previvor

September 13, 2014 in family history, genetic research, medical history by Ami McKay

coming to terms with what lurks within your DNA

coming to terms with what lurks within your DNA

Previvor. Are you familiar with the word? Chances are if you’ve seen or heard it before, it’s been in reference to someone who carries one of the BRCA genes that predisposes them to breast and ovarian cancer. (Think Angelina Jolie.)

BUT the thing is, by it’s definition, the word previvor can and does apply to ALL those who carry a hereditary mutation that predisposes them to a specific type (or specific types) of cancer. For instance, if you’ve tested positive for the FAP mutation but haven’t had cancer, you’re a previvor. If you carry one of the genetic mutations for Lynch syndrome (like me,) but haven’t had cancer, you’re a previvor.

A little history lesson. 

How did the term “previvor” originate? According to FORCE (Facing Our Risk of Cancer Empowered- an organization that does an excellent job of raising awareness of hereditary breast and ovarian cancer) the word has an interesting origin, one I find quite fitting in our 21st century world of increased patient awareness and Googleized medicine.

“Cancer previvors” are individuals who are survivors of a predisposition to cancer but who haven’t had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor. The cancer previvor term evolved from a challenge on the FORCE main message board by Jordan, a website regular, who posted, “I need a label!” As a result, the term cancer previvor was chosen to identify those living with risk. The term specifically applies to the portion of our community which has its own unique needs and concerns separate from the general population, but different from those already diagnosed with cancer.

The medical community uses the term “unaffected carrier” to describe those who have not had cancer but have a BRCA or other cancer-predisposing mutation. The term applies from a medical perspective, but doesn’t capture the experience of those who face an increased risk for cancer and the need to make medical management decisions. Although cancer previvors face some of the same fears as cancer survivors, undergoing similar tests and confronting similar medical management issues, they face a unique set of emotional, medical, and privacy concerns. – From Facingourrisk.org “Cancer previvors.”

I’ve heard of BRCA previvors, why haven’t I heard anything about their Lynch Syndrome counterparts?

Although I became aware of my family’s specific mutation for Lynch syndrome in the 1990’s and tested positive for MSH2 in 2001, I really didn’t think much about this question until quite recently. I suppose, like many who were among the earliest to be tested, I figured I was facing a situation that was rare, specific to my family, and nothing that would be of much interest to others. Also, at the time that I first learned of HNPCC (Lynch syndrome) and it’s place in my family tree, there was quite a lot of fear surrounding the issue, fear that raised loads of questions for anyone who was considering being tested. Could insurance companies drop you if you tested positive? Could your employer fire you? Was I better off not knowing? Even if I choose to have the testing done, should I keep the results under wraps?

Things have changed, right? There are laws to protect against genetic discrimination. So why don’t more people know about Lynch syndrome?

Were the genetic mutations for BRCA discovered first? Nope.

The DNA research for a genetic mutation responsible for HNPCC (Hereditary Non-polyposis Colorectal Cancer) or what would come to be called Lynch Syndrome was happening at about the same time as the research for BRCA (although the international race to find the BRCA gene was far more publicized.) In fact, the Lynch syndrome gene that’s in my family tree, MSH2, was discovered in 1993. BRCA1 and BRCA2 were confirmed in 1994 and 1995 respectively. (And if you’d like to tuck a little more hereditary cancer research trivia away in your brain, the APC gene reposonsible for FAP (familial adenomatous polyposis) a condition that leads to developing numerous polyps mainly in the large intestine, was isolated in 1991.)

Surely BRCA is more prevalent? Nope. 

The facts are these: “Many people, including doctors, think that Lynch syndrome is rare. It’s just as common in the general population as the much more known BRCA genes associated with hereditary breast cancer. One in four hundred (1/400) Americans is walking around with a Lynch syndrome mutation, whether they know it or not.”  – Dr. Larry Geier M.D. genetic oncologist at the University of Kansas Cancer Center.

Why do we find it easier to talk about breast cancer than colorectal cancer? Boobs trump poop, every time. 

I’m being a bit cheeky (see what I did there?) but you know I’m right. Right? Until we get over our queasy, adolescent willies when it comes to talking about our bowels, then people (strangers, friends, family and loved ones) will continue to suffer (and die) because they’re too embarrassed to admit they have “trouble in the deeps” or blood in their stool. I grew up with a grandmother who was absolutely shameless when it came to asking family members if they’d “had a good b.m. today?” She didn’t care how it sounded to others or if it caused offence. Long before genetic tests and the word “previvor” she knew that talking about your poop could mean the difference between life and death.

Lynch syndrome only involves colon cancer? Not by a long shot!

Colorectal and endometrial are the two cancers most frequently associated with LS, but other associated cancers include, stomach, bladder, heptobiliary, small intestine, ovarian and brain. Research is currently being done to see if certain types of breast cancer are also associated with it.

have you had a good bm today?

have you had a good bm today?

Here’s the deal…

I know I’ve made a lot of comparisons between BRCA previvors and Lynch syndrome previvors in this post. It’s not to favour one over the other, but to simply make a point, that we’re at a crossroads when it comes to medical science and health care, and we need to increase awareness of ALL hereditary cancers. As researchers move forward with their work, more genes will be discovered, more lives will be touched, more humans will be added to the list of “previvors” and thus given the chance to participate in the course of their care.

All previvors have similar concerns. We have screenings to schedule (for Lynchies that includes colonoscopies, blood tests, endometrial biopsies, transvaginal ultrasounds, and ultrasound of the bladder and upper urinary tract as well as urinary cytology.) We have prophylactic surgeries to consider (for those with LS its sub-total colectomy and, if you’re a woman, hysterectomy.) We have family histories to uncover, children to worry over, and an ever-present list of symptoms to track.

If you’re new to my blog, or to Lynch syndrome (or you’re looking for a way to explain it to others,) this video featuring the aforementioned Dr. Larry Geier, gives an excellent overview of what it is and what to look for when tracing a history of colorectal cancer in your family.

Thanks for reading, and boldly go!

People and places and resources related to this post.

FORCE (for Hereditary Breast and Ovarian Cancer support)

FAP Gene support group

Fight Colorectal Cancer’s Lynch syndrome primer (could it be in your family tree?)

LSI (Lynch Syndrome International)

 

 

 

Down the hatch, without a scratch.

February 22, 2014 in family history, medical history by Ami McKay

"Champion Sword Swallower" - attributed to Neiman Eisman

“Champion Sword Swallower” – attributed to Neiman Eisman

Happy World Sword Swallower’s Day!

Two important threads have run throughout my work as a writer in recent years. One is my passion for exploring stories that are inspired by events or movements in medical history, and the other is my admiration and respect for sideshow folk. While writing my play, “Jerome, the Historical Spectacle” (which features a traveling band of Victorian sideshow performers) I also began the research for writing my second novel, “The Virgin Cure.” The novel contains a character based on my great great grandmother, Dr. Sarah Fonda, who in real life became the first female physician to be accepted into any medical society in the United States. In the novel, “Dr. Sadie” is friend to dime museum owner Mr. Thadeus Dink who also runs a theatre and sideshow on the premises. One scene in the book depicts Dr. Sadie visiting the museum’s resident sword swallower,  Miss Eva who is suffering from a case of “sword throat.” (Thanks to Google and some helpful tweets from two amazing present-day sword swallowers, Dan Meyer and Lady Aye, I was able to get the details right.)

Edith Cliftord depicted on a card from Messers Chewing Gum (circa 1910)

Edith Clifford depicted on a card from Messers Chewing Gum (circa 1910)

Dr. Kussmaul’s rigid endoscope

Imagine my wonder and surprise when my research further revealed that there was an even greater connection between the art of sword swallowing and the history of medicine…

In 1868 Dr. Adolph Kussmaul (on the recommendation of his colleague, Dr. Mueller) carefully observed a sword swallower paying special attention to the way he positioned his head for the passage of a long straight sword. Impressed with what he’d witnessed, he then decided to examine the sword swallower himself.

“For this purpose, he had a local instrument maker fashion tubes 47 cm long and 13 mm in diameter, one being round and the other elliptical in design, the tubes fitted with conical wooden mandarins to facilitate insertion. Using the straight tube, mirrors and a gasoline lamp, Kussmaul inspected the esophagus and the fundus of the stomach, thereby performing the first successful esophagoscopy/esophagogastrostomy on a sword swallower.The sword swallower tolerated the long tubes well, but the examination was disappointing because the light was too weak to illuminate the field so far from its source. Also, despite washing out the stomach, fluid constantly collected around the tube and hindered the view. After considerable experimentation, Kussmaul and Müller managed to improve the light of their endoscope, and subsequently examined a number of patients. Kussmaul was so pleased with his success that he took the sword swallower with him to perform demonstrations in various clinics, and later enlisted other sword swallowers due to their ability to voluntarily relax the cricopharyngeal muscle and form a straight line from the pharynx to the stomach, allowing passage of the rigid endoscope. Today Kussmaul is recognized as being the developer of the first rigid endoscope.” – from the History of Sword Swallowing at Swordswallow.com

Those with or without Lynch syndrome who have benefited from the procedure we know today as endoscopy owe their thanks to a curious, ingenious doctor and a brave and willing sword swallower. “Down the hatch without a scratch!”

Here’s Lady Aye in action during an appearance on the show, “Oddities.”

And here’s Dan Meyer, President of Sword Swallowers Association International accepting the 2007 “Ig Nobel Prize” in Medicine with Dr. Brian Witcombe, Radiologist at Gloucester Royal Hospital, for their medical research on sword swallowing injuries. The collaboration between sword swallowers and medical researchers continues!

Notes: For more information about the research conducted by Meyer and Witcombe (and 46 SSAI volunteers) read this excellent Scientific American Article by Jennifer Ouellette. “By the Sword.”

The official declaration of World Sword Swallowers Day 2014 at SSAI

For more history on the art of sword swallowing go to SwordSwallow.com

Wikipedia page for Dr. Adolf Kussmaul

More about my novel, The Virgin Cure

 

 

Prep and Landing

February 2, 2014 in colonoscopy, Uncategorized by Ami McKay

"Diverticulosis" by Penny Oliver

“Diverticulosis” by Penny Oliver

Tomorrow I’ll make my way to the hospital for my thirteenth annual colonoscopy. Fingers and toes crossed, all will be well. Lucky thirteen!

Even though I’ve been through the procedure many times before, seeing the date for my appointment circled on the calendar still makes my belly lurch, still jangles my nerves, still pushes my “youngest child” buttons, leaving me wishing I could hide in a laundry hamper, cloaked in my mother’s bathrobe for a good long while. I understand these feelings come from fear -a very real, deep, justified, generations-old fear, nagging in the back of my brain. I also understand that I must not let my fear win.

Colonoscopies save lives.

That statement isn’t just some phrase gastroenterologists and colorectal cancer awareness advocates spout off for effect. It’s a proven fact. A pre-cancerous polyp found and removed during a colonoscopy can prevent cancer from ever occurring. A tumor found early via a routine scope can lead to life-saving surgery and treatment. (Just ask my brother. His CRC was caught very early during an annual colonoscopy. Now Mr. Semi-colon Smarty-Pants regularly trains for and competes in triathlons. Way to go, bro! )

I know...this caption ignores the place of tricorders in the Star Trek universe. Still, it's pretty funny.

I know…this caption ignores the place of tricorders in the Star Trek universe. Still, it’s pretty funny.

From the trenches

Although I may feel somewhat anxious about the prep and procedure, I know that showing up for my annual colonoscopy is one of the most important things I can do for myself and my family. No matter if your medical history requires it (as it does with Lynch Syndrome,) or if you’re having symptoms that need to be checked out, or if you’re of an age where it’s time for you to suck it up and commit to the purge; I promise you, if you stop and think about the bigger picture and what you stand to lose if you let things go, you won’t regret making and keeping your appointment.

To that end, (pun intended) here are a few things I’ve learned over the years that have made the prep and landing easier.

Colonoscopy Tips and Tricks a la Ami

(Disclaimer: the information in this post should NOT be considered a substitute for medical advice. Always follow your doctor’s instructions when it comes to health care!)

 *Make a Game Plan (about a week or so before the big day.)

– Make sure you’ve made arrangements with and informed work, school, family and friends. (Do your best to get over the “ick” factor when talking to others about it. It’s important to own what’s going on. A colonoscopy is just as important and valid and normal as any other event in life that requires a day off!)

– Pick up your prep a few days before (especially if it’s new to you.) That way you can read through the instructions and still have time to call your doctor if you have any questions.

– Plan meals for THREE days (prep day, the day of your procedure and the day after) ahead of time. According to your doctor’s instructions you’ll be on a clear liquids diet for the prep, so you’ll want to pick up those foods and drinks and have them on hand. (Hello, Jello!) Also, if you’re the person in your household who plans and cooks most of the meals, then turn those duties over to someone else for those days if possible. You’ll need to concentrate on the prep, you’ll be a little weak from not eating, and you’ll want to ease back into your belly afterwards, so it’s nice to not spend time in the kitchen if you don’t have to.

-Arrange your ride to and from the hospital or doctor’s office. (Don’t forget – no driving or life-altering decisions for 24 hours, peeps.)

*Three days before

– Eliminate nuts, popcorn, seeds from your diet. (Some doctors say five or even seven days. Follow your doctor’s orders, please!)

– Meat eaters might want to refrain from red meat, or all meat if possible.

*Two days before

– Eliminate fruit skins (or fruits with skins/seeds, berries, etc.) and leafy roughage.

– Eliminate foods that are red, orange, purple.

– Meat eaters switch to fish or go meatless.

-Taper food intake during the day before the prep. (Make each meal smaller than the previous one.) I know the impulse might be to “load up” before prep day by eating favourite foods and perhaps more than usual, but when it’s go time you’ll regret it.

– Mix up your jello the night before your prep day so it’s already set in the fridge and ready to eat.

*Prep day! I was always a keener in school, so I take a fair bit of pride when my doctor praises me for having done a fabulous job when it comes to the colonoscopy prep.(I’m the Lisa Simpson of colonoscopies!) All joking aside, it’s incredibly important to put your best efforts into having the most effective prep possible. If your colon’s not clear, then you run the risk of the doctor missing a polyp or even having to turn you away because he/she couldn’t get a good enough view. (You know what they say…the only thing worse than a colonoscopy is TWO colonoscopies.)

– Don’t cheat. Follow your doctor’s instructions to the letter. Stick to the clear fluid diet. Drink ALL the prep at the right times. Drink plenty of fluids. Drink plenty of fluids. Drink plenty of fluids. (Gatorade, or something similar helps to keep your electrolytes in balance. Better than water alone)

– Pack what you need for the hospital/appointment. Medical and insurance cards, paperwork, comfortable clothes, reading materials, etc.

– Wear comfortable clothes during prep. Lose fitting pants are a must.

– If being hungry bothers you, avoid TV with commercials, women’s lifestyle/food magazines, food blogs, and Pinterest recipe boards. This year my prep is on Super Bowl Sunday…so, it’s novel reading and Netflix for me. (Sorry, Payton!)

– Keep baby wipes on hand in the bathroom, they’re much gentler than toilet paper on the tush.

– Keep extra reading materials in the bathroom. Maybe a radio or iPod, too.

– Curling up with a heating pad on your belly can help ease gassy cramps.

– Some people have special tricks to help the liquid prep go down easy such as refrigerating it, mixing it with various drink powders or sodas, etc. I live in Canada and have used Pico Salax for quite a while, so I don’t have many complaints when it comes to ingesting my prep. For those of you who do have difficulty, take it easy, try not to stress and keep your goal in mind. I know it can be quite a challenge! Don’t be afraid to let your doctor know if your prep medicine is causing you distress. She/he should be able to give you advice and/or adjust things to make it easier to ingest.

*Day of the Procedure

– Don’t be embarrassed to wear an adult diaper to your appointment. I live nearly an hour from the hospital, so I’d rather be safe than sorry.

– Ask the nurse for a pillow to place between your legs when you’re in recovery. (Pulling your knees up and putting the pillow between your legs can help you pass gas.)

– Ask the person picking you up to have a bottle of water and/or other liquid such as Gatorade on hand for the ride home. You’ll be thirsty and need the fluids!

– Ease back into eating. Try to resist the impulse to wolf down a big meal. This is your chance to be kind to your body and make a fresh start. Think pro-biotics, think easy on the digestive system. You’ll be back to normal soon enough.

Last but not least …

– Be proud of yourself for making this a priority.

– Thank your doctor and his/her team. (I have a torturous colon, so my doc. gets mad props from me!)

– Don’t forget to laugh!

NOTES:

The artwork featured at the top of this post is by the talented artist, Penny Oliver, who has created many paintings inspired by anatomy and medicine. You can see more of her work at Diagnosis Art.

If you’ve ever wondered about the finesse required to perform a colonoscopy, this article will give you a better idea of the challenges your gastroenterologist faces on a daily basis. Colonoscopy: Art or Science.

Skin Deep

January 20, 2014 in family history, genetic research, medical history by Ami McKay

Hair Follicle Triplet - by Dr. Alexander Meves

Hair Follicle Triplet – by Dr. Alexander Meves

A few years ago I had a mole on my left forearm that went rogue. My youngest son, who was only seven at the time was the first to notice the change. “That looks weird, Mom,” he said. “I don’t like it.”

I’ve always been a freckled, somewhat mole-covered individual, so I didn’t think much of his comments at first. Thankfully, the kid wouldn’t allow me to dismiss his observations. He leaned on me until I made an appointment to have it looked at by a professional.

The dermatologist agreed with my son. The mole was suspicious and needed to be removed and tested, immediately.

When the test results came back, I was given the diagnosis: “Melanoma in situ.” Translation: The mole was Stage 0. Abnormal melanocytes were found in the epidermis. These abnormal melanocytes could  become cancer and spread into nearby normal tissue. I made appointments for day surgery to have the surrounding tissue removed and to have a few other tests.

While I waited for the next round of test results, I beat myself up over the times my fifteen-year-old self had slathered suntan oil on my body and laid-out on the roof of the woodshed in my parent’s backyard. If I’d only known then what I know now. Stupid girl. No one cares that you didn’t go to Florida on spring break.

"Deep Impact" asteroid body, H&E stain, by Craig Roelke, M.D.

“Deep Impact” asteroid body, H&E stain, by Craig Roelke, M.D.

What’s that got to do with Lynch Syndrome?

While the discovery of my rogue mole and the subsequent diagnosis most likely wasn’t directly related to Lynch Syndrome, the experience did lead to my making annual visits with a dermatologist a priority. Once the doctor found out that I had Lynch Syndrome with the MSH2 mutation, he also began looking for outward signs of Muir-Torre Syndrome as well as suspicious moles.

What’s Muir-Torre Syndrome?

Muir–Torre Syndrome (MTS) is a rare hereditary, autosomal dominant cancer syndrome that is thought to be a subtype of HNPCC (or Lynch Syndrome). Individuals are prone to develop cancers of the colon, breast, and genitourinary tract, and skin lesions, such as keratoacanthomas and sebaceous tumours. The genes affected are MLH1, MSH2, and more recently, MSH6, and are involved in DNA mismatch repair. – from Wikipedia.

People with Muir-Torre syndrome are also at risk for developing certain skin changes in adulthood that may form in the sebaceous glands. The sebaceous glands are located just under the skin and produce an oily substance that is a part of sweat called sebum. The typical skin changes found in Muir-Torre syndrome are sebaceous adenomas, sebaceous epitheliomas, sebaceous carcinomas, and keratocanthomas. Most of these skin conditions are associated with noncancerous lumps on the skin, some of which are liquid-containing cysts. Basal cell carcinoma, a common type of skin cancer usually related to sun exposure, has also been reported in people with Muir-Torre syndrome. Only the skin carcinomas are cancerous. Muir-Torre syndrome is also associated with rare cancers of the sebaceous glands. If a cancer of the sebaceous gland is diagnosed, it is recommended that the patient talk with a genetic counselor or geneticist (a doctor with training in genetic diseases and conditions) that is familiar with the syndrome as part of his or her medical care. – from Cancer.net

In other words, if you’ve got Lynch Syndrome (specifically with the MLH1, MSH2, or possibly the MSH6 mutation) you should consider adding an annual  dermatological screening to your list of things to do.

"Party in the Papillary Dermis" - by Allison Arthur, M.D.

“Party in the Papillary Dermis” – by Allison Arthur, M.D.

Long ago, my mom had mentioned the possibility of Muir-Torre syndrome being part of our family’s medical history profile, but I’d only paid close enough attention to remember the name. When my dermatologist brought it up during one of my appointments, I finally began to put the pieces together. It’s easy to overlook the lumps and bumps of aging and dismiss subtle changes in your sebaceous glands etc. That’s why it’s so important to have a trained set of eyes on your body once a year. It’s my understanding that sometimes these changes come after CRC has arrived, sometimes in concert, and sometimes they act as a herald, a possible first sign that a tumour  is about to form inside the body as well as on the skin. The important thing to remember is that the research for MTS is ongoing and in some cases, suspected MTS may help lead to testing for Lynch Syndrome in those who haven’t been diagnosed.

I’m writing about Muir-Torre Syndrome here, not to give those with Lynch Syndrome yet another thing to fret over, (heaven knows life with LS can feel like an endless series of pokes and prods in the name of medical vigilance) but to give you another tool to add to your toolbox of awareness. For those of you with an unconfirmed but suspected history of LS, perhaps this post will help you shed further light in tracking hereditary cancer down in your own family.

Mind your lumps and bumps, people!

NOTES:

1. I didn’t post any images of the skin lesions associated with Muir-Torre Syndrome because I don’t feel comfortable making the leap between online images and self-diagnosis. If you have any spots, irregularities, growths or lesions on your skin that are suspicious, please seek the advice of a medical professional.

2. Excellent information about Muir-Torre Syndrome can be found here:

Muir-Torre Syndrome at Cancer.net

Full Wikipedia page on Muir-Torre Syndrome

Muir-Torre Syndrome (including a break down of associated skin lesions by type) at DermNet NZ

3. Artwork for this post came from a gorgeous collection of Dermatology Art curated by Mayo Clinic Dermatologists.  “Dermatology Art Shows Beauty Really is Skin Deep.”

 

I sing the body electric

January 3, 2014 in colonoscopy, coping, medical history, Uncategorized by Ami McKay

grace

“grace” by Jason Thielke

Happy New Year.

There’s a blizzard raging outside my window right now, but I’ve got a fire roaring in the wood-stove and a hot cup of tea nearby, so this girl-in-a-snowglobe is doing all right. I hope you’re safe and warm and content for the start of 2014 and that you’ve got big beautiful plans for the year ahead.

In my usual New Year’s fashion, I’ve spent the last couple of days putting things in order and wishing on stars. Writing projects have shifted from dreams to outlines to full-on works in progress, and sticky note reminders of annual screenings have been converted into doctors’ appointments with dates and times scrawled on the calendar. (Dermatologist once over, end of January. Colonoscopy, the first week in February. Wheee!) There’s a lot to look after in my swirling TARDIS of a brain, and  I’m always searching for the best way to keep track of it all.

Rhythms and patterns and leitmotifs, oh my.

I learned to read music and the written word in tandem. It made for an interesting childhood, one where I was constantly searching for meaning in melodies, and for hidden patterns and rhythms within language. Even now it’s difficult for me to read through anything I’ve written and not obsess over the cadence of my work and the repetition of certain words and phrases. My journals are riddled with the words “hope,” “hopefully,” and the superstitious two word phrase nestled between asterisks, *touch wood.* (Strangely enough, I write that little charm far more than I speak it.)

As odd as it seems to obsess about such things, I’m thankful that my mind works this way. If it hadn’t been for my dedication to writing about my state of being (emotional and physical) on a daily basis, I’m certain I wouldn’t be as proactive as I am about my health.

Prophetess_Thielke

“Prophetess” by Jason Thielke

Tracking Wellness

From a practical standpoint, it’s easy to see why keeping a written account of one’s health is a good idea. Notes on diet, medications, physical activity, physical symptoms, sleep cycles, pain locations and levels, emotional well-being, doctor’s visits, (and, if you’re female, your monthly cycle) are a valuable source of information for you and your healthcare team. On a broader scale, being vigilant about recording these stats on a daily basis will help you to see the bigger picture when it comes to your health. In as little as a week, patterns begin to emerge- some that may address questions you’ve been struggling for years to answer.

I simply make written notes in my journal alongside the rest of my personal scribbling for the day. Other options are to keep a separate health journal (either written or on your computer,) or to use a health tracking app on your smart phone or tablet. (A couple of apps that have been recommended to me include:  ihealth log, and symple – symptom tracker and health diary.)

"entwined" - by Jason Thielke

“entwined” – by Jason Thielke

Soothing the Beast

Allow me to add a few more words in favour of the written word. Apps are convenient, it’s true, and click-clacking one’s thoughts on a computer’s keyboard is easy and fast, but something more happens when you put pen or pencil to paper and let your thoughts flow through your body on to the page. Writing about one’s health often carries a lot of emotional baggage along with it. Guilt, confusion, worry, fear, anger, frustration are all part of the language of my condition. For me, writing by hand, especially when it comes to Lynch Syndrome, is akin to meditation. Once my hopes and fears are set before me, I’m free to address them in brave new ways.

“When you are writing something down with pen and paper, you are stimulating a collection of cells at the base of the brain known as the reticular activating system. The RAS is the filter for all the information your brain needs to process and it gives more attention to what your are currently focusing on. The physical act of writing brings the information to the forefront and triggers your brain to pay close attention.” (from “How Does the Act of Writing Affect your Brain?”)

This is especially true when it comes to dispelling anxiety. A study published by the University of Chicago in 2011 showed that “students who were prone to test anxiety improved their high–stakes test scores by nearly one grade point after they were given 10 minutes to write about what was causing them fear.” Senior researcher Sian Beilock also found  “that pressure–filled situations can deplete a part of the brain’s processing power known as working memory, which is critical to many everyday activities. Working memory is a sort of mental scratch pad that allows people to retrieve and use information relevant to the task at hand. But it is a limited resource, and when worries creep up, the working memory people normally use to succeed becomes overburdened. That can sap the brain power necessary to excel.”

In other words, writing through our worries and concerns leads us to a better state of mind, and as a result, to better lives.

How do you keep track your health?

Notes: This post included ideas and art from the following places…

ihealth log app

Symple – symptom tracker and health diary

How Does the Act of Writing Affect Your Brain? inforgraphic

Writing About Worries Eases Anxiety – University of Chicago

The gorgeous laser etched art of Jason Thielke

Insides Out

December 6, 2013 in coping, family history, gynecology, Uncategorized by Ami McKay

 

"Exquisite" by Susan Messer. (Part of the Exquisite Uterus Project)

“Exquisite” by Susan Messer. (For the Exquisite Uterus Project)

 

In the dark of the year, while I’m counting the days until there’s more light, I’ve decided to write the story of how I came to give up my womb.

December 2012

This time last year, I began having recurring, right-sided abdominal pain. Although it seemed as if I was having all the symptoms of a gallbladder attack, I worried that it might be something more. (In my family, colorectal cancer has often been heralded by such pains.) My family doctor understood my concerns, and immediately began searching for answers. She ordered blood work, an abdominal ultrasound, a ct scan and a colonoscopy. While working through my string of appointments, I instituted restrictions and changes to my diet in hopes of eliminating anything that might have created the problem. But to be honest, even when a vegan diet helped ease some of the pain, I still couldn’t stop wondering if I might have colon cancer. Awareness vs. worry is the double-edged sword you carry when you know you have Lynch Syndrome.

January 1, 2013       “I wept after midnight – not my usual way to ring in the new year. Excitement and resolutions feel overwhelming when there’s illness looming. Not sure I’ve ever felt such a lack of promise in a coming year. I’ll try to make the best of it by holding on to one wish – to make magic, always.”

created by Christine McCullough for the Exquisite Uterus Project

created by Christine McCullough (for the Exquisite Uterus Project)

January – April 2013

Much to my relief and bewilderment, every test came back clear. My blood work was good. The ultrasound showed no signs of gallstones or inflammation or “sludge.” My colonoscopy was clean. The only blip on the radar was a faint shadow on my ct scan indicating I had an ovarian cyst.

Meanwhile, I’d been keeping track of everything in my daily journal – every morsel of food and every cup of liquid I put in my belly, every step I’d taken – running, walking, hiking. When the pains struck again, I tore through the pages of my journal searching for any kind of pattern I could find. Oddly enough, the pain and my digestive troubles seemed to be tied to my monthly cycle.

May 2013

The day Angelina Jolie’s op-ed “My Medical Choice” was published in the New York Times, every branch of the media, traditional and social was buzzing with news of her preventive double mastectomy.

Words like brave and courageous were immediately used to describe her decision, alongside pointed remarks such as “medical fear-mongering” and “acting out of fear.” I linked to the article on my personal facebook page, knowing friends would be wondering what I thought about it. While her genetic mutation isn’t the same as mine, the topic of prophylactic surgeries (in my case hysterectomy and subtotal colectomy) was something I’d discussed with friends and family, as well as with my doctors in the years since I’d gotten the results of my genetic tests.

May 15, 2013 “I’m glad she feels confident in her choice and that she’s chosen to tell some of her story. More importantly, I’m glad she’s opened the door to conversation on the topic of testing for genetic mutations for cancer. There are women and men, right this moment, dealing with the implications that come from living with a genetic mutation for any number of cancers (and their various associated cancers.) Will I have my colon removed, my uterus, my ovaries, my breasts? The list of body parts seems to get longer every year.”

And then it hit me. Menstrual bleeding that had become quite heavy the year before, was getting progressively worse. In the past few months of worry over my guts, I’d shoved the knowledge of the very high risk of uterine cancer for women with Lynch Syndrome (especially those with my specific mutation) to the back of my mind. I’d been getting annual screenings, but my gynecologist was the first to admit that the surveillance methods for detecting gynecological cancers aren’t as reliable as colonoscopies are for spotting colon cancer. Suddenly the screening regimen I’d been following for the past decade no longer felt like it was enough.

"Free Will Offering" by Christine Pierce (for the EUP)

“Free Will Offering” by Christine Pierce (for the EUP)

I was done having kids, so making the decision to have a hysterectomy should’ve been simple enough, right?

Not in the least.

Yes, I was done having children, but it wasn’t as simple as that. I still had a fondness for the uterus that had shed its lining like clockwork since I was eleven, for the womb that had carried and nurtured my two sons. I’d had my share of “girl troubles” over the decades, nasty cramps and monthly migraines that had started when I hit puberty, as well as more recent rounds of heavy bleeding that had left me so drained and dizzy during my period I was afraid to leave the house. Still, I’d wanted to stick it out, hoping my problems would disappear once I reached menopause. A quick Google search of “hysterectomy complications” left me even more conflicted. (Talk about entering a world of fear and trembling.) It’s hard to think of benefits while you’re staring at a long list of risks.

Why couldn’t my body see itself through this mess? I wondered. I was as connected to my menses as any wisewoman I’d ever met. I’d never even called my monthly cycle “the curse.” I’d paid attention to my body my whole life, never smoked, rarely drank, ate whole, organic foods whenever possible. I’d spent years of my life researching the history of women’s reproductive health, made documentaries about midwifery past and present, created an entire novel out of my reverence for pregnancy and birth. (I swear my brain was a second uterus during the writing of The Birth House.) For years I’d been surrounded by women’s birth stories every time I spoke in public. I adored being immersed in that world and bearing witness to the struggles and strength of women. How could I possibly choose to abandon my womb?

Eunice Choi's contribution to the Exquisite Uterus Project

Eunice Choi’s contribution to the Exquisite Uterus Project

My mother had a hysterectomy when she was in her late thirties. All I can remember from that time is sitting next to her lawn chair in the backyard, grass prickling my bare legs while I stole sips from her rum and Coke. She’d avoided/evaded/escaped endometrial cancer, but would later be diagnosed with colon cancer, twice. She’d died just a few months after completing her second round of chemo. I couldn’t stop thinking of the words she’d said to me after her first diagnosis. “I’m angry. I feel like my body has let me down.”

I called my older sister to ask if she could remember what had led to my mother’s hysterectomy. The symptoms she listed sounded much the same as mine. As soon as our conversation was over, I hung up the phone and called my gynecologist.

At my appointment, we talked through various options, and what surgery might be right for me. Although it wasn’t an emergency, my gynecologist was quite concerned about my well-being and suggested we put a rush on the date. After I’d agreed that sooner was better than later he asked, “were you going to suggest we wait?”

I shrugged and said, “Just until I’ve finished my current novel’s draft.”

Shaking his head he said, “You’re forty-four. You have Lynch Syndrome. Think of how you’d feel if cancer arrived while you chose to wait.”

I knew he was right. What I couldn’t tell him was that although he was clear and kind and open with his advice, I was still struggling with my decision. Saying yes to the surgery meant letting go of a secret, beautiful dream I’d been keeping to myself – one in which I never needed to worry about cancer, one in which every test I ever took came back clean because I was, by some miracle, a superhero within my family tree – the girl untouched by Lynch Syndrome.

"My own Bayeux Tapestry" by Alison Gates (for the EUP)

“My own Bayeux Tapestry” by Alison Gates (for the EUP)

July 23, 2013. “Birdsong, sunrise after a full moon night.”

Two days before my 45th birthday, I was admitted to hospital for a hysterectomy. I made it through the surgery without too many bumps or bruises, and was released in time to go home for cake.

During my six week recovery there was pain, fatigue, night sweats, crying jags, and lots of rules (no soaks in the bath tub, no lifting anything heavier than a tea kettle, no this, no that.) I had an amazing support team at home headed up by a spouse who was willing see me through the laughter and the tears, the healing and the loss, (not to mention an intense case of “cancerhead” during the wait for my pathology results.) Thank heavens everything, including some nasty fibroids, were clear!

Even with my family around me, I couldn’t shake the feeling that I needed to shield others from my recovery process. I apologized for my lack of energy, my impatience and my blues. No wonder women tend to disappear after the surgery. I found it difficult not to feel like a lump of uncertain, unfocussed flesh. Still, I walked a bit further down the road each day, gaining more strength in body and spirit. When life only allows for one goal to be met each day, the setting (and meeting) of that goal takes on an air of magic.

"That's What She Said'" by Michelle Ciarlo-Hayes (for the EUP)

“That’s What She Said'” by Michelle Ciarlo-Hayes (for the EUP)

December 5, 2013

Five months on, I feel I made the right choice. I have more energy now than I had before the surgery, and the weight of worry that I’d felt over the impending threat of endometrial cancer has been lifted. (Plus, just knowing I’ll never have another endometrial biopsy makes me smile!)

Working up the courage to write about my hysterectomy was more challenging than I’d expected. In some ways my body has healed faster than my heart. I plan to write more about the ins and outs of my surgery and recovery in the days to come, but for now I’ll leave you with the following quote. It’s one that’s inspired me for many years, and has seen me through some difficult times. Perhaps it can help you in your journey, wherever you might be headed, as well.

“And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom.” – Anais Nin

A note about artwork: The images included in this post come from an amazing art collective called “The Exquisite Uterus Project : The Art of Resistance.” Special thanks to Helen R. Klebesadel for allowing me to share them on my blog. You can find out more about the project, the contributing artists, and see the entire collection via the following links:

The Exquisite Uterus Project

Exquisite Uterus on Pinterest

 

TWITs

November 26, 2013 in colonoscopy, family history, genetic research, medical history, Uncategorized by Ami McKay

This Week in Tweets

This Week in Tweets

Introducing…”This Week in Tweets.”

Occasionally I find a tweet (or two or three or more) in my Twitter stream that I feel merits a discussion that’s longer than 140 characters. From time to time I’ll round them up (along with my thoughts) and share them on Mutant Me. Welcome to the first edition of TWITs!

Ever find the statistics for CRC (and related cancer) risk in Lynchies to be overwhelming and difficult to understand? I discovered this excellent resource while exploring tweets from Kintalk.org. “Cancer Risks in Lynch Syndrome” lays everything out on the page in a tidy set of statistics organized by mutation, cancer type, gender (where applicable,) and age. AND, as an added bonus, they list the most common symptoms of colorectal, endometrial (uterine) and ovarian cancers at the end of the report. Vital information in a simple format. Thank you Kintalk! (Oh, and follow the link at the bottom of that page to “Managing Lynch Syndrome.” It’s not to be missed.)

Stop Colon Cancer Now has put together a helpful Myths vs. Facts list for colon cancer. A few of the myths were new (and surprising) to me… “colon cancer is a disease that only effects Caucasian males” and “all methods for colon cancer screening are equally effective,” while others were myths I’ve heard far too often, such as, “a polyp means cancer,” and “if I have colon cancer it means I’m dying.” There are eleven myths in all, and they’re disproved/addressed with straightforward answers. If you’re more of a visual learner, then here’s a nifty video presentation of the myths and facts. Five and a half minutes sums it all up, and it’s easily shareable too.

Those of you not in Canada may not be familiar with the CBC Radio show White Coat Black Art hosted by Dr. Brian Goldman. The weekly program covers a diverse range of topics and aims to “demystify medicine.” I’ve listened to it for years and was especially interested in the episode that aired November 15th, since it dealt with the ways in which celebrities approach illness when it comes to their very public lives. While the program didn’t deal with Lynch Syndrome, it did take a very human and discerning look at  the way celebrities talk about illness. Dr. Goldman interviewed Dr. Michele Berman and Dr. Mark Boguski, the husband and wife team behind “Celebrity Diagnosis” a web site that not only reports on celebrity illness in the news, but goes a step further to bring awareness and information about those illnesses to the general public.

Their work reminded me of earlier this year when Angelina Jolie published her now famous op-ed “My Medical Choice” in the New York Times in which she wrote about her decision to undergo a double mastectomy based on her discovery that she carried the BRCA1 mutation. That opinion piece and the public discussions that surrounded it, prompted me to go back and take a closer look at my own genetic testing results and my risk for endometrial cancer. (I’ll write more about what came of that re-evaluation in the days to come.)

In honor of the holiday spirit and the fostering of family ties, I’m posting the above tweet. I really appreciated Michelle Healy’s piece Talking Turkey about Health in USA Today encouraging people to take the advice of Surgeon General Boris Lushniak this holiday season. “Eat well, but do so in moderation. Take a brisk walk after dinner to burn off some extra calories. And before the day is over, spend time with your assembled family members and discuss the diseases and conditions that make up your family health history. Sharing that information can improve and possibly save lives.”

The article even includes a list of first steps to take in gathering and recording a family medical history, as well as links to forms that will help you organize your data. Awesome!If you’ve read my first blog post, Daughter of Family G, you’ll know that in my family’s case, keeping track of our medical histories has, without a doubt, saved and enriched many lives.

Happy Holidays to all!

 

Daughter of Family G

November 14, 2013 in family history, genetic research, medical history by Ami McKay

dna

dna

In 1895 Pauline Gross, a seamstress in Michigan confided in Dr. Aldred Warthin, “I’m healthy now, but I fully expect to die an early death.” Warthin, a pathologist at the University of Michigan took her words to heart. Rather than dismiss her confession as the worried notions of a fretful young woman, he chose to see her prediction as one that was based upon the astute observation of her family’s medical history. Far too many members of Pauline’s family had died from stomach, colon and endometrial cancers. The seamstress was only doing what she did best, minding the details.

While her prediction sadly came true (she died of cancer at an early age,) Pauline could not have known how far her conversation with Dr. Warthin would reach into the future. Through the years her words would be carried by members of her family and medical researchers alike, to one day become an important part of the history of genetic testing.

I’m proud to be a part of Pauline’s family tree and a member of the group Dr. Warthin would name in his research, “Family G.” Research that would one day fall into the hands of Dr. Henry T. Lynch in his search to assemble the pieces of the genetic puzzle known as HNPCC, or Lynch Syndrome.

Between 2000 and 2002, I wrote and produced a radio documentary for the CBC called Daughter of Family G. The piece recorded the path I took in making the decision to undergo genetic testing. So much has happened since then. I never could have imagined that I’d have traveled so far in such little time, both physically and emotionally. Peering into my DNA changed my life.

As you might imagine, it caused me to take an immediate inventory of my health. I became vigilant about making doctor’s appointments and setting up annual screenings. But the results also infused my life with a curious sort of fearlessness. I’d watched my mother battle colon cancer and wondered where her strength and courage had come from. Finding out that there’s an enormous potential for a battle of my own one day, I decided to tap into that vein of strength sooner rather than later. While I try not to feel that cancer is inevitable, I do feel that putting things off is no longer an option. This goes for everything in my life, especially my writing.

Mathilde Gross Wheeler

Mathilde Gross Wheeler

That’s my great-grandmother, “Tilly” in her wedding dress – a dress that she and her sister, Pauline fashioned together before Pauline died. They were part of a vibrant, well-known trio that also included another sister who was a milliner. Their skills as seamstresses were often in demand and that’s how Pauline came to know Dr. Aldred Warthin. He respected her artistry and her intelligence, and she felt compelled to confide in him her concerns about her family’s medical history and her fate.
Whenever I think of hesitation, of saving my imagination and concerns for another day, I think of Pauline.
Share yourself – your soul, your hopes, your dreams – it can change lives and possibly the future.

I hope you’ll listen to the first part of my journey in the podcast Daughter of Family G


Read Dr. Lynch’s 2010 account of the history of Lynch Syndrome (from Pauline’s conversation with Dr. Warthin, to contemporary findings) in Historical Aspects of Lynch Syndrome.