I’ve lived with a fear of going blind my entire adult life. As a writer and filmmaker, vision has always seemed essential for my career, an important tool in the creation process. But my father lost the majority of his sight, inexplicably and very slowly, as I emerged into adulthood — his retinas detaching in both eyes with doctors unable to either figure out why or stop the process. Just as my identity as an artist and my career aspirations were taking hold, he was pushed into an uneasy acceptance of his fate that left him bitter, angry, and defiant. I watched this, mostly from afar, and never could shake the question of whether the condition would prove hereditary. Then I became a cancer patient and began chemotherapy, knowing full-well that it very likely would affect my eyesight.
Two days ago, I realized that I couldn’t focus with my right eye.
It’s nothing new for me to have a passing problem with my vision. Yes, my prescription had remained the same for over ten years — my glasses gave me better than 20/20 vision and I was content to wear them, never considering surgery to correct my vision. Six years ago, my daughter had inadvertently elbowed me in my left eye, causing the retina to scar and several ophthalmologists had prepared me for the likelihood that the retina would detach at that time. Admittedly, I was freaked out, and over the course of two years, my retina was heavily monitored as doctors prepared a means of preserving my vision in that eye. The scarring was carefully observed and then it did the most unexpected thing: it healed itself. Where there had been fuzzy abnormalities in the center of my vision, one day everything was more or less clear and back to normal. I breathed a sigh of relief and eventually stopped going back to the eye clinic. My prescription remained unaltered. Continue reading Fear of Fading Vision – Losing Eyesight, or Just Losing Sight of What Matters→
Through the wonder that is Social Media, I’ve connected to a wide range of people with their own personal cancer stories. As an extension to this blog, and as part of the research for both a broader understanding of the treatment options out there in the big, wide world, and the book I have been slowly developing to help guide future patients and caregivers through this often difficult and confusing process, I have been collecting interviews from a growing pool of diverse perspectives. Most of these interviews end up in my Patreon feed, where my podcast/video blog has its official home.
One of my recent acquaintances was the wonderful Lizz, who writes a lively blog called The Drop Off, which recently acquired the subtitle of “TRAVERSING THE INCURABLE, HELP AND HUMOUR FROM A CANCER SUFFERS WIFE.”
I just put about two weeks’ worth of coffee into my body, so please consider that as you read these proposed guidelines for political postings on social media.
I decided to put these down because I have noticed so many friends falling off toward these two camps: those who are tuning out completely due to political news fatigue and those who are spun up into a frenzy of posting and reposting and forwarding and generally being outraged all the time (or at least every fifteen minutes between the odd stress-reducing cute animal pic or positivity meme).
The fact is, neither approach is helpful, and probably not healthy, either. We should all remain engaged, after all, or at least aware of what is going on around us. But we should not get lost in the process, nor should we be a part of the system of misinformation that has plagued our national politics for a long, long time. (That’s right, it is almost a national treasure, this “fake news” thing, and it goes right back to the beginning of our country’s history. That it appears to have reached some new apex in the past year is something of a natural progression, albeit a sad one. The challenge now is for the media to really keep it in check as it had done, more or less, for the past 120-ish years since the Hearst-induced Spanish-American War.)
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!→
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!→
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.