This is an excerpt of my podcast, The Deep Breath. To hear the full 24 glorious minutes, including the explanation for my especially raspy voice (hint, it isn’t because of the cancer), please follow this link to my Patreon Page that hosts the podcasts. In celebration of Thanksgiving and the upcoming completion of 24 months of chemotherapy (there does seem to be a theme to the numbers here), this episode is completely free to listen to even if you are not yet one of my subscribers and patrons of this site.
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It’s been over a week now since I spoke at the First Annual Breathe Free Walk to End Lung Cancer, which gave me a unique opportunity to connect with a few caregivers and fellow patients. I was honored to be able to offer some (non-medical) advice and reassurance, as well as to hear the heartfelt stories that I was lucky enough to have shared with me. Although I previously posted the transcript of my short speech, I’m including a video of it below, along with the opening remarks provided by the event’s beneficiaries, the American Lung Association and the American Cancer Society.
I am speaking at the First Annual Breathe Free Walk to End Lung Cancer sponsored by the American Lung Association and the American Cancer Society. The walk is designed to raise awareness of Lung Cancer and funding for research. Following is a transcript of my brief comments to take place before the walk.
November 6, 2016 : Opening Remarks for the Breathe Free Walk to End Lung Cancer, Fort Mill, South Carolina
I’m pretty darn happy to be here. Two years ago today, I was diagnosed with inoperable metastatic adenocarcinoma, more commonly referred to under the umbrella term of Stage IV Lung Cancer. As a relatively young non-smoker who ate healthy food and led an active lifestyle, took my vitamins and got plenty of sleep, you might imagine that this diagnosis was a bit of a surprise. But if you’ve followed my story on my blog, as I know some of you have, then you also know that when I started this journey I did so with a substantial amount of faith. That same faith is shared by the organizations sponsoring this event, and by proxy, it is shared by you who have come here today. And that is faith in modern medical science.
We all have faith in lots of things. And there are different types of faith, to be certain. Spiritual faith often plays a key role in the emotional health of patients, perhaps making it possible for them to endure difficult treatments or to remind them that there is something greater of which they are an important part. Faith in our friends and family can be essential as we worry about things we may not be able to take care of on our own, even for those of us who have a hard time leaning on others. These expressions of faith, they allow us to trust in some kind of a safety net that will be there in the event that we are pushed or slip or even jump headlong. And undergoing treatment can feel any of those ways. Continue reading The Breathe Free Walk to End Lung Cancer→
After the interview with Olivia of CN2 News in South Carolina.
I was fortunate enough this morning to have reasonably good hair and a beautiful background for a quickly set-up interview in support of this weekend’s Breathe Free Walk to End Lung Cancer. The walk is taking place this Sunday afternoon, the “first annual” fundraising event co-sponsored by the American Lung Association and the American Cancer Society.
If you check back on Sunday, I’ll be posting the speech that will lead off the walk. There is a chance that the local news will be back to cover it, and maybe they will end up airing a bit more of the interview we did today. Below is the one-minute clip that aired during the newscast.
https://vimeo.com/190312571
November is Lung Cancer Awareness Month.
I look forward to leading off the First Annual Breathe Free Walk To End Lung Cancer in Fort Mill, South Carolina. It is exciting to be a part of a new awareness campaign, and I’m especially proud that my mother has organized this walk. She brought the concept to the co-sponsors earlier this year and worked with them, as well as local organizations to get the walk set up in time for Lung Cancer Awareness Month.
Join the Breathe Free Walk to End Lung 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.
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.
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!→
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→
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.
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→
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
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→
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.
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→
