The High (Financial) Cost of Cancer and Why I Am Not Setting Up A GoFundMe Page

When I was diagnosed with metastatic, inoperable Stage 4 Lung Cancer, it wasn’t long before people were suggesting that I set up a GoFundMe page or use a similar service like YouCaring that would allow friends, family and even total strangers to donate money that would offset my soon to be staggering expenses. My first thought was, “wow, someone else can pay my bills! Score!” I knew about these sites — I had even donated to a few families through them, just like I had supported projects on Kickstarter and IndieGoGo, et. al. — but it had never occurred to me that I might one day be in a position where I would need to set one up. After all, we have good insurance, my wife has a steady job and I should still be able to work at least part time — that is what had run through my head — so this was a storm I expected to weather.

At first, things looked promising. Thanks to the Affordable Care Act, our family’s insurance costs actually came down. We were no longer subsidizing larger families (yes, I understand that families with more children may have seen an increase in premiums because many old policies used to have “family” rates that did not count the number of insured) and we also now had two “safety nets” built into our coverage: a potentially manageable annual cap on medical spending and the knowledge that I could not be dropped or denied coverage because of my condition. Had I been diagnosed a couple of years earlier, this would have been a very different story and we would, with some level of certainty, have lost our home by now or I would be getting treated through some other means entirely, maybe even be dead, or some combination of those options. I am not joking about being dead as an option, because I have seen the results caused by relying on lesser insurance and the “delay” cycle patients can be put through, not to mention how hard it is to fight for the best care options when something else might do at half the cost. With cancer, especially, time is often of the essence, and even a month or two of going untreated can mean the difference between crossing the blood-brain barrier or setting up shop in the liver or kidneys or any number of ways that cancer can spread beyond an easily treatable level. But we had the ACA and we had good insurance that we could rely upon and we knew that it would only cost up to a certain amount each year. We had this covered.

Perhaps the glasses I had been wearing were a bit too rosy. Pre-treatment, I had been inspired by the stories I read about patients going back to work during their treatment time. Heck, I booked a job during my first infusion cycle so that I could prove to myself how it could be done. And it was an amazing job, a terrific experience and I pulled it off. The thing is, however, that chemotherapy has cumulative effects. They sneak up on you and linger, so that what was entirely manageable the first cycle was much less so three weeks later, and so on. By the end of my fist six cycles, I had been spending a good week or more mostly on the couch and I sure as hell wasn’t getting much work done. I was exhausted more than anything else, both mentally and physically, and working even part time was truly difficult. Even more difficult than the work, however, was client retention. And those capped expenses I had been so excited about, well, it turns out that when you have a tight budget and your ability to earn takes a hit, those additions take on a whole new level of meaning.

Luck of the Draw or Privilege and Opportunity

This is one of those areas where I cannot sing the praises of my wife loudly enough. It is because of her, and her alone, that I have access to the medical care that has afforded me such a good chance at living long enough to see my daughter all the way through her childhood. I have no illusions about being cancer-free and being healthy until I’m 100, surrounded by generations of my progeny. But I do have faith in medical science continuing to advance and I have reason to hope that in a few years I could experience what it is like to hear the words “full remission” or “no evidence of disease” after a battery of tests… When that happens, and I am confident in this possibility coming to fruition, I hope that I am still spry enough to begin a new professional phase in my life that will offer a good infusion to offset the steady bleed that the system still requires. I feel truly, truly deeply for patients who do not have access to or cannot afford a good insurance policy that allows them access to the best care, where they can fight for their choice of oncologist and treatment centers that have access to the latest scientific research rather than a cookie cutter approach. I believe deeply in equitable access to the best care, which is about as political as I am going to get in this post, but there is still a huge disparity (even with the Affordable Care Act) between the notion of “equal access” and “equity of care.”

I see my level of privilege. There is no doubt that I am stressed and that I am stretched beyond what I thought possible. But when I look at those pages of my friends and their friends and the many others beyond three or more degrees of separation that have been set up with web sites asking for personal donations, my heart breaks for them. I wrote a plea for donations for an old client who was sponsoring a baby boy in the Philippines who needed a $5,000 treatment his parents could not afford, just for this child to survive. In the process, I read through dozens of successfully funded campaigns, focusing my attention more and more on those supporting cancer patients and their families. I cried excessively. I took stock of my own good fortune, my optimistic prognosis, the true gift of my family.

But I also have to recognize some basic facts. It is less difficult for me to work now than it had been a year ago — after more than 30 infusion cycles I am beginning to get my body “used” to the process in a way that allows me to be more active, more often, and mental clarity is rarely an issue anymore — but I still have limitations from fatigue and a degree of week to week unreliability that prevent me from being able to hold steady work, keep to set hours or otherwise be traditionally employable. Thus, I continue to rely upon freelance opportunities, mainly those that can be done from my home office, and these are harder to come by than ever for a number of complicated reasons in the marketplace. My time is then spent mostly scrambling for opportunities, tracking down payments and trying not to get taken advantage of by clients who seem to think that creative work should be free even though it is highly specialized in nature. The bulk of this struggle as a freelancer predates my cancer issues, with the irony being that I was a hair’s breath away from getting a permanent gig leading a staff of creatives just as the hammer fell.

Who Am I?

It wouldn’t be the first time that I felt the need to rebrand myself. Or at least, it wouldn’t be the first time I made the attempt to rebrand myself. When I made the decision to leave commercial production behind, I imagined that I would be able to subsidize my writing habit by proving myself as the lone pillar of integrity in sales for credit card processing services. I trained in the industry, started my blog about it and even began writing a book — ironically, again, making the announcement about the book on my processing blog just before getting that diagnosis.

It’s a recurrent theme here, how the cancer has derailed my projects, stalled my objectives, been an all-too-convenient roadblock to my success. Facing the facts, however, I could not continue to work as a sales agent any more than I could have taken one of those jobs heading a department in a production company or agency. Plus, I’m generally lousy at sales because I refuse to convince people they need something they don’t or that there is a compelling reason to switch services when there isn’t. I do still set up new clients when they approach me, usually through word of mouth or because they liked the candor on my blog, but I found it is even more time-consuming and less reliable to struggle in highly competitive sales than to pursue work much, much closer to my heart. Cue the need for new letterhead.

I have been a freelancer since I was in high school. Sure, there have been steady jobs along the way, but contract work has been a consistent part of my professional life. I’ve done a wide variety of work, filled many disparate roles, enjoyed a minor amount of creative success and tried never to repeat myself. That all sounds great, too, but it meant that I was scattered, my résumé all over the place, no clear way to determine what job I was best suited for… I had spent so much time filling different niches, there was no clear niche that I could obviously fill.

Paying Attention to Recurring Themes

Pumpkin SquareIn November of 2014, something amazing happened to my career path. What had been zig-zagging about for decades, searching for focus or purpose or an overriding directive, finally smashed headlong into a wall of clarity. For months I had been floundering, watching opportunities vanish or drowning in that fabled Sea of Uncertainty as the vessel of my own unmaking sank and threatened to pull me down with it. But then, there it was, clear as anything I have ever seen: Stage 4 Lung Cancer. Most everyone to whom I said those words heard some version of a death sentence during those first weeks or months, but to me, they were a simple mandate. It would take time, I knew; time during which I had to stick with the Old Guard as much as possible, but it was impossible to deny that things had changed.

The struggles would only get harder, at least the practical ones of daily life. Not being able to earn from a steady job is particularly difficult from multiple perspectives: family responsibility, promises made and futures envisioned; societal expectations, breadwinning and the pride of providership; sanity, security and routine. But I saw it then, unmistakably, that I had not only a niche of my own, but a purpose to my work, an actual mission. This was not merely about rebranding myself, it was about affecting positive change and helping to reshape the way people experience an increasingly prominent aspect of all our lives. But it wasn’t the sort of thing that I could just put on business cards and start getting hired for. There is no area of “job opportunities” for what I offer. I’m like an artist looking for that benefactor who believes in the value of my work, while I construct incremental, miniature versions of my masterpiece in an attempt to get by.

I work on my book, something that consistently changes shape as it searches to understand its own ending, which it cannot yet do because it requires a level of certainty about my condition that is only now coming into focus. But if this is work with value, and every thread that runs through me plucks this same chord, it needs to be the focus of my career and central to countering the financial weight that is the other side of this scale.

I thought about using something Kickstarter-esque to get my book completed, but that only works if I wanted to self-publish it, or knew it could be completed in a set block of time, or if I knew, really, what the cost would be to complete the book and then fulfill rewards… But this approach was not really practical for my situation. Now I know I am much closer to being able to solidify the book’s structure, and the process of working on it is going to require more time and direction. At the same time, this blog has transcended just being a personal way to share my experience while developing my ideas and it has become an important tool for education and outreach, a means of delivering hope and inspiration to others while staying rooted in pragmatism and science; it is directly helping people I have never met and actively functioning to reshape the Cancer narrative.

So when I am on the phone disputing billing issues with my medical group, pounding on (virtual) doors to drum up work as a copywriter or get some other freelance gig, or when I am slamming my head against some proverbial plank and one of my friends suggests I set up “one of those web sites” to ask for help, I think: I have something of value to offer. And I know it would be worth paying for. This puts me at a crossroads, because this blog, which is the focus of creative passion in my life and the crux of where “my brand” has been forming, costs money to host and time to manage. But I want the content to remain free to access, to be there for the people who need it most (and I’m not just talking to my mom, here). There is, fortunately, a solution that satisfies my conflicting needs to retain open, free readability of the blog and the ability to monetize this work for readers who can afford it and maybe want access to some additional, value-added content.

My account on Patreon is now active. It is a way to support me, to support the work I am doing, and to get access to even more of it. Rather than asking for large, single pledges or donations to offset my expenses, I’m treating this blog like it should be, as my job. Supporting me on Patreon is simple: patrons can pledge a small amount per month, as little as $1 or as much as they would like, and they can change the amount at any time. And if you do pledge to support this work, I’ll be creating additional material that is only accessible through the Patreon site, including advance drafts of chapters from my book, unique interviews and more. Subscribers will be eligible for access to my long-planned podcast, too, which I have been looking forward to putting out there. Plus, my gratitude will probably inspire me to create even better material. So that’s something to consider.

What It Will Mean for this Blog

Initially, there will be little difference in Just Bad for You as we know it. I always strive to add meaningful posts about my personal experience with insight (hopefully) into larger issues. But if I get enough subscribers willing to pay for what they read, even if it is just $1 or $5 per month or whatever, there will be a shift to more research-intensive articles, interviews, and potentially, patient and provider profiles that can broaden the experiences being related beyond just my own perspective. Also, I am anxious to dump the mostly useless advertising that, so far, has completely failed to offset the costs of operation.

I will probably find the time to post more often because with a large enough readership I will be able to be more selective about which soul-crushing gig I squander my talents for in an attempt to make ends meet; that translates to keeping my best work on the table here, for all to feast from. But some juicy morsels will, of course, be reserved for that spot on Patreon where I will have to fulfill the promise of adding value for my supporters.

The costs of cancer still loom heavily, certainly, but as long as I am able to create, I am dedicated to working and earning — and offering something back for every dime or dollar. My struggle isn’t in need of a one-time fix; I don’t have a single set of bills hanging over me that would make a GoFundMe page sensible as it has been for some of my friends (feel free to send me $400 through that PayPal “donate” button if you really want to, because I’m pretty sure I either owe it to somebody now or I’m about to). What I am doing is making this my job, my career, and asking my readers to pay what they can, even if it is nothing at all. I refuse to look at the financial burden as a Sword of Damocles dangling over the luxurious life of a cancer writer. Rather, it is time to simply make the shift, as many musicians, filmmakers and other writers have before me, to acknowledge that I am creating something unique and valuable and hopefully lasting. I want everyone to read my work and to share it and enjoy the words I put down on the page. And if you, the reader, find meaning there, that will remain the greatest payment of all.


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