Lou Nims, a symbol of hope, of beating the odds, for glioblastoma multiforme (GBm) brain cancer patients for more than 13 years, died July 5, 2017 at age 57. I didn’t know Lou, though I met him briefly at the first Bellingham Brain Cancer Walk in 2014. For a disease that most often claims its […]
“I will be a miracle.”
In Kenya, Africa, in July 2009, Shearlean Duke had what later proved to be seizures caused by a glioblastoma brain tumor. This was her second year in Kenya as Western Washington University’s faculty escorting Western students to Africa to work with Kenyan high school girls orphaned by AIDS.
Seizures began when she […]
No One’s Prepared for Terminal Caregiving
I was my wife Shearlean Duke’s sole caregiver for the entire 18 months of her battle with glioblastoma brain cancer, and as difficult as that was it has been the highest achievement of my life. I wouldn’t trade the experience for anything; however it’s not something I would recommend to […]
I’d stumbled through 18 months of caregiving without resolving my questions about my rights, duties, authority and entitlements as caregiver to a terminally ill patient. I relied mainly on a sense of outrage, indignation, commitment and protectiveness to sustain me.
Throughout the process itself, I had no time or energy to invoke legislated, approved or negotiated […]
When I called my pharmacy to refill my blood pressure medication prescription a live person answered. I was so startled I blurted out, “Why are you answering the phone?”
I had autodialed the familiar voicemail phone number for prescription refills at the pharmacy I had patronized for the past eight years.
My beloved pharmacy (because it had […]
The American Cancer Society’s descriptions of caregiving tasks were, I recently found, little more than what one might do for someone with the flu. This discrepancy made me reexamine my own caregiving tasks when caring for my wife, who eventually died from terminal brain cancer.
For example, at cancer.org the Society provided two lists of […]
You don’t own your digital healthcare data and so you (the patient) cannot dictate who can receive it. Instead of negotiating with you about your digital healthcare data, the recipient you choose must negotiate for your data with the hospital that owns your data and its co-owner, the Information Technology (IT) company that provides the […]
For two months I had been searching for an audience for a presentation about my book, Waking Up Dying, without any luck.
I had written my book with three audiences in mind: healthcare providers (doctors and nurses), caregivers (friends, family and loved ones of patients) and patients (stricken men and women, mainly with terminal diagnoses).
Free review […]
Follow The Money
Most of what is being done in the name of healthcare reform and end-of-life preparation is determined by the availability of money to support the efforts. No funds, no effort. It doesn’t matter what the cause or need is. That’s life, most of us have learned. Follow the money.
It is discouraging though to […]
HEALTH INSURANCE DOESN’T TRAVEL WELL
Seriously ill people must take their health insurance with them when they travel. But not all health insurance is portable and so continuing care and treatment away from home can be difficult.
Patients may have a bucket list to fulfill or be seeking alternative treatment or want to visit loved ones. For […]