You have been assigned this mountain, to show others it can be moved.
In the last installment, I talked about how emotionally difficult it was for me to tell Boo’s story. But the whole point of this series is to talk about feelings and experiences around death, and how they are unique. I have two stories I’ve put off because I wasn’t sure where to begin, or how best to address their complexity. Part of what makes David’s story complex, is that I had many different reactions based on many different social contexts over a number of years. Also interesting is that, in the end, no one actually died.
I dated a lot when I was younger, but none of my relationships ever clicked long-term. When I met David, I was in my mid-30s, the timing was right, and we were married after only 6 months. Then, somewhere in our first two years of marriage, he was diagnosed with malignant melanoma, which started a new reality for us where the context of cancer became our lives.
I remember talking to my supervisor. I told her I didn’t want anyone else to know. I only told her, because I had no idea what sorts of demands my new situation would put on me. It was the same reason I briefed my staff. But I wanted my workspace to be free from the cloud of cancer. I didn’t want to talk about it, be asked about it, or have to think about it. I wanted to come to the office, do my job, and enjoy one place in my life that remained normal–a normal work environment.
But even asking folks to keep it to themselves, it only takes one person for news to travel, and it wasn’t long before I realized my coworkers knew. All I could do was ask them to not bring it up to me in the office.
I still remember the day an executive assistant came into my office looking awkward. She told me she was “so sorry”. I had no idea what she was talking about, and assumed it was a development on one of the projects. But she clarified it was about David. I don’t recall her exact words, but she said something about how well I was holding up. She said if she were in my shoes, she didn’t think she could cope. I told her I wasn’t sure what she meant, because there weren’t any alternatives. Cope or what? Don’t cope? What does that even mean? There was nothing else to do except continue on.
At the time I remember recognizing how often people idealize coping with cancer–either their own, or that of a loved one. I wasn’t doing anything exceptional–just showing up at work.
Since this series is about perspectives on death, I will share that several years later I learned there is an alternative to coping: Not coping. The same woman who had come to me in my office, lost her husband suddenly and without warning. Her estimate of her ability to cope, that she’d confided to me, was dead on. She had a breakdown and ended up on medication to help her deal with the situation. My younger self would have seen this as a weakness–to be incapacitated by tragedy. Now, though, I understand we all have attributes that are strengths or weaknesses depending on circumstances. I could say when her husband died, she felt too much–she was overwhelmed. But that ability to feel so powerfully could serve in other ways–for example, empathy for others would be useful in supporting folks who rely on shared experience to lighten their load. I tend to be more comfortable not sharing difficult situations. But other people find comfort in sharing. Someone like my coworker, would be a good person to share with–someone who could not only listen, but understand. She would be far better equipped to support and anticipate the needs of others, than I would be.
I was driven to research the disease. I needed to know all about it: stages, treatments, prognosis. Meanwhile, David wanted no part of it. He made it clear he didn’t want to talk or hear about the information I was finding. I didn’t understand his decision, but I respected it, and kept the information to myself. This difference in perspectives would come back to me in the form of resentment. I understood not wanting to obsess about it, and how it was a dark space for him. But we had medical decisions to make that would impact us both–not just on an emotional level, but on resource levels. David was self-employed, so we had health insurance through my work. And later in the process he would be unable to work at all–so that all the financial obligations of our life would fall on my shoulders. Being the only party in the situation equipped to make informed decisions about courses of treatment and resource allocation put one more burden on me, and additional responsibility for David’s care.
We began by seeing an oncologist, who became our hub for everything else that happened. She put us in touch with a plastic surgeon who would do the initial surgery, which served a dual purpose. First, it was necessary to excise the affected skin and surrounding tissue, as the front line treatment. That would then be sent for testing to see if we had to worry about further spread. When we met with the surgeon, David was uninformed and unprepared. My reaction was exasperation, and a little embarrassment.
The doctor sat us down and walked us through the situation. What he was going to do and why. Melanoma, caught early, is easily treatable and survivable. But caught late, it’s incredibly deadly. We didn’t know where we were in the disease’s progression, and needed to have that information in order to make further decisions about future treatment.
David looked at Dr. H defensively. “How big is this incision? How much tissue are you going to remove?”
I remember thinking what an odd first question that was. It was Stage 1 melanoma. It was going to spread–if it hadn’t already. It was lethal if left untreated–and David’s priority was how big an incision was needed.
Dr. H seemed unconcerned. “Not that much.” He cupped his hand to illustrate. “About like a tea cup.”
David was visibly shaken. His next words were defensive. “A tea cup!?” He paused before continuing, “What if I don’t want to do it?”
Dr. H looked at me in disbelief. I was speechless, but he understood from my expression when I shook my head, that I shared his consternation.
He turned impatiently back to David. “That mole is stage 1. We need to do this surgery to find out what stage you’re at. If we do nothing it will keep spreading–eventually to Stage 4–if you’re not already there. And there is no Stage 5.”
David seemed angry. I don’t think Dr. H cared. He struck me as a professional who wasn’t interested in wasting time with a patient who didn’t value their own life over a handful of tissue. He had other patients, I’m sure, who were interested in surviving.
It was blunt, but it worked. Where I was unwilling to burden David with dark realities he didn’t want to hear, Dr. H was there to drive those dark realities home. This was one example of why I resented being the only one who understood what we were dealing with. I was the informed party, I was the financially responsible party, but David, who was disinterested in informing himself, was the party who was going to be making decisions about his own treatment. In the end, though, I can’t fault someone for not wanting to have to confront a deadly diagnosis. Again, we all have our strengths and weaknesses. And one of David’s strengths is an unending supply of optimism, and maybe that’s buoyed by ignoring negative information and oppressive odds. Maybe someone like David, in a different context, provides a light at the end of a dark tunnel? A positive, can-do attitude that can get a friend over the next hump?
But that was where we started.
Waiting on test results is awful. They take a biopsy. They send it off. And then there is nothing anyone can do until information comes back that will inform the next steps. That in-between time is where I had to pretend I wasn’t stressed and worried, where I had to just put a nose to the grindstone and keep things going. Keep the money coming in. Keep informed about what happens based on these next results. Keep the house in order. Keep people updated. Keep myself rock solid, because someone had to be the foundation for the rest of this new world to balance on.
And every single time, with every single test, I would hope for the best and wonder if I was honestly prepared for the worst.
I won’t bore you with details of how the testing is done, but the results weren’t good. The stress of waiting for results was compounded each time we hit a progressive stage. Stage 2. Stage 3. I kept thinking how absurd it was that a tiny mole could cause this level of devastation. I was angry that we didn’t notice it sooner, so that all of this could have been avoided.
I didn’t realize how much stress I was experiencing during this time. What brought it home was when we tested for Stage 4–the final stage. Since we’d gotten bad news at every other test, since my hope had so far betrayed me, I was braced for more bad news. I felt like I was in a car sliding and spinning toward a cliff, unable to stop. Finally fate grabbed the hand brake, and stopped us. The Stage 4 scans all came back clean.
There is no way to describe the relief I felt. And that’s what made me realize how bad the pressure had been. We caught a break. There was a light. There was a hope. The odds were not in our favor, but they were better than Stage 4 odds–which were pretty well unbeatable.
I felt floaty and light.
During all of this, I wasn’t sleeping well. People might think that makes sense–in the same way any stressful situation makes a person’s mind busy and agitated. But that wasn’t what was going on. My lack of sleep was intentional, not incidental.
I stayed up late an woke up early, so that I wouldn’t miss out on time with David–even if he was asleep. I felt like losing him was imminent. We wouldn’t have all those years together like some couples. We might have only a few, or even months. I didn’t want to miss a moment.
Sometimes I felt grateful we’d met and gotten married, despite the mess we were in. It seemed like David had found me just in time to see him through. I was that rock solid partner who could shoulder all of this and still be standing if the worst happened. I could do the research. I could pay the bills. I could provide the insurance. Whatever he needed, if there was a way to make it happen, I could make it happen.
I often wondered if I would be a widow in my 30s.
I don’t recall feeling sad or crying. I don’t remember ever asking “why?”–as in “why us?” or whether there was some sort of reason for it. People get melanoma. I was angry we didn’t catch it sooner, but that was about it.
I didn’t have time to reflect. I remember David received a care packet when he was put on interferon treatment. Our doctors talked to us about support groups in the area. But neither of us felt we needed support. Looking back, I regret not checking out some of those resources. What I thought was me being stalwart, was really me ignoring my emotional needs, taking on too much, and as a result, becoming less human. I didn’t believe I could afford to feel anything, because someone had to keep the ship afloat.
Health Insurance Context
All of this happened in the days before the Affordable Care Act. So, things were a little different with regard to how insurance operated. I worked at a small company–30 employees or less. They provided a modest insurance package as part of their benefits. Before David got cancer, our company was a profitable customer to the insurance company. Afterwards, the insurer had to pay out more for David’s treatment than they were taking in from premiums from members at our company. And I understand–our medical costs were extreme. So, our for-profit insurance company, which was happy to cover us, as long as we didn’t need to use their product, hiked the premiums at our company’s next renewal and priced out all my coworkers. They couldn’t price out me, because the only thing worse than exorbitant insurance premiums and copays was losing insurance entirely. If we had to get insurance elsewhere, we were out of luck. No company would take on a cancer patient. When the price shot up, the employee participation went down, and this allowed our provider to drop our company as a client, leaving every employee at the company without insurance. David’s cancer broke the company’s ability to provide insurance benefits to everyone there. My coworkers all knew what had happened and why. Technically, I could have opted out of the plan and let everyone else continue, but opting out of employee provided insurance would have ruined me financially, and possibly been a death sentence for David if he weren’t able to continue to access treatment.
I don’t think anyone I worked with blamed me, but I still felt guilty. My manager brought me a packet that talked about a health insurance risk pool offered by the state of Texas. It was horrible, but it would keep David on a plan, since he wouldn’t have to pass a health test for new insurance. With no other options, I signed up for the pool. After that, things declined quickly for me, financially. The new monthly premiums were the same as our rent. The deductible was several thousand dollars. And on top of it all, we were still responsible for copays. One day when I was at work, David got a call from one of the hospitals. He was out of it from his treatment, and he told them we would agreed to pay $200 a month to work off our debt. He was too sick to work, and now we were sinking–I was sinking. I got angry and complained to David about what he’d done. Later I felt sorry about complaining in front of him. He didn’t need that–but neither did I. And this is why I think the support group might have helped–just someone to complain to, that wasn’t David.
Something else I remember about that time was all the advice. So much advice. What people didn’t realize is that doing so much research–just about the illness itself–was exhausting. Every offhand comment about some avocado cure or whey protein treatment meant more time digging through websites, citations, and research papers. Some of these recommendations were expensive. I remember reaching out directly to a researcher in a study on whey protein. He wrote back a nice letter and explained that high doses of vitamin C would yield the same results, basically letting me know there was no need to spend an arm and a leg on whey protein–but he also warned it wasn’t a cancer treatment, just a metric of immune system health. I knew this, but I understood why he felt a need to be clear.
I used to work for a medical journal where it was my job to edit medical research papers. As a result, I’m not bad at reading and comprehending research results, and honing in on relevant information. I imagined what it must be like to be in someone else’s shoes–willing to try anything to help someone–and not knowing how to research. I realized how someone could easily go deeper into debt buying all these bottles of hope. What about someone who didn’t know where to find medical research papers, how to vet journals, how to locate a researcher, or what questions to ask if they could?
Because I was equipped with a skill set a lot of people lack, I reached out in productive ways. I was able to go back to David with the actual lead researcher saying “high vitamin C” could do the same thing for a lot less money. We ended up not doing it, but there are so many predatory claims out there. And when standard treatment options offer little hope, people get desperate. Even reasonable people.
Tip for well-meaning friends
One tip I’d like to give for folks who want to offer advice like this: I wish people who had cared enough to mention these articles they read or these TV shows they saw a few years ago about whatever treatment or cure they thought I needed to consider, had cared enough to research it themselves before they recommended it. I wish they’d cared enough to provide citations and links I could have brought to our oncologist. Instead they burdened someone already drowning in an overwhelming ocean, with the task of spending hours looking for whatever it was they read or saw, and then trying to find research to determine whether or not it was even something viable. What if I didn’t look into it? What if I left stones unturned, then had to live with that the rest of my life if things had gone south? There is substantial pressure to investigate any lead in situations like this. Just something to think about.
Resource: American Cancer Society
To help in this regard, I bought a very affordable book about “alternative” and “complementary” cancer treatments from the American Cancer Society. They used “alternative” to mean “instead of” standard treatment. They used “complementary” to mean “in addition to” standard treatment. The book investigated claims of cancer cures and treatments and provided a breakdown of any studies or evidence behind them. David and I agreed that we could try anything in the complementary section that showed promise. We selected a few supplements and implemented some dietary changes–again, after confirming with his oncologist they wouldn’t conflict with his standard treatment.
David did almost a year of interferon treatment, which kept him incapacitated in bed. The symptoms were similar to a powerful flu. Our relationship during that time consisted of David being sick, while I researched, worked, struggled with mounting medical debt, and handled everything about the household on my own. Most of what I felt during that time was stress and resentment–mainly toward a system that put this level of burden on people in times like these. At the very time we were dealing with a deadly illness, the society we lived in was piling on debt, stress and pressure–using the lives of our loved ones as leverage. Who wouldn’t go bankrupt to save someone they love? But I was looking at mounting debt and asking “will this even save David?” I was looking at the real possibility that I’d be left with nothing but a bankrupting pile of debt as a reminder of my dead husband. I thought about the real possibility that all this money and all this effort might result in a complete failure to save his life. And even if the result were a total failure, the cost to me would be the same as if it had worked.
Trail Tamers and The Lake Cabin
Before David became ill, we used to love the outdoors. Our first date had been a several mile hike. I missed the outdoors, but there was no way David could handle the rigors of camping or hiking in the shape he was in. I felt selfish, but joined a local volunteer group called Trail Tamers, that did trail maintenance for local and state parks. It got me out of the house, and I met a few folks. But I couldn’t fully enjoy myself while David was sick at home in bed, and unable to enjoy much of anything. I felt like I was leaving him behind–out having fun while he was left alone, sick at home.
This prompted me to search for cabin rentals. After a while I found a park online that rented cute efficiency CCC cabins on a lake. The price was affordable enough at $35/night, that I didn’t feel it was too extravagant. I rented one for a week. We went. David had an incredible time. It became our regular anniversary trip every year after that, the entire time we were married.
When Standard Treatment Fails
I remember feeling like our lives were on hold, and we couldn’t proceed with any future plans. When I finally realized I was waiting to see if David would survive, I decided to plan a future “for one”. Whatever I did going forward, would have to work if my future was solo–if David wasn’t able to be there. As an example, we had been looking to buy a house, but now I only looked at houses I could afford on a single income. I maintained this strategy throughout the marriage, operating as though I could only rely on myself. It allowed me to move forward while still dealing with the present situation, and alleviated a lot of my frustration of the feeling of “stuck-ness” I was beginning to experience.
I could go on. I could talk about how the standard treatment failed, how it feels to get so many clean scans, only to then hit one that doesn’t look quite right. I could talk to you about how it feels when you ask an oncologist “what’s next?” And they look you in the eye and say there is nothing else they can do.
I could talk about how the impact on a caregiver and a patient can create lasting scars. How that hope of returning to “normal” falls apart once you realize that you’re living the new “normal” and there is no going back to being newly weds–to a honeymoon phase. It stole the past we should have had. It wrecked the present. And it turned the future into a struggle to find a new rhythm. My perseverance–that strength I felt so proud of–became a weakness. I stayed, I tried, I worked hard, but in the end, it did nothing but prolong the inevitable, and ultimately the marriage ended in divorce.
Before that, though, I was able to do a bit more good. I was able to find a research trial that was designed for people in David’s narrow situation: People who had a recurrence after standard treatment, and a follow up surgery to remove detectable cancer. Getting into the trial was a task, and we then had to figure out how to get David to treatments in Virginia. I have to thank Angel Flight, a group of dedicated volunteer pilots, who help folks do just that.
I don’t know whether it was the final surgery or the research trial that did it, but almost two decades later, David is still among the living. We’re still together as friends, and, in fact, we still share the house we bought together. I’m still plugging along as I’ve always done, while David works on starting up a new business for himself in the spare bedroom that’s been converted to an office. I never stopped loving David, and I don’t consider the marriage a mistake or a failure. Relationships change and grow, and in our case, something came along that knocked the wind out of our romantic connection. But I’m glad I came long for David when I did. I’m appreciative someone like me was there when someone like him needed it most. I am grateful I was there to provide support and a solid foundation for a good person during a difficult time. I threw everything I had at this situation, and it most certainly wasn’t easy. But in the end, it was rewarding. And If I had to choose a thousand times, I would always choose to have David still alive as a friend, than to be his widow in my 30s.