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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Wednesday, April 30, 2008



Now it is no secret that I am going through something – borderline ovarian cancer. I consider myself very lucky. If I had waited and not followed-up with some symptoms last fall, I may have ended up in some Stage 3 or 4 situation, and my chances of living would be poor. Like all parents, my fear is that Adam would not have his mother and that I would miss all of the magnificent milestones he continues to have.

Here’s an excerpt from Michael Bernard Loggins, a man with developmental disabilities who wrote Fears of Your Life:

Fear #33:

“Fear of you never known you were gonna lost your mother is very sad and scary experience you have to face and learn from and you wonder why she has to die I love her – and I had loved her once while she were alive. Especially if she was the mother that raised you and the others through birth and you only wish that you could have done all you can to help save her life. It gonna be worse times and hard times for Michael Bernard Loggins and his sisters and brothers too. Especially when mother’s day comes.”

But my chances seem very good. Except for the unknown – what my next surgery may reveal, I have excellent chances of being totally cured for good. In fact, my first serous tumour was already taken out, and because of the high risk, I must have everything taken out. It’s no secret. Millions of people go through it every day, and they go on living. I know I am supposed to be emotional and mourn some kind of loss, and it may be premature for me to express any of it now, but I’ve had my wonderful child, I have four stepchildren who support him and who I have come to love deeply. While I can’t speak for how I will feel after my surgery, I can say that the most important priority I have is living for Adam and my family.

This post is about listening to your intuition. My intuition is something that I tend to listen to quite closely, and what kept me away from “experts” who really could have done more harm than good for Adam. I intuit people quite well – even though I may want to deny what I feel and “be nice” to people. That’s the way I was brought up -- to be nice. Sometimes I intuit things that frighten me because it sometimes means facing something difficult. I have even taught myself to ignore my intuition at times where people are concerned, only to have learned my lesson.

It’s the same now with ovarian cancer. “Listen to the whispers” is what ovarian campaigns tell women. What a wise line! The symptoms of ovarian cancer are so subtle that women usually do not discover them until they become severe. But I had some. They were small and quiet and they could have been anything. I began with ultrasounds – “it’s nothing,” said the doctors. “Pull out any woman your age from the street and they all have some kind of cyst.” But I wasn’t sure and I didn't feel they were right about me, yet I had doubts -- was I being paranoid? Yet, right from the time I had the first symptom and ultrasound, I had a feeling. I got to see my CT Scan. “You have double spine,” they said. “Look at that!” they were fascinated, pointing to the image, showing me. “Only one per cent of the population have a double spine!”

“But what about my cyst?” I implored, as it appeared dark and with some kind of mass beside it.

“Don’t get hysterical” said a secretary sitting in for the regular one at my geneoncologist’s office. I wasn’t getting hysterical. I was asking prudent questions. Why my CA125 kept going up; why I was getting uncertain results from my CT Scan. “You’ll be fine,” she said with a doctor’s assurance. She is not a doctor.

When I first visited the gyneoncologist in January, after the initial tests and after my wonderful GP seemed to "feel" something too, the doctor took a look at my healthy face and asked me questions. I have a lot of cancer in my family. But she said she wasn’t concerned. She did another CA125 and scheduled my MRI. “It’s probably just an endometrioma,” she said assuredly. CA125’s are unreliable in women my age. The test can rise with endometriosis, PMS, or benign cysts among other things. But mine kept rising.

Then, after the MRI, where I closed my eyes and imagined myself lying on the beach with a soft breeze for over an hour, I fell through the cracks for about another eight weeks. I heard nothing. I thought no news was good news…right? But in March, it was gnawing at me. I called my doctor. They had not received any results. I cringed at the thought of calling that secretary who called me hysterical simply for asking questions, and for making me justify not only my intelligence, but also making me feel guilty for taking up her time.

Immediately following my call, however, I was squeezed in to see the gyneoncologist again. “I was wrong,” she said, and Henry’s jaw dropped – he thought everything would be easy and okay. “It’s not an endometrioma. I am very suspicious.” So I had my first surgery scheduled the following week.

“It looks good,” she said after I was barely awake from the anesthetic, shaking until they bundled me in five blankets and administered morphine. Then, she was gone.

As I was (and am still recovering), I thought that my April 29th appointment for my pathology report would show up benign. Everything was supposed to be fine. Everything in the process of medicine goes so very quickly. Everything can fall through the cracks if you don’t follow up with our own health. It of course showed up borderline, as I mentioned yesterday. This time, she expressed her concern again, and recommended that I have another surgery to take out everything.

The entire time I felt it, even though everyone pressed me to doubt it. Maybe they were just afraid and wanted everything to be okay. Since that time, many of my girlfriends are getting themselves tested, but what I want to express to women is just listen to your own body. While everyone, including some of the finest doctors told me not to worry, and that I would be fine, there has been an issue with each subsequent visit. When my mother was sick for two years with pus running out of her eye, doctors told her it was nothing, until finally she was diagnosed with renal cancer. The point is, people are busy, most cases ARE benign, but it’s prudent to continue to pursue the feelings in your gut.

You have to listen to the whispers, be they physical or something deep inside telling you something. You even have to listen to all your fears and move through them, I think. For my health, listening may have just saved my life. For my son, listening to my own instincts may have, in many ways, saved his, for he is doing really well without popular “interventions.” (Early interventions, folks, are for serious, life-threatening diseases, not for people with disabilities like autism who deserve assistance and an education). The process of studying and educating him has been following him and trusting myself -- not listening exclusively to other people, but gathering the information and becoming selective as to who can assist us. No matter who tells you how crazy or hysterical you are for not doing something that is popular, weigh it all in carefully, study, and then listen to yourself and your child. There may be fear, but we must all use it wisely, not let it use us up. Fear is harming too many autistic children as it is.

As for any fears I have at the moment, here they are so written and to be used usefully, I hope, by anyone who cares to listen.

All Truth Passes Through 3 Stages:

First: It is ridiculous
Second: It is violently opposed
Third: It is accepted as being self-evident



Anonymous Anonymous said...

I am with you 101% and yes cancer screening is so important. But in reality I think everyone thinks this can never happen to them, only someone else.


1:10 PM  
Blogger farmwifetwo said...

Over on Trusera yesterday I wrote a story "Stand up for yourself".

I have been fighting for my "looks normal" son (who has NVLD - in Gr 3) to be psychometrically tested. The child psych we saw a month ago said "do it". School did the Wilcock-Johnston Academic - but it's "average". I know he's BRILLIANT and he's hiding the weaknesses.

The psychometrist called yesterday. Patted me on the head until I cut him off and said "it's wrong".

After I told him what my concerns were there was a pause "we are full until June but we do some kids during the summer so they are ready for the fall".

We go in July.

Sometimes you just have to stand up for yourself.

Hope you are feeling better soon and all the surgeries go well. Mom's friend died of ovarian cancer b/c she didn't stand up for herself.


6:39 PM  
Blogger kristina said...

Your post reminds us of how as mothers we have to take care of ourselves to help take care of those who so need us. There's a quote from George Eliot's Daniel Deronda in my head:

"Take your fear as a safeguard."

take lots of care!

8:31 PM  
Blogger Estee Klar-Wolfond said...

Yes, I admittedly don't love going to doctors and tend to just work and ignore my health. I did this until I couldn't ignore it anymore. I must have also a "sensitive" nervous system like Adam because most women ignore the whispers until it's too late.

Now, I am completely re-thinking my priorities and how I structure my day and work so that it includes paying attention to my health, without letting the latter consume me, either.

8:06 AM  
Anonymous Anonymous said...

Just so late in catching up with your blog. I want to add my heart to the circle of those that are praying for you and keeping you close. I'm sorry you've been through so much, and also extremely grateful for the way you share your experiences and your strength so freely.
Em's Mom

3:57 AM  

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