Cancer Diary: Anatomy of an Emergency
I didn’t come to know the terrain of emergency through cancer. I came to know it through my children.
My daughter was born with spina bifida. Her VP shunt—a fragile lifeline—meant living with the knowledge that acute hydrocephalus could strike anytime, and quickly. At one ER visit, I found her given morphine for neck and head pain. Her shunt was failing. I shook her awake, reprimanded the doctor, taught a neurosurgical resident how to check the shunt, and arranged for her transfer to a research hospital that could actually manage her care. Instinct and persistence—not protocol—saved her that day.
Her care, intense as it was, became easy-peasy compared to my son, born three years later. He’s now 45, perhaps the oldest living person with CHARGE Syndrome. His first two years were a breath-by-breath battle—choking, clogging, CPR of varying lengths (the longest: twenty minutes), and daily resuscitation that blurred into routine. I stopped counting most things. But I do remember five comical deaths—times the line between life and laughter frayed thin.
So, by the time Carl was diagnosed with cancer four decades later, emergency wasn’t new terrain. It was familiar. And when my CHARGE son stopped breathing last week in a Fosters Freeze booth, my body already knew what to do.
No one else responded—not when I asked them twice to call 911, not when he turned rubbery and blue. I couldn’t pull him fully free, so I got him halfway out, face down on the bench, head hanging. I hit his back. Again. Again. Again. After minutes that bent time, breath returned.
The ER later said “dyspnea”—labored breathing, lingering hours beyond the moment. A marker that something real had happened. A thread tied to trauma, tension, and recovery.
But what lingered more than the diagnosis was the reminder: presence matters. Especially when systems stall. Especially when you're the only one trained by lived experience to act.
I’ve known this terrain for decades. Too many times to count, I’ve stood at the intersection of responsibility and uncertainty, nagged by a sense of inadequacy.
As his cancer progressed, Carl made more and more trips to the ER. Sometimes, it was an urgent issue but not immediate, and I took him. That is what he preferred (and, together with his other cancer needs and related preferences and often demands, it contributed to periodic caregiver burnout). Often, though, I could not lift his 300 pounds and needed 911 assistance. Every...single...time, in spite of my urgent requests, Carl would refuse to be taken in, even when the EMTs identified something life-threatening (like blood sugar below 30). Fortunately, in our little community, everyone knows everyone, and the fire chief, who oversees 911 activities here, had a commonsense approach. "Just take him," he told the EMTs every time.
In general, life prepared me for Carl's cancer, but not nearly enough. Like everyone else who ends up as a caregiver for someone with cancer, I faced many traumatic moments during Carl's last days when time stood still, panic tried to rule, experience set off automatic responses, and attempts at determining possible-best-better approaches sped through the mind like the numbers on a slot machine.
For other Cancer Diary posts, click HERE.
Blog editor's note: As a memorial to Carl Leaver, MSI Press graphic arts director and designer, who died of Cancer of Unknown Primary August 16, 2021, and simply because it is truly needed, MSI Press is now hosting a web page, Carl's Cancer Compendium, as a one-stop starting point for all things cancer, to make it easier for those with cancer to find answers to questions that can otherwise take hours to track down on the Internet and/or from professionals. The web page is in its infancy but expected to expand into robustness. To that end, it is expanded and updated weekly. As part of this effort, each week, on Monday, this blog carries an informative, cancer-related story -- and is open to guest posts: Cancer Diary.
To purchase copies of any MSI Press book at 25% discount,
use code FF25 at MSI Press webstore.
Want to buy any MSI Press book and not have to pay for it?
Ask your local library to purchase and shelve it.
VISIT OUR WEBSITE TO LEARN MORE ABOUT ALL OUR AUTHORS AND TITLES.
(recent releases, sales/discounts, awards, reviews, Amazon top 100 list, author advice, and more -- stay up to date)Check out recent issues.
Interested in publishing with MSI Press LLC?
Check out information on how to submit a proposal.
We help writers become award-winning published authors. One writer at a time. We are a family, not a factory. Do you have a future with us?Turned away by other publishers because you are a first-time author and/or do not have a strong platform yet? If you have a strong manuscript, San Juan Books, our hybrid publishing division, may be able to help.
Planning on self-publishing and don't know where to start? Our author au pair services will mentor you through the process.
Interested in receiving a free copy of this or any MSI Press LLC book in exchange for reviewing a current or forthcoming MSI Press LLC book? Contact editor@msipress.com.
Want an author-signed copy of this book? Purchase the book at 25% discount (use coupon code FF25) and concurrently send a written request to orders@msipress.com.Julia Aziz, signing her book, Lessons of Labor, at an event at Book People in Austin, Texas.
Want to communicate with one of our authors? You can! Find their contact information on our Authors' Pages.Steven Greenebaum, author of award-winning books, An Afternoon's Discussion and One Family: Indivisible, talking to a reader at Barnes & Noble in Gilroy, California.MSI Press is ranked among the top publishers in California.
Check out our rankings -- and more -- HERE.
Comments
Post a Comment