Chordoma, Diet, Optimism and Star Trek

Star Trek’s premiere in 1966 coincided with my high school years and I, Sally G, have been a fan of Roddenberry’s vision ever since. As a freshman in New York City, two friends and I laboured for months writing a script for the original Star Trek. “Trek Sisters” 1969.

Our script was accepted by Gene Rodenberry (we have his signed receipt!)… just before the whole series was cancelled. Our dreams were shattered but the fan adoration lived on!

I moved to Toronto in 1974 after finishing graduate school and, through my entire career, I found that Star Trek brought people together who perhaps would not normally socialize.

Common ideals and philosophical perspectives crossed over perceived racial, ethnic, gender, religious, age and other social boundaries. I found fellow Trekkies everywhere: in my work and in a tech-focused discussion group I led for nearly a decade on weekend mornings at the McLuhan Coach House in Toronto.

Back in New York, not far from where I had lived in the 1960s in Manhattan, another youngster, named John R. Adler was also inspired by the show. John would be starting his extraordinary medical career at Harvard just a few years after Star Trek was syndicated. In 1987, John [...] continue the story

Is Seeing the Doctor 400 Times Too Much?

This is a cautionary story of how it can be expensive in time as well as money to know too little about your own health and treatments.

The 400 visits in the title is what it is because for seven years I went to the doctor’s office for weekly injections of methotrexate. Year after year I dealt with snow, rain, ice storms, paying for parking, dealing with the difficult receptionist and wasting time waiting. The only positive side is that I now know my doctor very well.

After that endurance contest I can say that for me the biggest advantage to being involved in a clinical trial was a conversation with a trials nurse who said “Why aren’t you doing the injecting yourself?” A classic “Had I But Known” was my answer. If I had had the faintest hint that I could have been doing it on my own I would have. This author was one of the queens of the HIBK (Had I But Known) genre That marked the last time I had someone else take care of my injections. Now with social media, people who are connected to other patients can find that answer much faster than I did.

Thinking of how many [...] continue the story

Women with Fibroids Movement: Part Six—“Sheros” Wanted!

Women across the country are banding together to advocate for timely and appropriate care and treatment. The uterine fibroid patient advocacy movement is creating an organized and unified patient voice, the first step towards being taken seriously by the medical community—as opposed, Patricia says, “to being seen as a lot of screaming women, which is kind of what we’re taken for now.”

More women like Mercy, who had the courage to find her own solution, are connecting to each other, learning from their empowering and motivating experience:

Even when a woman is armed with knowledge about abnormal uterine bleeding treatment options, and knows   how to interact confidently with her doctor, the Canadian healthcare system itself may still throw up barriers to her best treatment outcomes.

So what are women living with these conditions to do? 5 Ways Any Woman Can Be A Shero Being a Shero isn’t complicated. Here are five easy, everyday steps anyone can take to be a Shero:

1. Talk, talk, talk—be a talking Shero. Tell your story to your friends, your family, your boss, your co-workers, your bowling club, your yoga class-anyone you haven’t shared with. You might be surprised by how they respond and by how many women may be [...] continue the story

Women with Fibroids Movement: Part Five—Face to Face with Your Physicians

Information is powerful. When you’re ill, it’s your right to be given the information you need to make the best decisions for you and your body.

A question is a powerful thing, because it yields information. Ask as many questions as it takes to understand your condition and your treatment options. Ask questions like your life depends on it—as we’ve learned from the stories told by the women leading the uterine fibroid patient advocacy movement, it kind of does.

It’s important to ask smart questions. We’ve made it easy for you. Here are the top questions to ask…

When you get any kind of diagnosis:

What is my diagnosis? Please explain it thoroughly to me in plain language. What are the treatments/medications? What are they composed of and why? Are there any risks associated with the treatment? Are there any alternative treatments? Where can I get more information? What are the planned procedures?

When you’re told you need a hysterectomy:

What are the treatment guidelines in our country, and more to the point, how can those guidelines be applied to me? When are hysterectomies indicated under these guidelines? Do I have any of those conditions? What are the treatment options offered at my hospital besides hysterectomy? How can I find a doctor who [...] continue the story

Women with Fibroids Movement: Part Four—Information is Power

Practitioner-patient interactions can represent a potential barrier to timely and appropriate diagnosis and treatment, as we learned in a previous post in this series. In the prolonged and confusing healthcare journeys that some of the 15 women at the forefront of the uterine fibroids patient movement have gone through, practitioners have sometimes diminished their suffering and denied them information: “After a million trips to my GP, he told me to just try putting up with it.”

“I asked him about my test results. He said, ‘You wouldn’t understand.’”

So how do you advocate for yourself and speak confidently with your physicians? With information! So here’s some information you need.

You have other options besides “the H word.”

Uterine fibroids account for more hysterectomies in Canada than any other condition. As patient advocate Holly Bridges explains, “Doctors haven’t been taught to do anything but hysterectomy” to treat fibroids. That’s unfortunate, because multiple, minimally invasive treatment alternatives now exist for conditions that cause excessive bleeding. Here’s just a sampling of treatments experienced by only five of these women:

Surgical Treatments:

ablation focused ultrasound embolization myomectomy dilation and curettage (D&C)

Before you decide on any course of treatment, you should ask yourself these 5 questions:

Do I want to have children? Do I want to prevent pregnancy? How [...] continue the story

How to Be?

By Kristen Knott

Written February 2, 2014

Now a month into 2014 and the hair on my head is slowly coming back, my eyebrows are reappearing, and I can even see some eyelashes growing. It will probably be another month until I can ditch the wig, hat and scarves. My energy is quite good during the day, in fact at times I feel like the old me, the me before cancer. Yet the evening comes and I am smothered in fatigue again.

I look around my house and I see the differences, they are likely subtle to others, but to me they are profound. The one room that has completely been ignored is my office, as it hadn’t been addressed since the spring. Mail has piled up and needs filing, calendars still read May 2013 and the Juravinski patient handouts were frontline and center on my desk. The room looks like time stopped when I was diagnosed June 6th. I slowly organize the clutter and discard the one-inch thick “welcome to chemotherapy booklet “ that lists all the side effect information that I needed during my August to December therapy. It feels odd throwing it out, yet a part of me feels like [...] continue the story

Eric Dishman: Health care should be a team sport

When Eric Dishman was in college, doctors told him he had 2 to 3 years to live. That was a long time ago. Now, Dishman puts his experience and his expertise as a medical tech specialist together to suggest a bold idea for reinventing health care — by putting the patient at the center of a treatment team. (Filmed at TED@Intel) Eric Dishman does health care research for Intel — studying how new technology can solve big problems in the system for the sick, the aging and, well, all of us.

Jill Haas Says Medicinal Marijuana Will Help Her Daughter’s Seizures

Published on Jan 10, 2014 Testifying before the Kentucky House Health and Welfare Committee on January 9, Jill Haas told legislators her four-year-old daughter started having seizures shortly after she was born. Haas said she’s exhausted all medical options and feels medicinal marijuana would help her child live a higher quality life.

Medicinal Marijuana a Last Hope for Sick Kids

Published on Jan 10, 2014

Testifying before the Kentucky House Health and Welfare Committee on January 9, Josh Stanley, a cannabis cultivator and founder of the Realm of Caring Dispensary in Colorado, told the story of a five year-old-child named Charlotte. The girl suffered from up to 400 seizures a week caused by an intractable form epilepsy. Doctors tried 18 different drugs to control her seizures but relief only came when Charlotte’s parents turned to medicinal marijuana.

Women with Fibroids Movement: Part Three—Living With Fibroids “Affects Everything You Do”

“I think we can agree on one thing: that we all woke up one morning and whatever the focus of that day was, that changed. What is up with this bleeding? What the heck is up with the clotting?” – Patricia

Seven years ago, I had the first real health crisis of my adult life. After several months of denying obvious signs that all was not well with my digestive system, the day came when I couldn’t eat anything without pain. I remember one episode of pain so crippling that I lay crying on my bedroom floor in the fetal position, unable to even drag myself to the emergency department just metres from my home.

Over the next several months, I saw lots of doctors, none of whom could tell me what was wrong with me, and some of whom implied that there was nothing wrong with me. I spent a lot of money on different therapies. I was prodded and poked, and had tubes forced down one end and up the other.

Desperate for relief, I put myself on a very restricted diet. I retreated from social life—believe me, you’ll never understand how much our social lives revolve around food and drink [...] continue the story