How I Became an E-Patient Through Cushing’s Disease

For all of my early life, I was the good, compliant, patient. I took whatever pills the doctor prescribed, did whatever tests h/she (most always a HE) wrote for. Believed that whatever he said was the absolute truth. He had been to med school. He knew what was wrong with me even though he didn’t live in my body 24/7 and experience what I did.

I know a lot of people are still like this. Their doctor is like a god to them. He can do no wrong – even if they don’t feel any better after treatment, even if they feel worse. “But the doctor said…”

Anyway, I digress.

All this changed for me in 1983.

At first I noticed I’d stopped having my periods and, of course, I thought I was pregnant. I went to my Gynecologist who had no explanation. Lots of women lose their periods for a variety of reasons so no one thought that this was really significant.

Then I got really tired, overly tired. I would take my son to a half hour Choir rehearsal and could not stay awake for the whole time. I would lie down in the back of the van, set an alarm and sleep for [...] continue the story

Guard That Goal

By Dan Hennessey

At age 49, happily married and the father of two girls, prostate cancer was the last thing on my mind. My work as a realtor kept me on the go day and night, and I stayed fit playing hockey and golf and running. But some things seem to catch up to you no matter your age or lifestyle. The new doctor in my life, Dr. Andrew Humphrey, noticed that I hadn’t had the dreaded annual rectal exam in a few years. This test saved my life, I believe, but also changed it forever. Dr. Humphrey was quick to refer me to a urologist, Dr. Greg Bailly, who sent me for a biopsy.

All this occurred early in December 2005. But with Christmas approaching, the results would have to wait until January 2006. This holiday was one to remember, with thoughts of what the future might bring always on my mind.

The day I received the call from Dr. Bailly telling me that I had prostate cancer, my wife was away on business and I was at home with our one-year-old. Thoughts spun around in my head: Wasn’t this something that older men got? How fast can we get this thing [...] continue the story

Marcy

I am 52 years old, and I have had NF-1 since birth, the result of a spontaneous mutation. My parents are deceased, and I have two older sisters, both unaffected. I have cutaneous and plexiform tumors. NF mostly affects the left side of my body, including vision, hearing, and some motor function.

I was diagnosed at 2 yrs of age by our family doctor, and have had almost as many surgeries as birthdays.

I have a Masters degree in Counseling, am a Certified Professional Coder, and just finishing up an Associate’s Degree in Health Information Technology, the result of a midlife career change. I currently work as a caregiver while I complete my degree.

I was married once; I’m now divorced and single and happy. My personal mantra is: I am a woman with NF, but my NF does NOT define me or defeat me.

Olivia Newton-John

Olivia Newton-John, Diagnosed at age 44 Treatment: Surgery, Chemotherapy, Radical Mastectomy, Reconstruction

Breast cancer does not discriminate—just ask mother, actress and singer Olivia Newton-John. Here, she shares her story of facing fear and winning.

Q: Did you ever think about breast cancer before your own diagnosis in 1992?

A: A dear friend of mine was diagnosed only three months before I was, and our little circle immediately said, “Oh my God! She’s got cancer!” There’s something about the word itself that’s so scary. So when I got it, I had to come to the realization—and it took awhile—that cancer isn’t necessarily a death sentence. Millions of women go through it and then lead productive, healthy lives. But at the time it felt overwhelming.

Q: So, you and your friend were facing it together.

A: Yes. She’d had surgery and was already going through chemo when I was diagnosed. Then, a few years later, a third girlfriend got it—three women from my immediate group—all in their 40s. A housewife, a flight attendant and me. Unbelievable.

Q: Did you friend’s diagnosis motivate you to conduct self-exams?

A: I’ve always had regular exams, because I’ve had a few [benign] lumps before—you know, cysts—so I went periodically to my surgeon for check-ups. [...] continue the story

The Orange Light or Room-mates

By Andrea Shewchuk

Almost 11 p.m.

We looked out of the 14th floor wall of windows at the orange CN Tower. The CN Tower was lit different colours to mark seasons or occasions. It was that time of an evening or that time anytime when something happens and all truth can be spoken and it’s safe. You just “know” that “time”. We had just come back from a walk around “the lap”. “The lap” was the obstacle course of gown and other disposal units, nurses’ trolleys and other walkers rather than safe passage for people with disconnected abdominal muscles and the impediment of an over-sized, shapeless, hopeless gown with malfunctioning closures to be managed concurrently with an IV in tow.

My room-mate was J. She had a gaping wound that ran several inches vertically from her chest down her abdomen. The doctors had left it open to “heal” after having worked on it in the afternoon. I wondered where I was. I thought of the movie Beautiful Dreamers.

J. had recovered from surgery to remove part of her colon because it was so damaged from one of the many possible syndromes, conditions and dis-eases that we have names for. And then a year later, she wasn’t feeling well and it was discovered that the [...] continue the story