In the summer of 2022, I started feeling pain and nausea after eating, and in just a couple of months, I lost around 40 pounds. I wasn’t a large person to begin with, so it was pretty obvious something was wrong, and keeping it private wasn’t really an option. I was also jaundiced, but it was hard to tell from my skin, which gets much darker in the summer. Neither could I tell in the bathroom mirror that the whites of my eyes were slightly yellow, but my doctor spotted it immediately. My urine was often brownish orange, and it didn’t take a psychic to predict my lab results would be bad. Five scans and eight weeks later, I was officially diagnosed with pancreatic cancer, the "bad" cancer. Other cancers kill more people, but if you get pancreatic, you're usually cooked within a few months.

It's hard to believe I'll soon be rounding the corner on three years. There's nothing lucky about getting cancer, but I feel fortunate and grateful to still be above ground. By the numbers, I'm well past my expiration date and mostly okay. I'm literally off the charts (some charts), and it's not just because they cut off after ~24 months, no doubt because there were no more people left to count.

Pancreatic cancer is bad. That's all you really need to know.

In the early days, I would get obsessed and confused trying to understand what the statistics meant for me. Ultimately, I concluded there are no answers for me or any individual, only the odds of the bet that you get to stay alive. The bet was already made, so it’s not like you can pass on it. No one can say how much time you’ll get, so I say, forget the numbers and focus on living. 

When I was in remission, every day brought me closer to the somewhat arbitrary goal of  surviving past five years, after which even the baddest cancer is thought unlikely to come back. This is the medical definition of cured. If I were to survive past the five year mark now, at stage four with lung metastasis, it should be even more impressive, but I'll never be a unicorn, meaning a cure is off the table as far as FDA-approved medicine is concerned. That ship has sailed, and all that's left for me is the possibility of a marginal extension of my life in exchange for a lot of suffering and a high risk of dying from the treatment.

I’ve had an incredible string of lucky breaks, minor miracles, and amazing people helping me along the way. Early on, a new friend told me I needed to learn to ask for help. This was after she informed me she would be driving me to the hospital for the big surgery. She was right, of course. I was planning to drive myself, which, in hindsight, made no sense. This is still one of the hardest parts of the whole ordeal. It’s humbling to ask for help and scary to relinquish control. I was always (at least in my mind) someone who could figure things out, solve problems, and make things happen. I took care of people, not the other way around. I believed I couldn’t afford to fall apart because other people needed me to be strong. I wouldn't even stop to ask for directions (before GPS). I'd get there eventually. 

My most immediate need is help with paying the rent. I’m not too far behind, but the landlord is getting impatient and has used the word eviction more than once. While in remission, I went back to work part-time in a friend's store to make up the difference between disability payments and what it costs to live now (not even close), and though it was good for me to exercise my muscles and use my battered brain solving other people's relatively easy problems for a change, it did take a toll. When the cancer came back, and I restarted chemo, it was too much. Now I’m scrambling again to make ends meet, and it's not working. You might think there’s a safety net for people who get cancer, and there kind of is, it’s just full of holes—it may be more holes than net—a patchwork of public and private institutions, all with different rules, requirements and strategies for rationing funds between too many people in need. For example, where I live, you have to win an actual lottery, held maybe once a year, just to apply for subsidized housing. I've exhausted all the options I know of, and trying to remember to have faith, believe it will be okay, and pray for the next miracle to catch me. In the meantime, I’m here, asking for help.

A worthy Endeavor

My plan for my remaining time is to publish a book based on my blog: The Bad Cancer Diaries: A Cynic's Guide to Surviving Pancreatic Cancer. It's a collection of stories I started writing, at first just to help me process what was happening to me—I found I could relieve some of the horror of it all with dark humor. Before long, two themes emerged: one is surviving cancer treatment and avoiding fatal medical errors. The other is about why cancer treatment options are so meager, especially when it comes to pancreatic cancer, when there are so many promising drugs and therapies that should have gone to through trials for FDA approval, but for want of funding or a financial incentive, never will. They either can't be patented (plant molecules and supplements) or were patented for another purpose. There are ways to access most of them, but few doctors are willing to help, and you take a big chance going outside the system. I don’t think it’s hubris, or not just hubris, to think I could help others survive by sharing what I wished I’d known going in. That seems like a worthwhile endeavor for whatever time I have remaining and very achievable as my cancer is growing relatively slowly, and I’ve recently joined a drug trial of a targeted therapy purported to kill pancreatic cancer without the toxicity of chemo. I don’t know if there’s any chance at a cure, but it just might slow or stop the cancer and buy me some more time. 

I'll most likely self-publish, which I've done before, but an editor would be a great help. That often costs money, but I'll cross that bridge when I get to it. Stay tuned... For now, I need to pay the rent so that I have a home to live and write in while receiving treatment. 

I'm going to summarize some of the events since my diagnosis, but I encourage anyone who'd like to read more to check out my writing at badcancer.substack.com. It’s not all depressing. I use sardonic humor to lighten the dark heaviness of cancer and explain what I learn in understandable language.  There is an option to become a paid subscriber on Substack. I hope you'll consider that, either in addition to or instead of contributing here. Nothing is paywalled, so you can read all my posts for free. 

A stupid way to die

I started chemo right away, then had the dreaded Whipple surgery in November of 2022, then more chemo, until I got septic shock in February of 2023. That put me in intensive care for a week and was a close thing indeed. I found myself on the floor, and had I not been able to crawl to the phone and dial 911, it might have been the end of my story. It brought home to me how near death was, from the treatment, if not the cancer. Chemo had wiped out my immune system, and that’s why the flu, which I didn’t know I had, because it’s the immune system responsible for most symptoms, was unchecked and led to pneumonia, sepsis, and septic shock. I learned much of this from a fascinating book called Immune – A Journey Into the Mysterious System That Keeps You Alive by Phillipp Dettmer. Sepsis is what a cancer death often looks like, and it might be avoidable if patients were sufficiently armed with information and warned about the seriousness of the risk they’d take by, oh, I don’t know, shambling through the isles of a grocery store for over an hour like one of the walking dead–not that I’d ever do anything so dumb. It's an unnecessary way to die, only tangentially caused by cancer, and would probably be classified as a complication.

Hypoxic brain injury is one result of having no blood pressure to speak of for a prolonged period of time. Severe sepsis or septic shock shuts down your organs, including, eventually, your brain. After I was released, I noticed some tasks were more difficult than before or impossible, and I had trouble with my short-term memory. I remember staring one night at two pill bottles I was holding and not knowing which drug I’d just taken. I've recovered somewhat, but it doesn't look like I'll ever return to baseline. My brain has racked up some extra mileage, and on a CT scan, appears more like the brain of someone a lot older. That's not depressing at all.

I was in remission until a few months ago when small nodes showed up in my lungs on a CT scan and grew and grew until one got big enough to hit with a biopsy needle. It came as no big surprise that it was metastatic cancer, since that's how it usually goes, but that didn’t make it any easier. I started chemo again with different drugs, but soon concluded it would likely kill me faster than the cancer. 

Statistics vary, but one set claims septic shock takes out roughly half of its victims in hospital ICUs and up to two-thirds of cancer patients. I figure my odds of surviving a second round with it are slim. In addition, on the new chemo, I felt horrendous, was afraid to leave the house, and most of my hair fell out after just one infusion. In the best case, I’d remain alive, but without a life. The plan, which I only learned after it started, was three weekly chemo infusions, then one week off, for three months, then check to see if it worked, rinse and repeat. Kill me now, I thought, when my oncologist finished explaining. At least cancer would most likely kill me slower and with less pain. At that point, my other options were basically do nothing or try to become a research guinea pig, which is what I ended up doing. I’ll post an update when I know more about the drug trial.

Thanks for reading to the end. There is another way to help.  Please share this campaign anywhere and with anyone that makes sense to you, online or off, and prayers are always welcome.