Category Archives: Cancer

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

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

Meant To Be

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On a recent morning commute, I was stuck behind a car that I coveted. It was only for a moment before traffic split off and I chugged ahead in my aging vehicle, but it was enough time for my brain to process this thought: “well, if I was meant to have a car like that…” If only it was meant to be. I caught myself, teetering on the precipice of that trap, and yanked myself back before slipping all the way over the edge.

If only it was meant to be.

The notion that anything in our lives was meant to be is a dangerous concept. People use it to soothe their despair, to give meaning to tragedy or otherwise cope in circumstances that they feel powerless over. But it is a notion that suggests that we should also give up, give in or otherwise simply accept that truly shitty things are meant for us, while other people are meant for luxury or power or even just a simple happiness of some sort that is uniquely theirs. It suggests that if we do not have that good stuff, we do not deserve it, but that whatever crap we are coated in is truly, divinely ours. Continue reading Meant To Be →

On Being a Jack-Ass and Accepting that You Are Loved

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When we are going through difficult times, it is easy to get lost in the mess of it all. It’s easy to get depressed, to surround ourselves with thoughts of doom, to hide in the shadows. What is not so easy is getting our weary selves out into the light, to wear the smile that reminds us of the joy lurking around unexpected corners, and to keep focusing on the true business of living that we really ought to be engaged in at every available moment.

Every now and again, we need to be reminded about all of this, each of us. And it is great when we stumble across a voice that speaks to us in a way that cuts through the BS. I am going to share a piece of writing that, I think, speaks a bit of clear truth that is worth paying attention to.

The following was written by Eugene Belitsky, posting to his Facebook feed. I “met” Eugene through Facebook, I suppose, after I read some post of his (or maybe he read one of mine). It’s only been about a month, but I’m claiming chemo brain for not remembering; all I can say is that he inspired me with the way he was dealing with his recent cancer diagnosis, refusing to let that diagnosis deprive him of his humor and his joy. And I saw some similarities in our lives: we both have a young child, we both dislike snake oil salesmen and I think we have a similar sense of humor. So I have followed Eugene’s story and then about three weeks into our deepening relationship, he wrote this wizz-dinger. I immediately told him I wanted to post it here. Fortunately for you, he graciously replied that, indeed, I could. Eugene Gives Permission!

Eugene Belitsky

August 25, 2016 at 6:58pm ·

Continue reading On Being a Jack-Ass and Accepting that You Are Loved →

Death, Life and Tissue Paradise

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Death, Life and Tissue Paradise

I reiterate the title intentionally.
Tissue lying on the floor
Shortly before reaching Paradise.

Death and dying have been on my mind lately. I recently interviewed a friend about the experience of losing her mother to cancer. I am planning an interview with a death doula, whose job it is to help people through the process of dying. And one recent morning, I spent a good deal of time mulling things over from a religious perspective, thanks to my daughter and her explanation as to how a particular used tissue ended up on the floor instead of in the wastebasket.

When I asked her how it got there, my daughter took the opportunity to concoct a whole creation story for her tissue. At the end of this story, sad as the tissues eventual demise was, it ended up going to a Tissue Paradise where it was reunited with all the other tissues with which it had once been packed. It was an interesting and inspirational twist, ultimately bringing much joy to the tissues (and to my daughter, who was convinced that her cleverness trumped my passive-aggressive attempt to get her to clean up after herself). Continue reading Death, Life and Tissue Paradise →

Clearing the Roof

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The past two weeks wore on me; at times, I felt like I could drown in the pool of stress I had been slowly sweating out of me, a thick quagmire created of my own internal angst that seemed to engulf me from all sides. I’ve drained that pool in the last couple of days after trying a little exercise I like to call Clearing the Roof. Because I realized that stress is a top-down issue, it was going to have to be dealt with right up there, on the roof, where all that clutter and debris had been sitting, decomposing into mucky, thick, unmanageable gunk. Some of it was fresh, identifiable, easily swept away. Some of it had been there for years and was entirely unrecognizable. A whole lot of it, it turned out, was just settled pollution, junk particles that had come to rest because nothing had ever washed them away. It had been a much longer time than I thought since I had done this kind of personal maintenance.

Good thing I had a tall ladder.

But first, some backstory: For years I have talked about the importance of letting go of stress. I have let it eat at me in the past while I absorbed it from other people like an emotional sponge and the effect is that it triggers very strange migraine effects that mess with the speech center in my brain, causes a blind spot that travels across my field of vision and has, on one particular occasion, caused a trans ischemic event that, for those unfamiliar with the term, is kind of like a small stroke during which I lost control of my body, hallucinated that the table full of Happy Hour beer and appetizers was bouncing around, tossing things at me, and then I could not make sentences that anyone (else) could understand for about twenty minutes while my left hand tried repeatedly to climb up my chest. Continue reading Clearing the Roof →

Wrist wrapped for chemotherapy infusion

Infusions With Friends

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There is room for a great social media app here, so officially I’m announcing “Infusions With Friends” — everyone needs a game to play while they’re stuck in treatment and when you begin to realize how many people are not only going through chemotherapy at the same time as you, but often having their treatment on the same day, it just makes sense that we ought to be able to hook up and make a game out of it. And if for whatever reason, one or another of us cannot join in the treatment fun as scheduled, it still is nice to have a way to feel inclusive and play along from home.

Chemotherapy infusion tube taped to wrist
The free hand was holding a smartphone and could have been playing Infusions With Friends!

When I got up this morning, I anticipated that two of my friends were likely to be “joining” me in chemo today — one from a a state to the north, one well to the east. It felt good, like there was some camaraderie there, full of mutual encouragement and good times, opportunities to share the view on Facebook or comment on how the mornings were spent with family before going in. And I usually find room for a few jokes around a “cocktail” theme or to comment on the need for better spa services. Sure, my material is starting to wear a little thin, which is all the more reason to get an appropriate app to market quickly. And the play at home feature would have been especially useful for me today, as I discovered that neither of my friends would be joining in from their respective clinics. One was simply a scheduling difference — she goes in tomorrow. The other had some issues with his bloodwork; last week when the same issue prevented his treatment, I thought he had simply lucked out with a week-long vacation from treatment, and I was secretly excited to get him on my schedule because I’m selfish and bored sometimes. So here I was this morning, luxuriously relaxing in my heated, vibrating lounge chair, feeling vaguely lonely in spite of the cheerful nurses and their needles. Continue reading Infusions With Friends →

Guns or Cancer, Which is Better?

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I don’t normally write about guns, but soon it will be gun violence awareness day, so it seems appropriate to throw my two cents in. After all, I like shooting guns, and I like talking about the law. Plus, you know, I have a terminal cancer diagnosis, so it just kind of makes sense.

I recently read two similar news stories about a pair of women who were killed mere days apart: one was deliberately shot by a stranger after leaving a rural vacation spot, and another was shot in the back when her toddler found a gun in the car while they were driving. Pure coincidence that both of those happened close together in Wisconsin, a state I used to live just over the border from, and happened within a week of each other with two mothers being shot and killed while driving with their children in the car. Otherwise, one was a presumably intentional (if random) murder by a horrible person, the other a very random (and presumably inadvertent) act by an innocent.

I’d love to say that the random shooting of mothers by their small children was a complete outlier, but it isn’t. Sadly, this sort of thing happens far too frequently, even among responsible gun-owners and pro-gun advocates — even while they are driving. Of course, not all toddlers who come across guns shoot their mothers. Sometimes, and I find this part deeply, deeply sad, they simply shoot themselves because a loaded gun was within reach. (For those of you who did not or could not click that last link, it details four cases where toddlers shot and killed themselves during the same week last month, in addition to five non-fatal accidental shootings by minors.)

And that is a clear example of what is wrong with current gun regulation. Continue reading Guns or Cancer, Which is Better? →

Myth of the Wellness Warrior, Part 2: Supplements, Denial and the Birthday Problem

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I’ve heard a lot lately about fears that a conspiracy is being perpetrated by the pharmaceutical industry and the government to keep natural cancer cures (and natural or holistic care in general) away from patients. It makes for a dramatic story with lots of Hollywood appeal, but examining the accusations leads down a more insidious path. To get there and understand the full extent of the problem, we need to step back and look at a range of sub-industries within the healthcare umbrella, what they provide and how they intertwine. We also need to understand some basics about statistics and probability that will clarify what some of the facts surrounding this conspiracy really mean. [And when you are done reading this, please continue on with the next chapter in this ongoing series.]

Supplementing the Truth

To begin with, let’s examine the hugely profitable supplements industry (mentioned in Forbes’ SportsMoney column as one of the fastest growing industries in the world). “Natural health” advocates and self-proclaimed gurus often have their own supplement brands which they sell as part of  treatment plans pushed on their web sites, or they have affiliate arrangements with a brand that they offer as being somehow superior to other brands. The supplement industry has grown from the notion that manufactured (or synthetic) vitamins could be used to supplement areas in the diet where a person was not able to consume adequate quantities to be healthy. In an indirect way, it can be traced back hundreds of years to the discovery that citrus fruit — particularly lemons — could prevent sailors from getting scurvy. It turned out that scurvy was a disease caused by a Vitamin C deficiency. By “supplementing” this vitamin, the disease could be avoided. Continue reading Myth of the Wellness Warrior, Part 2: Supplements, Denial and the Birthday Problem →

The Chemo Diaries: The Worst Day

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With chemotherapy, there is one thing that is certain from cycle to cycle: there is always a dance between the predictable and the unpredictable. Which is to say, much of what a patient goes through can be anticipated, but there is always the possibility of a subtle or surprising change. We plan out our schedule as best we can based on previous experience, but sometimes — perhaps every time — we need to roll with how our bodies react.

Breakfast at my desk
Breakfast at my desk

I had my infusion on Monday (as is my preference). For the past year, it has been safe to say that Thursday (today) would be my “worst” day. I should be feeling the effects in my head and my gut right now, full force; I should be tired, irritable, woozy, even slightly sick to my stomach. I should be curled up on the couch or wanting very much to be there. But I’m eating a bagel at my desk and typing this and ruminating on going out for a burger. And I’m doing the household laundry, a whole week’s worth, but that’s another story.

My last chemo cycle was pretty close to normal, but I started feeling crappy a day early and finished feeling crappy a day early, all more or less. It improved that weekend, because I was more active and felt better by Saturday. I like that as a trend and hope that this weekend is quickly cleared up — especially because the weekend after my next infusion has a camping trip clearly written on the calendar. This is a precedent I can get behind. Yesterday, however, rather than having me feeling crappy a day early, I barely felt crappy at all. It is certainly enough to give me pause. But there may be a very obvious reason for why I’m feeling better (or at least less ill) this time around. Continue reading The Chemo Diaries: The Worst Day →

Talking About Life While Facing Death

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One of my more popular contributions to the Quora.com web site deals briefly with how we approach loss and watching a loved one die from cancer. This is a subset of one of the most important topics of my blog, the need to redefine the narrative of cancer. Stories that we hear and those we tell ourselves are very important in terms of how we approach and understand the world. For most of history, the narrative of cancer has been relayed in a fairly dreadful manner — and often rightfully so, because the story of the times was perhaps simply accurate. But the time we are living in now requires a reboot of that narrative, one with more optimism and hope and, more importantly than even that, a good, solid dose of actual science. Another thing that needs to be adjusted, I believe, is more of a societal approach to the empathy of death and dying and how that can be embraced as a natural, even welcome, component of life.

I am clearly not above the occasional inspirational bracelet.
I am clearly not above the occasional inspirational bracelet.

While this is a more complex issue than I can adequately address in this post, I am going to include a short answer I wrote on Quora about a year after my own diagnosis with lung cancer — at which time I had just about reached my “statistical” expectation for life expectancy with a Stage 4 diagnosis. You see, according to the abstract numbers you get through pretty much any Internet search on survival rates, Stage 4 lung cancer does not fair very well. If you believe the numbers, you’re just supposed to die. Quickly. So I did some “soul searching,” and came to terms with what dying might mean to me. Then I moved along because, for one thing, I know a little bit about reading statistics and it was clear that they did not apply to me. (My demographic, for one thing, was not properly represented, nor was the collection of treatments that had been introduced in the previous five to ten years, which is about how out of date most survival rate statistics are when you get them.) Besides, even if cancer was going to negatively impact my longevity, I still had a lot of living to do. And the plan remains to live long enough to die of something else. After all, there is no shortage of ways to exit this existence. The real question, ultimately, becomes not how or why we go, but what we do with our time here that matters. Continue reading Talking About Life While Facing Death →