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My drug of choice is writing––writing, art, reading, inspiration, books, creativity, process, craft, blogging, grammar, linguistics, and did I mention writing?

Monday, January 10, 2022

Cancer Update (Meta/Personal)

I had originally intended this for Thursday's post, but recovery is a non-linear process and some days sap my energy more than others. I'm definitely getting better, but (especially last week) I would do one thing and be kind of wiped out.

So in lieu of writing ABOUT WRITING, today I'm just going to tell you about my cancer journey up to this point. But I do have an insight towards the end for those who are hoping to make writing pay the bills and who want nothing more than to "make it" by some value of that that might include losing the day job. Maybe not a didactic insight. Certainly not for everybody. Might make a few of you flip some tables. Still…something I noticed nonetheless.

If you're just tuning in, a routine blood test found anemia, and the further they went, looking for the cause, the more obvious it became that something was very wrong. A colonoscopy turned up a mass and pathology said, "cancer." Colon cancer.

The next step was surgery. 

Okay the NEXT step was to set up a group on Facebook for butt-themed memes called Chris's Butt Stuff, but, you know….THEN surgery. 

It's difficult to describe just how unpleasant the ramp up to something like this is. Imagine having to rewatch Lost for the third time but you only have a bootleg recording where the audio cuts in and out, and the picture is grainy—except somehow the smoke monster makes even less sense and the time travel plot is even MORE convoluted. Every week was two or three major appointments, and tests just kept getting added. I got poked and prodded and had to fast beforehand, and drink this awful stuff that is a powerful laxative. It was invasive and violating and even though I knew I needed it, it was one of the worst stresses I'd ever been through. 

December 16th, they cut out a softball-sized mass along with a little over a third of my colon*. There were no complications that would have caused the surgery to be abdominal (rather than laparoscopic). Other than being bigger than anyone expected—it was hidden in a corner and even fooled a CT scan—it was a textbook procedure. The tumor had perforated the colon wall but there was no lymph node involvement. I don't know much about classifying the stage of cancer, but this is technically 2B according to the oncologist.

(*Now I have a semi-colon. ~rimshot~)

[Ed. Note: "No, Chris. You have a 2/3 colon.]

I mean…..I GUESS!

Right now I'm waiting for a genetic test to find out if I have something called Lynch syndrome. I have two markers for it (and the tumor kind of behaved like I have it as well—a local super-asshole tumor but without much spread), but a genetic test is required to confirm. If I've got it, there is no benefit to be gained from chemotherapy, and recent studies show it would actually make for poorer outcomes. If I don't have Lynch syndrome, a type of chemotherapy called 5FU is up next. 5FU is kind of well tolerated as far as chemo goes (I might not lose my hair), but it's still pretty rough. Going on the easiest chemo is kind of like facing off against the LOWEST ranked heavyweight boxer in the tristate area. You're still going to get your ass kicked.

Beyond that there's the original anemia and low platelets. My CT found some scarring on my liver, which is weird since I can count the number of drinks I've had ever without taking off both socks, and I've never had hepatitis. And we have to figure out if surgery solved all the original problems of anemia. It's possible that even if that was the underlying cause of everything, I might need another iron infusion to bring my numbers up to where they belong.

So there's a lot more to come. 

But the main thing is the genetic test. That's going to determine what's next. 


Moving on to the not-for-everyone-so-don't-flip-your-perfectly-good-table point.

ONE interesting thing that I kept hearing from people as it became clear that I was going to have to take some kind of break from blogging is that there were more important things than writing. 

Yes.

YES!

Yes.

But….also….

Obviously, there are more important things than writing (I swear), but for me, writing is way way way up there. I wrote the day of my surgery. I wrote the day after. I've written every single day of my recovery. (It hasn't been blogging under deadline, and it would be maybe an hour instead of five or six, but I wrote every day.) I can't imagine a life without writing. Sometimes things that are urgent crop up and I have to give priority to them over writing, but urgency and importance are different. A pot boiling over is urgent, but cooking your world-famous bolognese might not be more important than the argument you're having with your partner about your future together. You get the pot off the burner because you don't want the house to burn down (URGENT), but then, hopefully, you make a choice to let the meal go and focus on the more IMPORTANT conversation. 

And if you turn back to your bolognese and tell your partner to just calm down for a damn minute while you finish cooking the entire meal, you're making a decision.

And I'm struck again by how often I run into people who burn to "BE" writers, but do not make writing a priority in their lives. You don't necessarily have to give up a well-paying career or a social life or having kids or all your personal time, but you probably have to give up SOMETHING if your goal goes beyond being a contented hobbyist. You maybe don't have to reach for the computer the day after major surgery like some (AHEM), but if you take a couple of months off, waiting until you are absolutely fully recovered before you sit down to type a word, there's some information there about how much writing means to you and how much you want it in your life.

There are more important things than writing. Overall health is more important, and if the doctor walked in and said, "Chris, I'm sorry. If you write, the creative power of magical rainbows will melt your sutures, you will go septic,…and DIE," I certainly would have taken a break. And there are definitely things (like doctors appointments) that will be more urgent on a day-to-day timeline. 

However, it is also true that we create lives that reflect our priorities one decision at a time. And if there are too many more things in a life that are constantly more important than writing, our lives will not fail to reflect that. There will always be something. It'll be an endless cavalcade of "I have to do this one more thing, and then I'll get back to writing." This isn't a value judgement (you should probably prioritize a family if you don't want to be a shitty partner/parent, and surviving capitalism is pretty important), but it is simply a fact. I am no different than anyone else—if I prioritized writing my novel over other parts of my life, it would be done by now. I am constantly waiting for one more thing to get better, and I have placed priority on other things. I wanted a social life. I wanted a love life. My novel remains unfinished. My life reflects my priorities. 

When an urgent issue clears, a high priority will float back to the top almost immediately. A lower priority will remain low—perhaps only to be given attention when EVERYTHING else somehow requires no attention at all. And how often does that really happen?

If it doesn't float to the top, there were other priorities there. 

So I can't tell you where you land, and there's no right answer when it comes to your own relationship with creativity and expression, but FOR ME, it is perhaps more accurate to say that there are more URGENT things than writing, right NOW. But the importance of writing never faded, and as soon as the urgency wanes, the importance of writing will reassert itself in my priorities. 

A lot of people ask me how they can make it. (Actually, that's the most common question working writers get—how their success can be emulated.) And a lot of people asking the question are looking for something more complicated (yet easier to do) than, "Write every day." But perhaps "Write every day" is just the praxis for a broader idea that is better expressed by, "Make writing one of your very highest priorities or your life will reflect that it isn't."

11 comments:

  1. I wish you well. Its in my family too. Give yourself the time to heal. I wrote about three hundred words and then erased them. Does that count? Smile when you can. Drink lots of water. Namaste

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  2. Hi Chris, My best wishes to you on your recovery, Meanwhile, as far as the surprising discovery of scars on your liver, you might want to look into the growing national health problem called "non-alcoholic fatty liver disease." It's been linked to many of the chemical-laden pitfalls of the modern American diet, especially the myriad forms of sugar we consume, and then there's very-recently-discovered dangers of modern cooking oils (dubiously called "vegetable oils") derived from seeds.

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  3. I can't explain in a way that would make sense how much of a difference writing about writing has done for me. I'd show you with my wallet, but I can't. I'd show you in some other way but I don't know how. I'm poor and I'm fearful, so this is all I can do right now. Which is inadequate and a bit insincere, I guess. Like a homemade birthday card someone didn't put effort into. A gift with no energy invested and no bravery required. Paper glued to cardboard with crayon smeared all over it. I am putting effort into this, you know. I am. But I don't think anyone can tell because I'm not a writer. It does take something out of me, daring to write this. I guess it'll end up adding something to me too once I'm done. Most things you dare to do does.

    But I'm not a writer. I don't write every day. I can't, because life keeps kicking the shit out of me. I try to kick back of course, but you know how it is. I mostly end up the same way anyone does who trash and flail at a bully that absolutely will hold you down and fart in your face. I grimace, accept defeat, then try to keep my dignity while feeling nauseous. Feeling defeated.

    I do not have cancer.
    We don't have that in common.

    The things that kick the shit out of me are a lot less lethal. But selfishly, I wanted to say all of this anyway. I wanted to say that writing about writing makes a difference. You make a difference. I read your blog, the free stuff, and I inform myself. I create space in my head where what you tell the world is stored, and I file it under "Chris said this" and "don't fucking forget". And I don't. Forget I mean. I'm over 40, I've wanted to write all my life. They ask you when you're a kid what you want to be when you grow up and you say "ninja astronaut" and they say "don't be stupid." So you think long and hard and end up with "writer". And they say "be realistic". And I was, for the morepart of my life. I was realistic. Did what was required. I conformed. Folded. GMd RPGs and buried myself in gaming outside of work. Books, movies. Anything that's a story caught me, embedded me.

    A friend of mine follows your Facebook stuff. So I saw posts from you there, and you told me as a reader to dare. To dare to do it. To dare to do it and shut my ears to anyone who tells me differently. Not in those words of course, those are mine. But basically tell the doubters to yeet off of a cliff and begone. And I did. And it freed me. I write all the time now. I don't know if it'll end up as a career or not. I don't care. It doesn't matter.

    Just know you make a difference. When you find that one thing you want to do all the time and you're prepared to sacrifice most everything else to do it, then you know you're home. I was lost at sea and I'm not anymore. That's your doing Chris. Thank you.

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  4. Wonderful post, thank you. Wishing you as smooth a journey through the health stuff. I've been there, and it ain't no picnic. (Not to mention all the free, unsolicited "medical" advice from armchair practitioners who think their Google searches amount to a dozen plus years of thorough education. Heh heh. My (least) favourite bit of advice was to take "curcumin" in lieu of surgery, chemo, and radiation. Thank heck I didn't listen. Still alive and kicking!)

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  5. Wow. Thank you so homing in so accurately on a thought process that all writers probably have but never fully understand. I really needed to hear this today, Chris! Thank you, you really make such a difference by writing. Thank you for giving us you and your thoughts and words during what is undoubtedly a difficult time. I'm sure I'm not the only person who's been consoled and uplifted by your wry humor.

    Thank you!

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  6. I'm not a writer; just someone who loves reading. Keep up the fight Chris, and keep writing! x

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  7. I do that with editing. Can't write with fourteen hours of physio a day, but somehow I can still manage to systematically tear apart a plotline. If you need me, I'm yours. Xzigalia.

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  8. Keep fighting Chris! This is a great post. (But can I flip a table anyway?)

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  9. Somewhere along the way, your group popped up and looked interesting to join. I'm trying to remember when, but it must have been some time after I picked up my writing again after hit and miss blog writing on Facebook. I had started the page after my Mom's death and before she had passed away in Hospice, a 13 agonizing days of watching her slowly slip away, I had an awful amount of time on my hands and talking with a couple of writer friends, they said to pour my words out through the grief. I did fairly well for awhile in 2019, but then I also lost a dear friend and my brother, had to move from toxic mold in a condo building and was worn out and hurting in my neck area more than usual. Like you, but different, I have struggled with mysterious health issues that were only found after testing and scans and sometimes screaming at Dr's "you are missing something, I don't feel well". Turns out driving a transit bus is hazardous to the body. But so is personal injuries like falls, car accidents as a child in vehicles before seashells were mandatory. And accidents as a bus driver, buses are like egg cartons and don't hold up very well except rear ending accidents. Anyway, long story short, I now have a laundry list of ailments and conditions that on a day to day basis can upend my days completely. So I definitely understand you and your situation. I have survived 8 surgical procedures (one of them being emergency open heart surgery) and live with degenerative disc and spinal disease. Being a preemie has been stacked against me since my 1st breath and I've been fighting for normalcy my whole life. After many years of gainful employment, a personal injury took me out of my driving job after 2 surgical procedures on my right ankle resulted in a decision by the surgeon saying if I continue to work, I may not be able to walk if a 3rd surgical procedure were to be done. Which left me time to care for my Mom and the dear friend. Then the mold almost took me out. Then finally think after losing my brother late 2019, and moving into a brand new house that life would settle down. Welcome to a worldwide pandemic! 2020 was whittled away staying home. 2021, wasn't much better and despite vaccinated, both hubby and I got Covid that lasted 2 months. At home but we were thinking this is it, we're just going to slowly die. If we didn't push for prednisone I don't know if I'd be here to write this book to you and your situation. Cancer sucks. I pray that I never face that situation. I hope you find out that you don’t have the condition they're checking out. One never knows how fast life can change. In September of last year while trying to wait out the damn virus, is when I picked up writing again and haven't stopped. I've had hiccups in the sense of having to go to a nephew's funeral, the not so fun part of the holidays. Every year, crap happens to suck the joy right out of me. 2021 was no exception. Loved loved your photo shoot of the tumor and subsequent "birth". That was a nice way to put a spin on a sucky situation. You definitely write from the heart, as I do and are a great help to the novice writers like me as well as seasoned writers like yourself. I have much to learn to get from my personal story to a well thought out and readable book for others to want to read. Anyway, glad to connect finally now that I am back to staying home for safely reasons and having time on my hands to read your journey and cheer for you on the sidelines so to speak. I look forward to reading more about the writing process as I embark on this novel writing vs blog writing. Thanks for all your help!

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