Tag Archives: Cancer

Chemotherapy Horrors for Halloween and the Truth About Cancer

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I take the commitment of a Halloween costume seriously. When I was a kid playing with stage makeup, I made myself look like I had been beaten so badly one Halloween that people forgot I was in costume and wanted to take me to the hospital. This year, I contemplated going as my cancer diagnosis. It seemed appropriate, after all, because I had the serendipity of getting my infusion on Halloween day this year. Just seemed perfect. But then I was thinking about it and, quite frankly, cancer just isn’t as scary as it used to be.

Just Give Me Candy
Because nothing delivers the scares like a guy in an orange shirt.

So I went with the most frightening costume I could come up with: a candy fiend. After all, little is as horrifying as someone coming off of a sugar binge. And my paunch is perfectly highlighted by the tight-fitting shirt that I have now worn for somewhere in the range of 6 to 10 Halloweens. (What can I say, some things are simply classically insidious.)

While a few years ago the idea of a giant tumor might have been amusing to me, and the notion of cancer in general seemed like a properly frightful subject, the story around these has changed for me. Hollywood, of course, still relies on cancer as it’s go-to meme for unsettling disease requirements, but then Hollywood is creatively lazy and uses the most basic shorthand it has for easy emotional manipulation.

The Truth About Cancer Continue reading Chemotherapy Horrors for Halloween and the Truth About Cancer →

WHO on EMF and EHS – Will Wi-Fi Cause Cancer?

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In this modern world, there are plenty of reasons to be cautious. Digital devices almost seem to control our lives. They take up our time, luring us into the virtual world for entertainment, allowing us to be more productive by keeping us linked to our work 24/7, lulling us into a world of social networking that never requires us to physically interact with other humans. It is no wonder that authors of speculative fiction depict alternative worlds where we are literally plugged in.

In offices and homes across the developed world, it is more likely than not that there will be active Wi-Fi or Bluetooth connections running all day long, often from multiple devices. In the past twenty years, as wireless connections have become more prevalent, concerns have been increasingly raised about their safety. The World Health Organization (WHO) took notice in the late 90s and began looking at all the evidence that was piling up from studies in many countries. Key to this awareness were the growing trend of Electromagnetic Hyper Sensitivity (EHS) and the concern that Electromagnetic Frequencies (EMF) could cause cancer.

Continue reading WHO on EMF and EHS – Will Wi-Fi Cause Cancer? →

Support My Site in September and get My Book Free!

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Staring at my budget with blurred eyes and a brain addled by a host of fun chemicals, I have to pinch myself and remind myself there are reasons that I chose the long game; there are reasons I passed over GoFundMe or GiveForward or any of the other single-goal fundraising websites my friends have used wisely to bridge specific financial gaps. I’ve seen those sites work super effectively, raising $3,000 or more in less than a week while targeting figures high enough to cover a host of potential costs ahead. For those friends, who would be “out of the woods” in a few months or so, where all their resources will be expended in a concentrated time, I think the outreach and the community reciprocity is amazing and a great testament to compassion within our social groups. But I’m not hard-wired that way, and my condition is not so neatly tied up in a closed time-frame.

Longer stretch, earning smaller frequent support goals

img_20151130_120725At this point, though it could change, I am on this merry-go-round every three weeks until I die — preferably quite a few years from now. And while I am still riding my chosen horse (a big, jet-black unicorn with a dangerously sharp silver horn, if you must know), I have a lot that I want to accomplish. I can’t manage a job for more than an hour or two most mornings, so I haven’t been traditionally employed for over two years. And yet, I have so much work to do! Like my book on living well with advanced cancer, getting on with life in spite of new limitations and finding the very best of ourselves along theway. Continue reading Support My Site in September and get My Book Free! →

Keeping Track, Necessary Evil

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Since I began chemotherapy, I’ve been maintaining a casual log of my symptoms. It’s one of those things that I will generally spare my readers, not only because it is occasionally gross, but because it really isn’t relevant. There are so many potential little side-effects, ranging from the innocuous to the downright ludicrous and back to the mildly irritable that one person’s experience will never directly relate to another’s. Certainly, there are the big ugly days that speckle themselves in there, but my log focuses on the annoyances.

Here’s why: it is a reminder of how little these things actually matter in the big picture. It also gives me a touchstone for meetings with my oncologist. We need something to talk about, after all, and then I need some reason to feel like an idiot for bitching about the balls of my feet feeling puffy or my nose being dry. Because, at the end of the day, it’s actually worse to have the flu. And I mean that, in a very practical sense, because I often compare my symptoms to being on the verge of getting the stomach flu. It can be unpleasant, but it could be much more unpleasant. Now, I will say this was not always the case. The first three months arguably had weeks peppered in that were worse than the flu I suffered through as a kid. But after my first six rounds of hardcore chemo, the veil of doom was lifted and I entered Walk in the Park Land.

Okay, Walk in the Park Land may not be an entirely accurate description, but by comparison that is how maintenance therapy initially felt.  Continue reading Keeping Track, Necessary Evil →

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 →