have the reason I won’t collect Medicare go from “because I’ll be dead already” to “because Congress doesn’t like it.”

I do sometimes have to remind myself that the worst danger is over and I’ll probably make it through.

There are lots of people out there with cancer — I think around three quarters of the people in my car club have had it. You’d be amazed at the number of radiation and chemotherapy veterans out there. I am sure my issues aren’t unique; but I haven’t really heard anyone talking about the difficulty of moving back to an “I might live through this” perspective, after resigning themselves to dying in a three-to-ten-year period. It’s almost as hard to face the change of going on living, as it was to face a premature death. I find myself not quite believing it, even not quite willing to believe it in case my belief changes reality (which rationally I know is unlikely to happen).

How about you? Have you gone from facing death to, well, facing life? What is it like — or what was it like for you?

The lingering shadow

Most people who have recovered from cancer, strokes, or heart attacks are happy to still be here; and there’s not much we can do, usually, other than shrug and go along with it, taking whatever drugs, doing whatever exercises, diets, or surgery, we are told to take or do.

That makes it easy to have a “good attitude,” at least to other people. Still, there are some things you don’t see from the outside, and I doubt I’m alone in this.

“Before.”

I gave up an adrenal gland, kidney, and spleen, and one other organ, but in the end, I drink more water and less alcohol, and that’s pretty much the impact of the surgeries. There are other problems, though, which seem to be fairly common.

Everyone’s chemo is different; doses and chemicals vary, some get infusions and some take pills. In my case, it was pills, up to 12 grams of mitotane (Lysodren) per day, which, since it builds up in fatty tissue and then gets dumped into the bloodstream when fat is burned, comes with regular temporary overdoses.

There’s a long list of side effects; for me, it was mainly...

• Short-term memory loss — with some permanent after-effects
• Some long-term memory loss
• Insomnia
• Loss of focus and drowsiness (partly due to lack of sleep)
• Memory loss
• Nausea and “bad tastes” for common foods
• Alternating diarrhea and constipation
• Inability to track time
• Memory loss

Under the drugs, I had to live by lists. I couldn’t stop working, even if I couldn’t work effectively, and made far too many mistakes, particularly with unseen word-substitution. I had no focus, and a sporadically functioning short-term memory. If something wasn’t written down on my list, it didn’t get done. I still tended to go off into a daze. If you wondered why I started going through Allpar’s “back issues” to improve and illustrate them, now you know.

Poor memory leads to mistakes, like posting a story on a new feature that was launched a year earlier. It leads to embarrassment when you introduce yourself to someone once a week as though you’ve never met — nobody likes that.

I also made other kinds of mistakes, partly judgement, partly memory, partly word substitution. I started recalling the wrong word, and didn’t see it. I’ve always done this now and then, but it started to become a regular thing, and nearly everything I wrote ended up having at least one totally wrong word or big mistake.

Working in a semi-daze leads to posting things by accident, changing things mistakenly, mis-programming. It was a mess. In many ways, it still is.

I’ve been off chemotherapy for, I’d guess, a year (I still can’t really track time, but I never did that well before, either). While my short-term memory has largely returned, it’s not fully functional; and I still make foolish mistakes more readily than before. My ability to recall words and names appears to have been permanently damaged.

I don’t quite have the stamina I used to have, though that’s getting better, too. I’m able to do more for longer, and to travel better. I can handle full day events now. It takes a while to get the strength back.

Other cancer survivors have reached the same conclusion: you may look fine on the outside, but it takes longer to recover inside — and even if you do, some things never quite come back. I don’t know if others have had the experience of screwing up while “under the influence,” and thereby losing opportunities and respect — but I suspect many people have.

It’s hard to explain to people, especially people who are angry with you for some slight or screwup, without seeming to be looking for excuses or pity. I’m not looking for pity — just trying to explain that it’s not intentional, not a character flaw, it’s just the way it is. It would be easier if, on the days when the stars align poorly, I recognized that I shouldn’t be doing anything that others can see, shouldn’t do anything without checking three times; on those days, judgement seems to fly away. I get full strength maybe one or two days a week, and bad days maybe once or twice a week as well.

Some people will say they admire your attitude for working it through and not, well, I don’t know what the alternative is. Others may resent you for playing the pity card or something. Regardless, I don’t think people in this position have much of a choice in what we do. People keep going in all sorts of crazy situations... dare I bring up On The Beach?

Let me reach out to you, fellow cancer survivors, stroke survivors, or other major-health-problem sufferers: has it been the same for you?

Regaining normal

I’ve regained most of my cognitive abilities, and am now going to a gym and working on my lost strength. Nearly all the effects of the mitotane are gone; I can remember things, multi-task, and act pretty normally. What you read here is a history—perhaps a help to guide others down the path I walked. Through 2019, my memory and ability to focus and work slowly returned. I sit here in 2020, reasonably functional—and hoping to regain some of what I’ve lost over the last decade.

[During 2020-2021, I wrote three car books, two for “real publishers.”]

Wrapping up in late 2023

The short-term memory loss has, over time, been getting better. There are fewer and fewer episodes as time goes on; almost none this year. The memories lost earlier aren’t coming back, not surprisingly. The loss of focus and drowsiness is far better for most of the day, though I can’t put in the kind of full-on days I used to. The bad tastes for common foods are just about gone, and I can track time somewhat better.

One interesting question on job applications is asking if we have any sort of disability, or had one. It makes no distinction between having one now, and having one in the past, and I don't know whether to say yes or no; cancer is included, but I don’t trust organizations not to blackball anyone who says “yes” at this point. Indeed, studies are showing that automation blackballs most good job applicants at many firms, for odd reasons—a gap in the resume (even if it’s due to bad automation, not reality), “too old,” not matching specific words, and so on.

I truly miss Allpar, but it was too much of a weight for me to carry at the time. I do wish I’d held onto it by hiring others, but I couldn’t find anyone with the needed skills who was willing to do the job. Today I have some involvement, not quite as much, in the news site stellpower.com and the background/stories site motales.com. These are easier to manage.

It’s almost certain that I have no after effects of the actual cancer; it’s a bit more sensitivity to cold from the radiation, and a lot of effects of the mitotane. But oddly the older I get, the more my mind seems to be coming back, but only for around eight hours a day. It’s very annoying for someone used to doing the full time work of three people.

© 2018-2024 David Zatz.