All Photos Courtesy of Mary Kyle
Spend a little while with Mary Kyle and you'll quickly become aware that she has been a powerhouse for some time.
"Even though I worked full time as a project manager in high tech, I was playing in the house band for several western swing bands and in the house band for several 'opry' houses throughout Texas. I loved it," Mary told me in an interview.
She was raising her children, and had her first grandchild to sweeten things even more.
Mary was living the dream.
In her thirties though, she began to experience some unusual problems. She was falling down several times a day and felt like she had a permanent flu. Her sense of balance deteriorated and one leg would drag a bit in hot weather which, she said, in Texas is all the time.
She went for tests but they always came back clear. She began to think that the overwhelming fatigue was just due to having so much going on in her life.
Mary’s doctor called her a hypochondriac. Eventually he refused to see her any longer since none of the test results backed up her list of symptoms.
Multiple Sclerosis: Chronic, Life-altering
It took more than 10 years for Mary to get a diagnosis of multiple sclerosis, and that didn't happen until she'd almost completely lost the vision in her left eye.
Mary was dealing with a serious life-altering disease but many of the people she knew just didn't comprehend what she was going through because she looked fine. MS is an invisible chronic disease that brings with it the added insult of not being believed by casual — and sometimes not-so-casual — observers.
Mary was often so ill that she kept a pillow and blanket under her desk in her office. She gave herself steroids by IV to get through flare-ups when she was at work.
Despite all the challenges she faced, Mary was determined that she would not be defined by her illness.
"I refused to view myself as 'disabled.' I made lots of accommodations to the illness. I gave up mowing the yard in the summer (easy) and cut back from 20 gigs a month to one gig a week (not so easy). But, I decided it was better to get to play a little bit for years and years rather than use all my energy up and never play again," Mary said.
Mary learned to manage her energy and her health. She learned to plan activities so she could still do the important things, building in necessary recovery time before the next activity.
Meeting Breast Cancer Head-on
On top of all the health complications from MS, on February 28, 2013, Mary was diagnosed with breast cancer. You can read her journal that documents her experiences here.
"The cancer is truly the most profound experience of my life. About Thanksgiving, my husband found a small lump — no pain — nothing unusual about it (please do tell ladies the importance of self-checking)," Mary said.
She'd had no pain, and her doctor said it didn't feel like a cancer lump. If things had stopped there Mary's story could have taken a very bleak and different turn. Fortunately, her doctor sent her for a mammogram anyway and she came face to face with breast cancer.
"Just four little words ... 'you have breast cancer' ... four little words that change your life forever. I would love to tell you that I was fine with the diagnosis but the truth is that there is a reason I have a red head's soul. I was pretty mad at first — and devastated,” Mary said.
“I already had MS and I thought it was just really unfair. Plus, I didn't look sick. I didn't feel sick. It just seemed like if I were facing something as terrible as cancer that my body would have given me some hint. It didn't. It took me about three days to process the news and move past my anger and grief and get down to planning how I would deal with it."
Pulling Out All the Stops
Mary went through 22 weeks of chemo. She opted for a double mastectomy because though she only had cancer in one breast, her oncologist told her that her family history, along with other factors, raised her risk for cancer in the other breast to 90 percent. She had reconstructive surgery afterward.
Mary had her ovaries removed because her doctor said that in her case, the BRCA1 gene mutation also meant she had a 70 percent risk for ovarian cancer.
She took part in a clinical trial in which her white blood cell count was brought to zero twice. Once it nearly killed her.
Even though Mary was so exhausted that she more than once fell asleep on the bathroom floor because she was just too sick to make it to bed, she continued to work full time.
Mary's way of coping with things is by learning about them. "By the time I saw the oncologist three weeks later, I'd read the National Comprehensive Cancer Network's NCCN Guidelines for Physicians four times!" she said.
Mary learned two important things amidst all her research:
- Not all breast cancer is the same.
- She had the kind you don't want to have.
Hers was a very rare, hereditary breast cancer. Only 5-10 percent of all breast cancers are this type. Mary was told that 85 percent of the women who get this cancer die within two years.
Mary hadn't known that she carried the BRCA1 gene mutation. Neither her mother nor grandmother had had breast cancer.
This diagnosis changed her life dramatically. Nothing looked the same anymore.
How was she to carry on?
Within a matter of days, Mary found herself moving through a series of crossroads. Fortunately, she had already developed a strong, positive foundation of beliefs in her life which she'd been building on for years.
Mary told me she made several choices that would define how she would live with her diagnosis:
1) She chose to live.
"Even as I made that decision, I knew that the chances of living very long were slim. But, I was alive today and I determined to live each moment fully and completely whether I had one day or another 50 years. Remembering what I believed about life was key during this time."
2) She chose to surround herself only with positive energy and positive people.
"If you're in a fight for your life, you just don't have time for those who have their pet thunderstorms on a leash. Life was too precious to waste one moment living in a storm cloud of someone else's negativity. I know that sounds harsh but for me, negativity brought me down too much and left me too little energy to deal with what I was facing."
3) She chose to be open to every-day miracles.
"I found that if you look, life is still filled with every-day miracles if you only open your eyes. I chose to keep my heart open to those opportunities. When your heart is open, so are your eyes and you see the wonder of life everywhere."
4) She surrounded herself with symbols.
"I chose to surround myself with symbols of things that connected me to my family, my faith, hope and life. These symbols gave me comfort and hope during the long days ahead," Mary said.
"For example, a 94-year-old woman at my church made me a bright yellow prayer shawl. I carried it to every chemo, every doctor's appointment, every surgery. Each time I saw it, touched it, I was reminded of the love that went into the making and in my mind, I felt surrounded by that love."
Mary also carried around a brass good luck elephant that belonged to her husband’s grandmother. Her husband’s mother and sister gave her that as well as other little items.
“They kept me connected to hope and the 'real' world outside the chemo lab," she said.
5) She wrote and painted.
"I wrote every day. I also added my art to my journaling. I took a travel-set of water colors to chemo and would paint the other patients, or my nurses or myself. Or, the clouds outside the window," Mary told me.
"Coloring is good for you. So is writing. The act of creating helped me keep focused on the beauty of living and sometimes, enabled me to express that which cannot be easily expressed to others."
6) She had a mantra.
"Choose something — a mantra, a power word, a positive thought — that means something to you. For me, it was Psalm 91, the Soldier's Psalm. I found it particularly appropriate since this was a battle for life."
7) She chose to forgive those who shut her out.
"One of the most surprising things about a life-threatening diagnosis is the reaction of others. Some of the people who you think will be there and have your back are suddenly gone from the radar and not even GPS can locate them. The isolation from those you thought had your back can be hurtful," Mary said.
"I learned to let it go. They were hurting too and dealing with it the only way they knew how. Choosing to be angry at them would only give me a cancer of the spirit to go with the one in my body."
8) She chose to learn to receive.
"I've always been a giver. It was hard to learn to allow others to do for me. One of the hardest things to do was to let go of my self-image as Superwoman and allow someone else to cook me a meal, sweep my floor, or run my errands. It's okay."
9) She visualized the goal.
"One of the most powerful tools for me was keeping my eye on the goal. I set mini-goals all throughout the process.
"A great tool was my chemo basket. A friend gave me a basket with 22 presents in it — one for each chemo day. Every week, I came home and got to open a present after chemo ... and watch the basket get smaller and smaller and smaller!"
10) She reminded herself that she is mind, body and spirit.
"It was important for me to remember that we are mind, body and spirit. Only my body was sick. The rest of me was well so I lived as if I was well. And two-thirds of me was well!"
Celebration:A Courageous Choice
Mary lives with a fierce courage, determined to celebrate life and try new things for as long as she is able. Only a month after her mastectomy, she went for a flight on a 1939 open-air biplane. She'd been afraid of heights but she observed, "After cancer, what's a little trip in the sky?"
What is the state of Mary's health two years after her diagnosis?
"My neurologist told me that it was his belief that the chemo had reset my immune system. I am in complete remission. I'm off all disease-modifying meds for MS for the first time in 15 years and I feel healthier than I've felt in 20 years," Mary told me.
"They'll never call it a 'cure' but I've gone from being trapped like a rat inside the house in the summer to riding my bike 10-15 miles a day last summer - in full Texas summer heat! I never could have even dared think about doing that once as it would have caused a flare-up."
The Love and Protection of a Good Man — Priceless
In October, 2014, Mary and her husband Cotton Inks took part in a Bike MS event. They wore pink ribbon jerseys even though the event was not for breast cancer because Mary said, "I would never have had the 'cure' for MS without the cancer."
"My husband is not a cyclist and bike riding isn't his thing but he matched me stroke for stroke and even bought me a new bike for the event training. Nothing says love like a man in pink spandex!"
Cotton made a profound difference for Mary during the ordeal of her cancer treatment. She was put on the worst of the various chemo drugs, known as the Red Devil.
"Cotton never left my side during those last eight weeks of chemo and guarded me like a mother lion guards her cubs. My white blood cell count went to zero and my temp was 102. He took the chemo nurse to task," Mary told me.
"I nearly died. I might have if he had not been there to get the nurse's attention."
He stayed with Mary day and night in the chemo lab, and she knew she could depend on him.
"Cotton has loved me, supported me and encourages me to do all these crazy things — art, ballet folklorico, sculpting — currently learning classical guitar. He encourages me to live always," she said.
Light Shining Out of Darkness
Mary was already a special woman before breast cancer. Dealing with that disease, on top of the chronic challenge of MS, just provided the dark background which has made the light appear to shine more brightly.
At first, Mary thought her cancer diagnosis was the most terrible, evil thing to have ever become a part of her life. But now she doesn’t like to necessarily label it as good or bad.
"Without the cancer journey, I would not be healthy from the MS which was progressing. I'd be getting a little worse each year that passed,” Mary said.
“In art, there is something called negative space. It's the dark areas that seemingly don't mean much to the painting. But, if you take away the negative space, you lose the depth, the beauty of the painting. I chose to look at the cancer journey as a slice of negative space."
Multiple Sclerosis. Retrieved March 16, 2015. http://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/basics/definition/con-20026689
Breast Cancer. Retrieved March 16, 2015. http://www.cancer.org/cancer/breastcancer/index
What are BRCA1 and BRCA2? Retrieved March 16, 2015. http://www.cancer.gov/cancertopics/genetics/brca-fact-sheet
Write Breast. Retrieved March 16, 2015.
NCCN Guidelines for Physicians. Retrieved March 16, 2015. http://www.nccn.org
Visit Jody's website at http://www.ncubator.ca
Reviewed March 19, 2015
by Michele Blacksberg RN