Fuck Cancer! Embrace Acceptance.
I was diagnosed
Fuck Cancer!
Embrace Acceptance
with multiple myeloma in February of 2016. Specifically, IDG Lambda light chain multiple myeloma, a relatively rare form of this blood marrow based family of cancers.
“I’m here to fight this with you, are you ready to fight with me?”
When my phenomenal oncologist at Kaiser, Dr. Krista Muirhead, (now retired and I believe going back to work in Doctors Without Borders or something similar), first explained to me the term and the meaning of it my initial response was to say, “…it sounds like something you could make the proprietors at like Earthsong in Sebastopol feel guilty that they don’t have in stock yet.. like haven’t you heard that Deepak Chopra recommends everyone get some Lamda Lightchains?!” She laughed and said, “I’m getting your sense of humor now!” And that moment and the one that preceded it when she gave me the, at the time horrifying diagnosis that I had a rare, incurable form of cancer was when she became my North Star throughout the whole experience. As she gave me the news and the existentialism and terror of it was really setting in, she looked me straight in the eye and immediately said,
“I’m here to fight this with you, are you ready to fight with me?”
After that, through all of the many difficulties and treatments, her outstanding “bedside manner”, deep empathy and our shared sense of humor was a constant and rather than dreading visits to her, I always looked forward to them instead. I mean, when someone tolerates my dumb jokes and constant patter, how can I not love them, right?
The details of everything I went through over the past three plus years, may be interesting, but that’s perhaps for some other post(s). My goal here is to mainly talk about all that I’ve gained from the experience as opposed to all that I’ve lost, though I’ve lost quite a bit. But as I told my great, friend since elementary school Mike a few days after my diagnosis, “I feel like the luckiest, unlucky guy in the world”
“I feel like the luckiest, unlucky guy in the world.”
and this was due to the overwhelming feeling that I was being carried, or buoyed upon a river of love and support from all corners of my life. I am both incredibly unlucky to have been attacked by cancer and to have had to deal with the renal failure that the cancer caused, but I’m also unbelievably lucky to have such outstanding, phenomenal love and support of my family and my family of friends.
Treatments
I’ll write briefly about my treatments here and perhaps expand upon them elsewhere because I think another important thing I’d like to get across is the reality of cancer and of all the cutting edge, customized treatments available because of the constant advancement of medical science. Especially since, in this era of counter factual, anti-intellectualism, anti-science and the toxic stew of conspiracy theory wasteland that much of the interwebs has become thanks to the accursed Facebook, YouTube & Twitter, etc. its even more important to promote and stand up for science and pointing to the success of medical science is a perfect way to do that.
Plus, as Creative Director (not my favorite term, but not sure what’s better) of ScienceSites, it is definitely my bag, baby!
For the first year of treatment I was splitting my time between driving down to Terra Linda, CA to receive a twice weekly shot in my belly fat of Valcade and three times a week driving about ten minutes away from my home in Petaluma to Fresinius Diaylisis to receive 3 and a half hours of hemeo-dialysis which kept me alive, but was also terrible for me simultaneously. I was always utterly exhausted after each session and had to take a nap at home afterwards and because I was on a regimen of various other drugs like Revlamid and Decahedron, a powerful steroid I took every other week or so, I was also a fuckin’ nightmare to be around, having no inner editor, believing everything I had to say was like manna from heaven to whomever was listening, eating everything in sight and staying up til 3am firing off 3,000 word email rants to friends.
Cannabis was my friend
My poor wife, her kids and my daughter all suffered tremendously because I wasn’t able to do much more than work at staying alive, though I did have bursts of energy while on the steroids, but a lot of that was just wasted on being a maniac.
At the time, before the California recreational ballot measure passed, medical cannabis was still readily available and came in quite handy, especially for sleeping, even more so when I was hopped up on the ‘roids!
Evidently, I once gave my daughter and her stepsister like a half an hour lecture about why they should hang up their towels and bathmat otherwise they’ll sit there and moulder and that’s no good because reasons… and can’t you see how crucial and important this knowledge is that I’m bestowing upon you now you lucky people you?!!!
Its no wonder then that one result of all of that was that my daughter, given all of the stress and tension she unfortunately was a collateral victim of, decided to go live with her mom full time and has been there ever since. There’s more to it than that and there are other reasons that, sadly my wife and I are getting a divorce, but that’s again perhaps best saved for another post, or… not.
So, my relationships suffered and I physically suffered being hospitalized more than once from pneumonia and high fevers and an electrolyte deficiency and on and on… you get the idea. As an immune compromised person due to the drugs I was on and eventually even more so post bone marrow transplant about a year and half in, I was more susceptible to infections and fever and flu. Another reason that I get so enraged at the thoughtlessness and narcissism of anti-vaxxers who never seem to consider other children let alone immune deficient people when they make their asinine choice to not vaccinate due to thoroughly debunked conspiracy theories!
The Medical Community
This, for me is where the rubber meets the road. Not only was I lucky enough to have the love and support of so many that I mentioned earlier, but I also was lucky in that all of my doctors and nurses, pretty much to a person are some of the most lovely, hyper-intelligent, empathetic people I could ever have hoped to meet and as I’ve told whomever among them will listen, “... it’s a shitty way to meet people, I really can’t recommend it, but I’m also so glad I’ve met you because I wouldn’t have otherwise, so it’s another way in which I feel lucky”.
“... it’s a shitty way to meet people, I really can’t recommend it, but I’m also so glad I’ve met you because I wouldn’t have otherwise, so it’s another way in which I feel lucky”
Also, not fer nuthin’, but most of my doctors at Kaiser, my beloved Dr. Muirhead, my two wonderful nephrologists Dr. Belani and Dr. Holmes, one of my surgeons (whose name I unfortunately can’t recall and can’t seem to find) at UCSF for my recent kidney transplant (a whole other story unto itself), my UCSF Transplant NP, Danielle Kreiger and most of the dialysis nurses/techs at Fresinius, Petaluma are all highly competent, whip smart and super lovely, strong, empathetic women and I can’t emphasize enough how badass and inspiring all of them are to me in one way or another!
I also have to give a shout to the men, Dr. Wen-Kai Weng of Stanford who heads up the BMT (bone marrow therapy) department. Dr. Cardeneau of Kaiser my vascular surgeon who placed the fistula into my left arm that allowed for extended and more effective dialysis, Dr. Roberts at UCSF the head surgeon for my transplant and Dr. Gonzales at Kaiser my GP who initially took the blood work that determined I was badly anemic and who told me to go directly to the ER back in February 2016.
Friends
My friends should, I hope all know who they are. From my dearest oldest group of friends from back in grade school, most of whom are still living back in the Boston area, to my group of Petaluma friends, to the friendships I’ve made at the dialysis center and throughout this experience. All have been wonderfully supportive and lovely to me in their own way. I’m lucky to have all of them in my life and I can’t imagine having gone through any of this alone which unfortunately happens to more people that I believe any of us would like to think about.
Acceptance
This notion of acceptance is without a doubt probably the most important lesson I’ve tried to take and internalize from this whole wretched and inspiring experience. We all expend so much energy in our short lives upon the delusion of control. Control of our lives and particularly to our detriment, control over events and other people. Meanwhile the reality is that the universe really is indifferent and so looking for rhyme or reason is, in my view a pointless waste of time.
As neuroscientists and psychologists often agree, the thing about human consciousness is that its default state is one of pure ambiguity. However we are also “wired” to seek out patterns, which is quite handy in order to gain understanding of the physical world around us, but not so great at navigating the intangibles of life and often times we tend to seek out patterns which while they feel familiar and comfortable are often actually terrible ones that we shouldn’t repeat.
I like to think of this as putting together, say a favorite jigsaw puzzle in a darkened room. You know the puzzle so well and have assembled it so many times that you know how the pieces fit together, you can feel their unique shapes and contours even in the dark. And when those familiar pieces snap into place, its immensely satisfying, so its easy to fool yourself into thinking that something that feels so good is also actually good for you. But more often than not, these familiar patterns are the opposite and they can trip us up again and again if we fail to recognize them for what they are.
Personally, I’m guilty of this myself. In particular when it comes to feelings of self doubt/importer syndrome and even more so in intimate relationships. So, though its not as if I’ve reached or ever will achieve sort of some transcendent state of nirvana and ultimate, harmonious, quantum consciousness or some such Chopra-esque drivel, it has been quite enlightening to finally at least gain some acknowledgement that this tendency is just a natural facet of the human condition and it, along with the acceptance of understanding that which is out of your direct control, which is to say much more of life and living than most would like to admit, is not some failing on my part or on the part of others, but rather, much like the universe, it just is!
Ism-s
My pal Mick, a fantastic dialysis tech, Vietnam Vet, ultra progressive, intelligent, mischievous and hilarious guy once told me a story which I think illustrates this concept so well and which I’ve repeated to anyone who’ll listen.
I’ll be paraphrasing here, but one day having not seen him for a while he came sauntering over to my dialysis chair in his street clothes, obviously just there to visit folks and I said “hey Mick! How’ve ya been!” and he replied with his usual positive cadence, “Ohhh shitty!”, but I could tell he meant it and having heard he’d thrown out his back I thought it was that, but then when I asked “how come?” he said “Ohhh.. liver cancer..” and my face must have dropped cause he quickly followed up with, “.. but it’s okay it’s slow moving and hell I figure if I go, I’ve had a great life, so what do I got to complain about?”.
At which point he launched into the story of how he came to Taoist style acceptance by first encountering Buddhism in quite a dramatic way. At some point during his stint in the Navy, his platoon was in a protracted firefight with the Vietcong and as could often happen, there was a break in the action and the firing ceased between the two sides just in time for a group of Buddhist monks to come sauntering along directly through the line of fire, but closer to the American side. When they got close enough, Mick and his platoon grabbed them into safety and asked the one who spoke the best english, “why did you all walk so slowly through the lines? You must have heard us firing at each other right before you walked through, right?”. Evidently the monk answered, “It would not have changed the outcome..” and Mick’s all of 19yr old mind was absolutely blown!
From there, his interest in Buddhism piquéd, he eventually transitioned to Taoism, which as he described it has no real dogma to speak of as its mostly just about, “Acceptance” and most people can’t grasp it because its so simple that there’s not much to hang yer hat on or get wrapped up into your identity.
Now I’m not going to call myself a Taoist, or really anything at all. Even thinking of myself as an atheist is a bit much if for no other reason than I’d never want to be associated with the militant, high profile atheists like Richard Dawkins and Sam Stein, who both seem in their zeal to defend atheism to be unaware that by doing so they’re engaging in a similar sort of evangelizing they purport to disdain in religion, thereby kind of missing the damn point!
Taosism, or just simply acceptance does have enormous appeal to me though. Mostly because it is so simple and the more I think about it the more it makes sense to me. I’ve had to accept that everything that happened to me didn’t happen for any metaphysical reason, but in the process just learning how to better accept events, life and people as they are as opposed to wishing, hoping, or trying to exert control over how I want them to be fits with my personality and overall philosophy, plus it seems to take way less energy and has given me a measure of peace and calm about everything that I’m not sure I would have come to any other way.
Perhaps most importantly, I’ve learned that just as I try to accept others for how they are, as opposed to idealizing or demonizing them, I cannot tolerate anything less than others accepting me, warts, human foibles, personality quirks and all! This is what new age nincompoops like to call self love I guess, or “wellness” which drives me insane as its so often such an absurdly abused word deployed by such incredibly annoying guru-like dipsticks. Oh don’t get me wrong, its not like I’ve ascended to some higher plane of love, understanding and tolerance for all creatures great and small or anything. No, nope… there are plenty of people and institutions that piss me off and send me into fits on a daily basis. Or am I using Twitter wrong? ;-)
I like to think I’ve got just enough of my east coast edge left such that I’ll never tolerate cognitive bias and the nincompoopery of new age, hippie dippy silliness that so permeates the culture here in bucolic Sonoma County and the Bay Area in general. Often times liberals who can cluelessly become so left, they’re right are just as, if not more insufferable than conservatives. The difference being of course that most of the goofy libs have no interest in authoritarianism, so they’re not even in the same ballpark as far as posing any actual danger, except for the anti-science, conspiracy theorists among their cohort. Those idiots smugly and obliviously endanger people every day by spreading their nonsense around!
“Identified patient, or “IP”, is a term used in a clinical setting to describe the person in a dysfunctional family who has been unconsciously, or sometimes consciously, selected to lay blame upon to draw attention away from the family’s true inner conflicts, true problem behaviors, and their perpetrators.”
Still Cranky After All These Years
Anyhow, so clearly I’m still cranky when appropriate, but back to acceptance. I used to experience quite a bit of anxiety which I came to understand was mostly because I’m very cerebral and because, as my wonderful therapist helped me understand I am the IP, or Identified Patient within my family. This is a psychological term meaning the individual within a family who it has been decided is the one who needs the most fixing, essentially.
Post cancer treatment and now healing up from my kidney transplant, I’ve noticed that a whole lot of that anxiety, not all, but most of it is simply gone. It used to be that for example whenever I’d go to, say a concert, even one I was really excited for, I’d have the weirdest sensation once it had gotten going that despite enjoying myself, I just couldn’t wait to get out of there and just go home! And I live for music! I used to work at two different records stores back in the nineties, I still have all my vinyl and CD’s and an enormous digital music collection and listening to music, especially in my car is just about the purest bliss I’ve ever felt, right up there with love, intimacy and body surfing!
So, this overarching sensation that while I was supposed to be enjoying a thing, I wanted it to be over. The inability to truly be in the moment. It was pretty much all related to deep feelings of self doubt. Not feeling cool enough to be there, or cool enough to play music myself, or be creative. These are actually things I still struggle with, but nowhere near as much as I used to and odd as it may seem, I really have cancer to thank for that. Nothing teaches you acceptance and how to appreciate what’s right in front of you like staring down your own mortality!
Look to the Chopstick
I’ll stop on this. An excerpt from one of the manic emails I wrote, this one to one of my dearest and oldest friends, Flint back when I was on steroids and truly out of my mind, yet also having what seemed like many epiphanies about life, myself and yes… acceptance.
Look to the Chopstick!
Chopstick Means Coffee
“So, epiphanies and momentum and excitement is what I’m full of now and it sucks to be sick, believe you me it does, but it’s so damn good to be alive!! So, I’m now more determined than ever to just relish everything that doesn’t suck every damn day somehow. ”
And if you think about it, there’s so much that doesn’t suck in your day to day that when looked at from a different perspective is just simply freakishly awesome. Like one of my little fetishes is around coffee, but it’s not about any particular method of brewing or storing coffee or this that or the other roast or bean or AeroPress or Chemex or whatever hipster, artisan, esoteric brewing method is the alpha and omega (we just have a decent Cuisinart drip maker and a couple of French Presses).
Rather, it’s really a very small ritual in that whenever I grind beans in the morning I use a chopstick to clean out the remnants of the grinder, cause metal on metal with a spoon?.. No! And I adore it. I love that chopstick and it sits in a Mason jar on the window sill right by the coffee maker...
I love that damn chopstick cause it means coffee and coffee means morning and a brand new day and my goal is to just keep trying to see and appreciate “the chopstick” in everything, y’know?
