I recently had the good fortune of interviewing a long-time friend and fellow Stage 4 cancer patient for my podcast, The Deep Breath. Usually, the podcast is just me running off at the mouth, dispensing my heavily biased advice or addressing questions that have come up in one way or another. Sometimes I just talk about my personal experience. My best (or at least my own favorite) recordings are those in which I interview someone with a different perspective than my own or from whom I can learn something interesting. This one was different, though, and required a different treatment.
When I think of Mike, I always imagine him as he was in high school. That is mostly due to the fact that I’ve only seen him a scant handful of times over the past 30 years, and none of those were particularly recent. We have stayed in contact primarily because of social media, both of us being part of a wide group of shared friends who have remained more or less civil toward one another even as we have spread apart geographically, politically and, outside of these virtual networks, socially. His story began to intertwine more tightly with my own about a year ago when he announced on Facebook that he had been diagnosed with colon cancer and was about to embark upon an uncertain course of treatment with chemotherapy. Continue reading Luck and Attention→
As a cancer patient on regular rounds of chemotherapy, this is a question that I have often asked myself. When I look in the mirror and see a body that I don’t recognize and the effects of the drugs on my brain have me under a heavy fog of malaise, it is easy to drop into the trap of defeatism. I have stared into my own eyes, wondering what had become of their prior yearning or that sly glint I imagined they used to have, and asked the mirror if this is what it feels like to die. To waste away into a reflection of what I was. To effectively disappear from the world, slowly, margin by margin, breath by breath. Continue reading Is This What Dying Feels Like?→
Some days I just don’t know why I have a good cry. I mean, I suspect the chemo in my system has a lot to do with it — I’m always more emotionally “available” after an infusion, which translates into a rapid response to whatever I am reading, listening to, or seeing. My switches flip readily, often without the usual filters I keep in place having any effect. Usually, I will have a tip off that a trigger is going to fire, but on days like this one I am often caught off-guard completely by something I would normally call a throw-away, an off-hand comment I’ve read before, perhaps, or a quote hidden deep in a piece of reporting. And then I find myself weeping, my head in my hands, just feeling the release of whatever emotions have been mixing it up biochemically with any lagging fears, doubts, or anxieties I haven’t otherwise already worked out.
It is on days like this that I really just want to focus on:
Fun Facts about my Unique Chemotherapy Experience!
December 2014 marked the beginning of my chemotherapy, and two full years are now complete. This already puts me well beyond the “statistical expectation” for continuing to kick around, allowing me to enjoy another holiday season with my family and, for better or worse, getting me closer to my goal of actually going back to work full-time at some point in the (hopefully not too distant) future. A third year on chemotherapy may have seemed like a remote option at one point, something that was a distant hope not to be taken for granted, but now is an accepted part of my ongoing plan, the “new normal” that has been often talked about, what I have simply become quite used to in my daily existence.
Me walking around Disneyland with pneumonia while celebrating the results of my most recent CT scan.
So I take a moment to sit in my gratitude for what modern medical science has afforded me. As I write this, I am one day past my infusion, feeling only moderately tired because I woke at 3:30am and was unable to get back to sleep due to the way my steroids get my brain spinning in the night. Ironically, that same effect does not seem to occur during the day, when my mental capacities tend more toward fatigue and fog as the hours progress. Chalk that incongruity up to sleep deprivation, I suppose. The good news is that the steroids will have mostly worn off by tonight and, with any luck, I’ll be back to sleeping — or at least being able to go back to sleep — mostly through the night.
And yes, I went on plenty of rides. Can’t get me enough of those perilous romps through neon storybooks.
A month or two ago, I had a discussion with my oncologist about how I felt fewer side effects from the chemo, as though it had become progressively easier for me to tolerate over the past year, and especially over recent months. It gave him pause because, he informed me, the body does not generally “learn” to process the chemotherapy drugs more efficiently and patients do not build up a tolerance to the chemicals. If that were happening, for whatever reason, it might indicate that the drugs would no longer work due to being processed out of the system too rapidly. My most recent scan, taken last month, clearly indicated that the chemotherapy is still working the same that it had been — so obviously the infusions are effective at doing what they are supposed to be doing. The observation that I am left with, then, is that most likely I am simply used to dealing with the symptoms to a greater degree. Drilling down a bit more, however, there have been a few changes made in my routine after the infusion, specifically trying to be more active even on my more difficult days. My oncologist confirmed that this approach was most likely responsible for how I am “recovering more quickly” than I had been earlier in my treatment. Continue reading The Chemo Diaries: Year 3 Begins!→
It’s hard these days to get away from the media barrage about all the perks a patient or caregiver gets out of a cancer diagnosis. Heck, with all the promised government handouts, it seems like everyone is going to want to get in on the action. But it is important to realize, in spite of all the hype to the contrary, that there is, in fact, a downside to cancer.
Why You May Want To Avoid Cancer
It’s true that easy access to handicapped parking can make life a lot easier, and a significant progression of disease is a sure-fire way to qualify for fancy license plates or those special passes you can hang from your rearview mirror. Some cancer diagnoses are practically like getting free money thanks to liberal disability benefits. But did you know that to take advantage of these special opportunities, a patient is required to spend literally hours of his or her personal time filling out paperwork? As if it weren’t bad enough dealing with the required documents and dancing through flimsy strands of red tape, the patient must also keep payroll records, IRS forms, and proof of the medical condition. Warning: if you hate paperwork and record-keeping, cancer may not be for you!
Settling in for a long winter’s nap.
While we are on the topic of busy work, it is probably important to mention other ways in which cancer can suck your time away. Treatment is time-consuming. While this well-kept secret is the shame of the medical community, it is undeniable that doctors, clinics and pharmaceutical companies have conspired to generate lots and lots of billable hours in the form of repeated scans, surgeries that require lengthy hospital stays, and infusions that can take up to ten hours at a time — and then have to be repeated over and over again. This doesn’t even touch on going in for biopsies, radiotherapy or any of the ancillary tests that might be required to “ensure a complete understanding” of a patient’s condition. Warning: if you have other things you’d rather do with your time, cancer may not be for you!Continue reading The Downside to Cancer→
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.
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.
I was going to write about working without wearing any pants, and how pantsless careers are sort of ideal, but instead I am going to offer some thoughts on death and dying.
Most of my mornings begin like this: the low-impact sport of serving up espresso drinks at my daughter’s school followed by a cool down period of errands on the way home. Sometimes, since this is Los Angeles and there is always a bit of traffic to contend with, I have time for a phone conversation or to catch up on my quota of NPR. The ride home also gives me time to ruminate on important issues and subjects for my blog. Sometimes a conversation sparks a new thought process, twists the direction I had planned on going or otherwise derails what would have been a perfectly good fluff piece. By way of example, I recently conversed with my mother about my father’s final days, thus running the train of intention for this post completely off the rails. Continue reading The End of Life and How to Die→
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!→
