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One Year Later: Brave New World

The two great cliches of action shows, "This isn't over!" and "This ends now!" are flipsides of each other. (My Facebook post from December 2, 2015)

One year ago today, I walked to the University of Washington on my regular work commute. But instead of going directly to my office, I first went to the UW Medical Center Radiology Department to get an MRI of my head. We were trying to figure out why I had had a series of seizures starting the previous August. After the MRI I walked to my office, picking up a cup of coffee at Bean and Bagel along the way. As I sipped the coffee at my desk, I could feel a seizure coming on. Because my working theory for so long had been that the first seizure was caused by stress and anxiety, I wondered if this one had been triggered by the coffee. I tried to warn my officemates, Doug and Bill, about what was happening to me, but by then I had already lost the ability to speak. They soon figured out that something was wrong and called our boss, who called 911. The EMTs who checked me out suggested I go to my clinic and see a doctor about the seizure. So my boss drove me to the UW Medicine clinic at Northgate. My regular doctor wasn't available, although he spotted me in the lobby and came over to ask how I was doing. I suspect he had seen the MRI results by then, but I don't know for sure. In any event, there was another doctor who could see me. It was a longish wait before I was let into an examination room, probably because she was reviewing the MRI and discussing it with more senior physicians and preparing herself for what she had to tell me. As soon Dr Sairenji came in, I could see by her face that it was bad news.

She informed me that the MRI showed that I had a tumor in my brain, and the radiologist who read the MRI was calling the tumor glioblastoma -- which later really pissed off my neurosurgeon, because he felt only pathologists can determine the type of cancer, looking at cells from the tumor itself. In retrospect my guess is that an experienced radiologist can probably recognize glioblastoma from the MRI, even if they can't tell the exact type and grade, which is in fact incredibly important information, because Grade I and II are generally not terminal, whereas III and IV (my grade) are. Dr. Sairenji answered my questions and to reassure me as best she could. I'll never forget the sorrow on her face. She had never met me before, but she was the one who had to tell me I had potentially lethal cancer. When I started crying she gave me a light hug with one arm around my shoulders. The news actually wasn't a complete shock, because as soon as I'd had my second and third seizures, three months after the first, I began to wonder whether I might have a tumor. Still, I had tried to set that thought aside and to hope for better news. So in fact -- to heck with the nuance -- the news shocked me to the marrow.

I had called or texted Denys asking if he could come pick me up and take me home, because I knew I wouldn't be going back to work. As soon as I saw his concerned face and started telling him the news, I started sobbing, as he cursed furiously while welcoming me into a big, comforting hug. It was even worse when I got home and called my mom. I doubt it's difficult to imagine how little she wanted to hear my news. All I could think to say was, "I'm sorry. I'm sorry." Undoubtedly the hardest, most heart-wrenching conversation I've ever had in my life.

A lot has happened in the year since that day: surgery to remove the tumor, diagnosis of the tumor (confirming that it was glioblastoma, and of the worst kind), a course of simultaneous radiation and chemo, and then a longer (and ongoing) course of chemo and a new electromagnetic treatment technology called the Optune. It's been a long, hard road, but my family and friends swiftly closed ranks around me and have carried me on their backs through all the turmoil and trouble. My mom, sister, brother, sister-in-law, and Denys have all been particular champions, and I cannot possibly thank them enough for all they've done for me, from feeding me, accompanying me to doctor appointments, advising me when I was confused about the options facing me, and helping to pay off our remaining mortgage, to taking on most of the household chores and changing my Optune transducer arrays twice a week. Many, many other friends have corresponded, created single-issue, single-copy fanzines for me, come to visit, cheered me in Facebook and LiveJournal comments, walked with me to keep my strength up, shared their cancer treatment stories, sent me care packages and gifts of food, books, and music. It's been a crappy year of debilitating treatments, but I've learned a lot about love and friendship in the process, such as the fact that it can be completely invisible to you (or at least to me, Captain Oblivious) until you need it in the worst way. I haven't worked a single day since that first MRI, and I'm in the process of taking a medical retirement. I've made new friends who stepped in without hesitation to give me support. I have added many more Facebook Friends, many of whom I don't know personally, who follow me now because they know my Mom or my sister and want to follow my story, because it's part of their story. Old friends who I'd lost contact with are coming out of the woodwork as the news slowly filters into the world. People have been amazing.

It isn't all friends and family either. I've met with, talked to, and been treated by a phalanx of doctors, neurosurgeons, radiation oncologists, neuro-oncologists, nurse practitioners, registered nurses, receptionists, radiation techs, MRI techs, phlebotomists, clinical psychiatrists, nutritionists, Optune reps, pharmacists, long term disability insurance reps, Social Security Disability Insurance bureaucrats, University of Washington HR bureaucrats, and social workers. It takes a village to treat a cancer patient. Not all of them have been equally competent or caring, but in general I've found the people at the Alvord Brain Tumor Center and at the UW Medical Center as a whole to be very kind and helpful. Good people who are committed to quality of life for the terminally ill. Considering all the bureaucracy involved, it's kind of amazing how good the treatment has been.

A lot has happened in the last year and I'm hopeful that there's more amazement to come, but I thought it was worth marking that a year ago I walked through a door into an examination room and exited a stranger in a strange land that had such people in it.

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Comments

( 12 comments — Leave a comment )
kdotdammit
Dec. 2nd, 2016 05:13 pm (UTC)
Sending all my love and magic healing and life Randy.
randy_byers
Dec. 2nd, 2016 05:19 pm (UTC)
Thank you, Ms Dammit, and for all your support in the past year.
(Anonymous)
Dec. 2nd, 2016 06:09 pm (UTC)
Here's to more and more and more. And your continued good writing about your experience.
LaVelle
gerisullivan
Dec. 2nd, 2016 06:25 pm (UTC)
Thank you, as always. The anniversary has been bouncing around in my brain these past 48 hours or so, especially the last 24. Not that I remembered the exact day; the memories were triggered by the fact that it's Smofcon weekend. Last year, I didn't go to Smofcon. Instead (and it was a few days later), I headed down to Virginia to drop off the tapes from the Scott Imes Video Archive so Guy Spiller could digitize them. Then I headed to the Kill Devil Hills, NC to spend a few days on the Outer Banks while you made your way through surgery.

This year, these 12 months later, I'm at Toad Woods, resisting the urge to drive to Chicago (where Smofcon is) or back to the Outer Banks.

This year, these 12 months later, you're still a brilliant writer. Debilitating as the treatments have been, they haven't taken that away.

Here's to more amazement. Here's to more love.
randy_byers
Dec. 2nd, 2016 06:42 pm (UTC)
When I was looking back through my Timeline, I found the beautiful photo you posted of a sunrise at the Outer Banks.
(Anonymous)
Dec. 2nd, 2016 08:56 pm (UTC)
Anniversary
There is so much about you I admire and like. You are right, strength not only comes from within but from your support system which I am glad to say that you have a strong vibrant and caring support system. I agree that the support comes from the medical team as well, 10 years ago I would visualize the beginning of a marathon race and put all the runners in white outfits to symbolize all the medical personnel who were working to heal and help me. Take care. Hugs
scarlettina
Dec. 4th, 2016 04:01 pm (UTC)
I think of you often. I really do enjoy reading your LJ. I'm so glad that you've gotten such excellent care and that in some ways, wonderful good has come out of your awful diagnosis. I wish we knew each other better. Please know that you're in my thoughts and you have my wishes for only good things.
randy_byers
Dec. 4th, 2016 05:11 pm (UTC)
Thanks, J. I appreciate it.
bibliofile
Dec. 10th, 2016 07:59 am (UTC)
Geez, it's been only a year?! That seems both so long and so short a time ago for your ordeal.

I've been glad to hear that you've had so much support, and to read your LJ posts (FB is so fickle) in the meantime. Glad that you're still around, alive and kicking. Sorry I haven't been able to add to the support, but fortunately you're not letting that stop you!

Oh, and I recently had a dream where I was in a west coast city, and there was a party for you at someone's apartment. You were wearing an offwhite, soft cowboy-ish hat with a beer logo on the front. But apparently my brain could only come up with the logo and lettering for Miller Lite, which I must admit is not very Randy-like. So, um, hello from my brain to yours? (Brains are weird.)
randy_byers
Dec. 10th, 2016 03:08 pm (UTC)
If I was wearing a Miller Lite hat, clearly the dream cancer had eaten my dream brain! I mean, even if I'm going to drink shitty beer, I prefer Budweiser to Miller.
(Anonymous)
Dec. 10th, 2016 05:30 pm (UTC)
beer hats
I know, right?! Apparently I couldn't even remember a New Glarus Spotted Cow thing, or y'know the brew pub where I play trivia on Wednesdays. Though in the dream it was supposed to be good beer; the identification happened when I woke up.
bibliofile
Dec. 10th, 2016 05:31 pm (UTC)
Re: beer hats
whoops! that was me
( 12 comments — Leave a comment )

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