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?
Tag Archives: Reason
The Chemo Diaries: Year 3 Begins!
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.
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.
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!
Breathe Free Walk 2016 Recap
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.
Since returning to Los Angeles, I continued to participate in Lung Cancer Awareness Month by attending the Shine a Light event hosted by Huntington Memorial Hospital, where I had been a speaker last year.
Gratitude, Thanks and Appreciation
The Breathe Free Walk to End Lung Cancer
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
Chemotherapy Horrors for Halloween and the Truth About Cancer
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.
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?
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?
The End of Life and How to Die
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
Support My Site in September and get My Book Free!
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!
Keeping Track, Necessary Evil
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
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