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
At 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!
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
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
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
It’s after Labor Day in the US, where virtually every child of age is back in school, starting a new grade and most working adults just enjoyed an extended weekend. No doubt there were hundreds of thousands of barbecues burning across the nation, millions of beers consumed, parades, parties and many people striving to eek out a few extra hours of morning sleep while luxuriating in the rare Monday off. But by Tuesday morning, Wednesday at the latest, almost every American family was back to the grind.
When we talk about the business of living, about engaging in life, the emphasis is on participation. The act of being. But what is the point of being present if we are not able to grapple with the simple element of happiness? After all, as dire as life might seem, happiness is the one thing that can truly give it purpose.
The Happiness Ride
Continue reading Happiness
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.
Continue reading On Being a Jack-Ass and Accepting that You Are Loved