The Phoenix Flight

Reflections of a Breast Cancer Survivor

Recently, I was delighted to hear from an old friend. In this very mobile world, we’d lost touch after layoffs took our lives in different directions and different cities. It had been two years since we’d last talked. Going through a bad breakup, Sylvie* reached out to me as she sought to reconnect with her roots and try to find a way to rebuild the fragile threads of her life.

“I just had to see you. I’ve followed you on Facebook and you’re just doing so many wonderful and amazing things. Your life is so full and rich…so joyful – so abundant. I want your life. I want to live like that. How did you make it happen?”

For a moment, I was taken aback. You want my life? And then I realized, Sylvie didn’t know. She didn’t know that shortly after our last conversation two years ago that I was diagnosed with triple negative breast cancer (TNBC), a very rare and aggressive form of hereditary breast cancer related to the BRCA1 gene mutation. Under-researched because of its rarity, TNBC has an 80 percent mortality rate within two years of diagnosis. I was 54 years old and the diagnosis was devastating. She didn’t know about 22 weeks of chemo, multiple surgeries, too long showers where a river of tears and prayers flowed, or the night angels kept vigil when chemo threatened to finish what TNBC started. Sylvie didn’t know about the journey that led me from where I was to who I am today.

How could she know? While I wrote about it extensively in my blog, I didn’t share this journey on social media. As strange as it may sound, the journey with TNBC was simply too precious to become merely another tweet in cyber-land. Fighting TNBC wasn’t just about hair loss and tears and chemo and sickness. The cancer journey was so much more and it wasn’t just my journey.

The journey was about the family and friends who walked beside me. It was about Betty Bowers, Lockhart’s own doorknob angel, who never let a week pass that she didn’t leave a small gift or word of encouragement on my doorstep. It was about my daughter, Rebekah, and the Little Green Church in Martindale who brought so much food that it filled three freezers and my husband and I didn’t cook a single meal for almost nine months. It was about prayer shawls made by a 97 year old woman that covered me with love and prayers through each procedure. It was about co-workers who never missed a beat and always had my back at work. It was about others who stood in the gap and prayed when I was too ill or simply weary and could no longer do so for myself. It was about letting go of things that had never really mattered in the first place and embracing that which was good and true and lovely. Most of all, the journey was about love. I can honestly say that because of my journey with TNBC, I understand the meaning of love in a way I never fully comprehended before.

Breast cancer was not my first health challenge. After years of mysterious falls and unexplained health issues, I was diagnosed with Multiple Sclerosis (MS), an incurable, chronic and progressively debilitating disease in 2000. I cried once and then made a decision not to live my life defined as a statistic but rather to live each moment as fully and richly as my health would allow. Early in the journey with breast cancer, I reaffirmed that decision. I made a choice – a choice for life – a choice that for whatever time I was granted, I would LIVE and live abundantly.

I was given a great gift. Despite the fact that man said “no”, God said “yes” and I experienced what doctor’s refer to as a “complete clinical response” to chemotherapy. My new name was Mary NED – no evidence of disease! My understanding from my physician was that a complete clinical response to chemotherapy was fairly uncommon. Given the state of the initial tumor and the initial prognosis, the outcome was nothing short of miraculous. But, the time for miracles wasn’t quite over. In December, 2013, I received another, most unexpected gift from the cancer journey – healing from multiple sclerosis. The very chemo that almost finished my journey reset my immune system and for the first time in 15 years, I found myself completely symptom free of MS. While it will never be called a “cure”, it’s thought the effects will be permanent.

Greek mythology tells of a long-lived bird called the phoenix which dies by fire and then is reborn to new life from the ashes. In October 2013, four weeks after a double-mastectomy and reconstruction, I wrapped my still-bald head in an aviator cap and gingerly climb aboard the wing of 1941 Steerman open air bi-plane. The flight was a birthday gift from dear friends to celebrate the fact that the journey with TNBC was ending and the rest of my life was just beginning. Me, the woman so afraid of heights that she can’t even climb a ladder without getting dizzy took the flight of the phoenix. The sun burned away all was and left only joy in its place. That day, I felt as if we’d touched the face of God.

Since the phoenix flight, I’ve danced in the rain with joy and made more than one joyful noise. I took drawing lessons and loved it so much that I followed up with oil painting lessons and discovered a latent talent I never knew I possessed. I now have an art studio in my home. I write more and worry less. I play music and direct a children’s choir. I learned to tool leather. I’ve been known to eat dessert first and sometimes drink champagne and each chocolate while taking bubble baths. Life’s all good. I have more dust bunnies but also more joy. I have less time for negativity and more time for love.

I’m training for the BikeMS Ride to the River event in October to raise money to find a cure for multiple sclerosis. It seems fitting that the BikeMS event falls during Breast Cancer Awareness Month. You see my sister and brother-in-law both have MS too. They can’t ride. But, because of the TNBC, I can ride for my sister, brother-in-law and all the others who can’t ride for themselves. On October 11 – 12, the Pink Panters and I will don pink ribbon jerseys and put our wheels down in celebration of life. I will be 56 on that Monday – another reason to celebrate. I am still here – and healthy!

Cancer challenges you not only physically, but emotionally and spiritually as well. It changes you in fundamental ways. Like the refiner’s fire, the cancer journey cleanses your life of that which is unnecessary, and leaves room only for that which is good and lovely and precious. Last year was a hard year – a challenging year. But, I don’t regret it. It was also a year of love and miracles. It created who I am today.

I’m glad Sylvie wants to give herself permission to live an abundant life. I’m glad that she’s going to take the phoenix flight now.
Live life fully so that at the end you’ll have no regrets for the things left undone. Live long, live well, live happy. The most important thing is to LIVE!

Mary Kyle is an artist, musician, health advocate, and freelance writer who makes her home in Lockhart, Texas. She was diagnosed with Triple Negative Breast Cancer in February, 2013. Today, she remains cancer free and symptom free from Multiple Sclerosis. To read more about her journey with breast cancer, visit www.writebreast.com or contact her at mary@marykyle.com.
© 2014. Mary Kyle.
*Name changed to protect privacy.

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Recycled Boobs

Today I’m going to answer the question that everyone wants to know but is afraid to ask. Don’t think I don’t know you’re curious! I see the looks! I hear the hesitancy in voices when they broach the subject of breast cancer. Everyone is curious but they’re afraid to ask lest they upset me – are these brand new little babies real or are they Memorex? And the answer…..drum roll please….. is neither! They’re RECYCLED!

Ha! Fooled you didn’t I? Not quite the answer you were expecting, was it? My new boobs are as real as they get, guaranteed to be 100% all natural ingredients home-grown right here in the great state of Texas. When it comes to going green, we know how to make it happen! After all, I’m from a long line of farmers and ranchers and we were concerned about recycling a LONG time before the environmentalists jumped on our bandwagon.

How can this be? Recycled boobs? Really? Yes! Absolutely! Recycled boobs!
Believe it or not, breast cancer isn’t a one-size fits all disease and depending on the size of the little beasty invading your body, women may have several options available to them when it comes to the surgical side of breast cancer treatment. Two of my girlfriends were able to opt for lumpectomies. That wasn’t an option for me and I knew I was facing a double mastectomy. I wanted reconstruction but wasn’t too thrilled with the idea of implants. After talking to several women and a couple of surgeons, I finally settled on a procedure called a diep flap.

While not as common as some breast reconstruction procedures, diep flaps are becoming more popular. Many women (like me) want breast mounds but aren’t too thrilled at the prospect of implants. Without going into all the details, a diep flap procedure is essentially a tummy tuck where the fat is used to rebuild the breast mounds and the extra skin is used for the skin grafts on the breast.

Diep flaps are long procedures. In my case, I was in the OR for about 9 hours. First, my general surgeon came in and performed the actual mastectomy and removed the offending breast tissue. I don’t know if it’s the same for every woman but I’m pretty small busted and the only scarring I have on the breasts are round circles where the nipples used to be. The scar reminds me a great deal of the round cookie cutter my grandmother used to use when making biscuits. I have visions of Dr. Markus with a big cookie cutter press and doing a push and twist in one motion to make the cut!

Once the actual mastectomy was over, my plastic surgeon and his surgical staff arrived liked tactical strike team and got down to some serious rebuilding. An incision was made across my lower abdomen from hip bone to hip bone. Tissue from this area was used to rebuild the breast mound. New blood vessels were grafted into the breast mound so this transplanted fat will take root and “grow” (without blood supply, the transplanted fat would reabsorb into the body). Extra skin from the stomach was grafted onto the breast mound in the round cookie cutter incision.

No abdominal muscle is removed in a diep flap but the first time I got up it was an experience! The hospital had a great physical therapist that came around each day to teach me how to get up and down and maneuver on my own. I felt pretty comfortable by the time I went home that I would be able to manage. I borrowed a walker and used it quite a bit the first week I was at home. It helped quite a bit with getting up and down that first couple of days.

I did come home with drain tubes – both in the hips and the breasts. A friend gave me a terry cloth belt that had pouches built in to keep the drain tubes organized. Also, Cheri Mathews – a 12-year breast cancer survivor – makes a great shirt with pockets built in specifically designed for breast cancer recovery patients. (See more about her products at http://www.healincomfort.com/).

A lot of people ask me if it hurt. Well, duh! I just had some really intense surgery and there was some pain involved. But, I can honestly say that I was really surprised by how little pain I felt. I thought it would be pretty terrible but my breasts had almost no pain at all and what little pain I had was easily controlled by the meds they sent me home with. I was given some type of injection in the area of the stomach incision which lasted about three days. By then, I was up walking and moving around. I think I quit taking pain meds at home within a few days except at night.

The end result of all this? A flatter stomach and very natural looking breasts! The diep flap was a lot of up front work but I’m really pleased with the end result. I woke up with breast mounds which really important to me and didn’t have to deal with expanders for implants. This worked!

So, now you know. My breasts are the ultimate in going green and recycling. One hundred percent guaranteed recycled material!

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If you know someone facing a mastectomy and they want more info on the diep flap procedure, visit Dr. Ned Snyder’s Breast and Body Center of Austin for more information.

© 2014. Mary Kyle. All rights reserved.

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MIA – Again!

I know! I know! I have been missing in action again for a number of weeks. Please forgive and rest assured that I have been duly chastised for not writing sooner. I can only plead an overwhelming desire for SLEEP!!!

The truth of the matter is that my super-woman cape has become just a tad bit tattered and frayed over the past year. Twenty-two weeks of chemo…. No problem! (Well, maybe a few little problems but we won’t go there right now!) Double-mastectomy and reconstruction…. Piece of cake! (Honestly, that was E-A-S-Y after the Red Devil). So, imagine my surprise when the simplest procedure of all – this last surgery – was the puzzle piece by which my system finally cried uncle and superwoman temporarily hung up the cape and left the leaping of tall buildings and saving starving children in Africa to someone else.

So, you might ask, what finally caused a system wide shut down that even Microsoft would be proud of? Well, it was a simple oophorectomy, that is, a surgical removal of the ovaries. (And no, I can’t pronounce oophorectomy either! The pronunciation is a mystery!) Because I was positive for the BRCA 1 gene mutation, and because I’d already had breast cancer, the risk of ovarian cancer was 70%. As much as I love those folks at Texas Oncology, I really would rather see them over a glass of frozen frothiness with a little salt and lime on the side. The decision to have the ovaries removed was really a no brainer in my case. As soon as the doctors gave the green light from the mastectomy and reconstruction, we had this little baby scheduled.

Since I’m a project manager by training, I really love efficiency and cutting through to the critical path of the matter and was lucky enough that after the oophorectomy, my plastic surgeon came in and did a little revision work on the original surgery and then also gave me a brand new set of nipples! (You should have seen me wearing those little nipple boobie bumpers around the house to protect them for three weeks! Even more funny was my engineer husband manufacturing more for when the supply from the hospital gave out! He’s so clever!) So, while a day surgery, it was a 3-for-1 session! Talk about a time saver! Yes!

I had a personal goal of trying to complete all the “work” of cancer treatment by the first of the year. I’ve given a year of my life to treating and kicking this bad boy called the Big C’s butt and frankly, Cotton and I are ready for a different adventure…preferably one without quite so many white lab coats and vampires involved. As a result, everything has been a push. We did the mastectomy on the earliest date they would give me the green light after the end of chemo (my hair was still falling out when I had surgery if that puts it in perspective) and then moved on to this surgery as soon as we had a “go” from the doctors. My sick leave is up so I was back at work full time the next day (thank God I work from home and didn’t have a commute!) and I admit it, I just got tired. But, as Wendy would say, stick a fork in me I’m done! And, bit by bit, day by day, I’m getting my energy back and promise it won’t be so long before I post again.

PS… Isn’t it great that the copyright notice says 2014? I made it! Yeah!

© 2014. Mary Kyle. All rights reserved.

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The Story of the Christmas Manger

Dear Peeps…. Things are so busy this year and of course, my last surgery is tomorrow so don’t know when I’ll write again this month. I do however, want to share with you one of my Christmas stories. The Post-Register published it last year in their Christmas edition. I wish each of you much joy and blessings this Christmas season.

The Story of the Christmas Manger
By Mary Kyle
© 2012
Once, so long ago that it almost seems like the remnant of a half-forgotten dream, I was a tree among trees. Strong and powerful, my branches were the first each day to receive the sun’s morning blessing and the kiss of the moon goodnight. I gloried in my magnificence and proudly spread my branches giving shelter and lending shade to many a weary traveler. For more years than I can remember, families came to take their meals beneath my cool leaves and daring children challenged one another to see who could climb the highest as they tried to touch the sky. Of course, many lovers also sought me out and I proudly bore the scars of their declarations of love.

It goes without saying that I had many saplings, all of whom also grew into mighty, strong cedar trees. It was a fine, fine life. I loved the open air – the breezes – and the hands of those who touched me in love and gratitude for the shelter I provided. If only it could have lasted forever. Alas, all things come to an end and one night, there was a most tumultuous and fearful storm. Other trees trembled before its fury and I alone stood undefeated – that is, I stood until the fury unleashed its most dreadful weapon and felled me with a fire bolt from heaven. While some memories live only in my dreams, I can still feel the flames coursing through my branches as they burned me to my very roots and splintered me into more pieces than could be counted.

How had this happened? One moment, I had been mighty and proud – and useful. Yet, with the touch of a single lightning bolt, my life as a tree ended and I was suddenly nothing more than rubble and ashes. I cried out to my friends and saplings but received no comfort. They were so afraid of the fire that they were too busy putting as much distance between their branches and the poor smoldering heap that used to be me as possible to provide comfort. When they finally spoke, it was not words I longed to hear.

“Surely, you must have been the most wicked of all trees to deserve such a fate,” their branches whispered as they struggled themselves to understand. I understood their fear. After all, if wickedness was not the cause of my misfortune, then what was and who might be next?

I could not blame them for how they felt. I wondered the same. What had I not done? Had I not given shelter to all who sought rest beneath my branches? Had I not kept the secrets of the many lovers who sought me out? Had I not kept the children who dared to climb my branches to touch the sky safe and never once let one of them fall? I couldn’t understand it then and long since gave up wondering if perhaps my friends had been right.

As I lay there in shock, the remnant of me smoldering away, a kindly man who kissed his first sweetheart beneath my branches rescued parts of me from the embers. Some of my smaller branches were used for firewood in the ovens. It hurt to see me burn away but felt good to see their thankful faces as they ate warm bread in the evenings. Some of my smaller limbs were carved into bowls and cups for use by the family. It made me happy to know that I could still be useful and serve them. The man fashioned the biggest part of me that survived into a box. Each evening, he worked for hours smoothing my wood with a plane and rubbing me with oil until my red cedar heart gleamed.

I was given to the daughter of the family – a kind girl with merry brown eyes and a ready smile. She called me her treasure box and filled me with sheets and linens, handmade lace, dried flowers, and other things that bring pleasure to a young girl’s heart. Each time she opened me, she’d run her hands lovingly over my wood and thank me for keeping her treasures safe while she whispered her most secret dreams to me. I felt pride knowing that while I was no longer a tree, I was still beautiful and so loved by my mistress.

But, that was long, long ago. The young girl grew up and as the young do, married and we moved far away. For many years, I was loved and cherished and served my mistress well. But, she grew old and eventually died. Her children cared for me for a time, remembering her stories of how her father saved me from the fire and lovingly made me to hold her treasures. But, eventually they passed away too and no one was left to remember her stories of how I came to be. I was sold many times and my new masters didn’t care for me. My wood lost its gleam. I because rough and discolored and finally simply broke beyond repair. I was thrown out for scrap but the owner of this inn found me and fashioned me into a manger – a trough – to hold hay and oats to feed the animals of the travelers who stopped at his inn.

There are times when I still remember springtime on the hillside where I was first a sapling but I’ve learned it does no good to remember what I was – what I am now is a simple manager and that’s not likely to change. I’ve often wondered if I wouldn’t have been better off if the fire had consumed me completely that night so long ago but I can’t change that either so here I am and here I’ll stay until I finally become firewood. I’m ready for the change.

And so, this is how I came to be here in Bethlehem, in a stable – which is really little more than a cave – living out my last days as a feed trough. The animals, understandably, are generally quite hungry when they are brought to the stable so I am near the opening and have a clear picture of all that goes on in the stable, although there is seldom anything of interest that occurs. No, little happens here – just the daily routine of hay and oats, and feeding donkeys, mules, and the occasional war horse. I still see a few lovers’ trysts but frankly, the stable is so dark, and damp, and well, smelly, that generally the only people who come here are those that come to tend the animals. It was because of this that I noticed them right away – humans in a place where humans shouldn’t be.

It was just a man and very young woman – hardly more than a girl – along with a few very tired donkeys and one ungrateful pack mule with a bad attitude. Why in the world they were staying here in this damp stable was beyond me. Of course, the town was full due to the census. Even here in the stables we knew of the order requiring everyone to return to the city of their birth to register for the census. Perhaps the inn was full? Still, I couldn’t imagine them wanting to stay in this dark place where there was no light when they could have simply camped outside. Why, if I were still a tree, I myself would have given them shelter beneath my branches for the night but all I could offer them now was my service as a feed bowl for their animals.

As a low moan escaped the girl’s lips, I suddenly understood why they’d sought shelter in this most undesirable and unlikely of places. I hadn’t noticed before because of the dark but the woman – the man called her Mary– looked like my mistress did when she gave birth to her children. Her face was white and pinched with pain and fatigue. She was gripping the mane of the donkey and doubled-over her swollen belly. She was going to have a child! In this place! A baby shouldn’t be born in a place like this. Even a tree (or a glorified feed trough) knew that. The inn was must be full or the innkeeper would have never put them out here.

The innkeeper came and helped the man, called Joseph, unload the packs from the animals and then filled me with feed for the donkeys and mule while the man hurriedly helped Mary down and made her a bed in the straw in the corner. As I suspected, the inn was full and this stable was the only place available so Mary could have her baby in private. I suppose it was just my imagination but while the innkeeper was filling me with grain, I swear that Mary looked at me and saw me – not me as the wooden feed trough I was now but me as the proud sheltering tree I had once been. It was as if she wanted – no needed –something from me but what I didn’t yet know. It had been a long time since I’d been needed for anything truly useful and it was both exhilarating and terrifying.

While we waited for Mary’s baby to be born, her husband – Joseph – did something no one had done in a long time – he touched me with love. Joseph emptied the grain from my insides and scrubbed me until all the years of grain and food mash was washed away. He took a small plane from one of his pouches and rubbed it back and forth over my planks, smoothing away the roughness left by years of neglect. He rubbed me with a small amount of oil and for the first time in many years, my cedar heart felt the glimmer of a glow begin. Finally, he filled me with clean hay and covered it with thick clothes. It was then I understood what Mary wanted from me.

My last days would not be spent simply as a manager feeding animals. Part of it would be spent as a bed for Mary’s child. I, who had once been a mighty tree who’d protected and given shelter to many, would now shelter Mary’s baby. I, who was once a cedar box protecting all the treasures and dreams of my mistress, would provide protection for the baby that was about to be born.

What a gift I was given that night as I held the baby safe inside my old weather planks. My old cedar heart glowed red with the pleasure of serving again, and for a time, I was still the strong cedar of my youth. As I held that tiny baby inside my planks, suddenly everything made sense – the lightning bolt which had robbed me of my branches and stature, the treasure box I once was, and the manger that I was now. Everything in my journey had led me to this moment and purpose. I was happy for the first time in many years and the joy of sheltering that tiny baby stayed with me for the remainder of my days. Although I wouldn’t know it many years to come, the baby that I sheltered and protected that night was the greatest treasure of all, for His name was called Jesus.

8 And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. 9 An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. 10 But the angel said to them, “Do not be afraid. I bring you good news that will cause great joy for all the people. 11 Today in the town of David a Savior has been born to you; he is the Messiah, the Lord. 12 This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger.”
13 Suddenly a great company of the heavenly host appeared with the angel, praising God and saying,
14 “Glory to God in the highest heaven,
and on earth peace to those on whom his favor rests.”
15 When the angels had left them and gone into heaven, the shepherds said to one another, “Let’s go to Bethlehem and see this thing that has happened, which the Lord has told us about.”
16 So they hurried off and found Mary and Joseph, and the baby, who was lying in the manger. 17 When they had seen him, they spread the word concerning what had been told them about this child, 18 and all who heard it were amazed at what the shepherds said to them. 19 But Mary treasured up all these things and pondered them in her heart. 20 The shepherds returned, glorifying and praising God for all the things they had heard and seen, which were just as they had been told.
Luke 2: 8-10 NIV

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A Brief Update

To my dear friends and gentle readers…. I’m so sorry that I’ve been quiet this month. It’s been a world wind the past few weeks. I would love to say that I’m fully recovered and life has returned to normal. I would love to say that but unfortunately, that wouldn’t be true. I am still recovering from the effects of chemo and find that I tire much more easily post-chemo than before chemo. The fatigue is easily solved by a late afternoon nap but, even with MS, I’m not used to needing a “power” nap to make it through the day.

The tips of all my fingernails have come off – again from the chemo. I was pretty surprised by that. I knew that chemo pooled in your fingers/toes but no one mentioned that this might be a possibility so it was unexpected. For a while, I had the tips of my fingernails super-glued down as it seemed like every time I touched something, they just ripped further and further into the quick. You’ve never seen funny until you see super-glue on your nails! Talk about looking funny! I would post pictures and share but they’d gross you out! But, the nails are growing and the new and healthy nail bed is now about half-way out so in another 2-3 months, my nails should be back to normal! Because of playing the piano, I’ve never had long nails but can honestly say that I’m just going to be thrilled when I finally have nails of any sort! (Don’t ask me about my toenails, they’re just as bad but you can protect them better than fingernails!)

My hair is growing back! Yeah! It’s been four months since the end of chemo and it’s about a half inch long now. I know – that doesn’t seem like much yet but I didn’t lose all of my hair until six weeks after chemo!!! I finally ventured out to church this morning without my wig. It’s actually kind of interesting watching it grow. I’m definitely going to have my white spot back! That makes me happy – I loved that white streak in my hair! As far as the color goes, well, the verdict is out. It’s very dark, much darker in fact than what I had before, with a lot of grey mixed in. The one thing I can say is that it’s definitely not going to be red! My girlfriend Terri says it’s the color of “mink”. But, it sure does look grey to me!!! It is incredibly soft and I do like that and it shows all the signs of being curly, which I also like. It will be a fun adventure to see what the final version of my new hair looks like. Now, if it would only grow a little faster… I had no idea how much your hair kept you warm in the winter until I didn’t have any!

Tomorrow is the last of my surgeries. We have to leave the house at 4 a.m. to get there by 5. Yuk! But, then stick a fork in me girls and I’ll be done! I can’t wait.

More later…

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What Are You Thankful For?

“What are you thankful for?”

This was the question posed to us last Sunday at the Little Green Church. What am I thankful for? This year, the usual suspects – family, friends, job, the freedom to worship, being an American, good health, and so forth – feel like wholly inadequate responses. I’ve survived three breast biopsies, twenty-two weeks of chemo, an ER visit, one hospital stay for a hosed (as in ZERO) white blood count combined with 102 fever, isolation from family and friends as a result of treatment, nausea, hair loss, rashes on steroids, neuropathy, fatigue and so much more. I played Russian roulette with a trial drug and won.

My breasts are now recycled and put together from other body parts with a little more tweaking to do before they look “normal.” There have been multiple surgeries and scars now live on skin that was once untouched and clear and clean from such roadmaps. But, I am cancer free. One more surgery still waits in my future. But, I am cancer free. Three months after chemo, my hair is only a quarter of an inch long (and definitely no longer red) and some say I look like a middle aged “boy.” But, I am cancer free. I still have difficulty rolling over at night and sleeping on my stomach on these new and improved breasts. But, I am cancer free. I still tire much more easily than before and the effort of fully participating in today’s festivities will probably cost me a nap tomorrow. But, I am cancer free.

Do you hear these words? I am cancer free! Can you feel these words deep in your soul? I AM CANCER FREE! How do you articulate gratitude and thankfulness at being given the gift of your life? How do I answer the question: “What are you thankful for?”

I am thankful that when man said no, God said yes and healed me and gave me back my life. I am thankful for the countless number of family and friends who loved me, sustained me and encouraged me on this incredible journey. I am thankful for the doctors and nurses who were true healers and who were as thrilled about the outcome of treatment as I was. I am thankful for life. I am thankful for health.

I am cancer free.

I am thankful.

©2013. Mary Kyle. All rights reserved.

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Mary in Flight!

How does one celebrate the end of a very long battle with breast cancer? After all, for months cancer has dominated your life. In all likelihood, you’ve suffered through biopsies, surgeries, chemo, maybe radiation, and doctor’s visits too numerous to count. You’ve endured – and conquered – fatigue and nausea. Your body is battle scarred and your head is bald. You have chemo brain and have to make a list to remember what you’re supposed to be doing. You’ve been isolated from family and friends due to low white blood counts and maybe even had a few close calls as a result. BUT, YOU ARE CANCER FREE!!! So, how to you celebrate that? I don’t know how other women celebrate but thanks to a wonderful gift from two dear friends, this Texas gal took flight.

What a beauty!

What a beauty!

No, I didn’t suddenly decide to skydive or bungee jump. I didn’t go enroll in an extreme sports class and jump off a cliff in a birdman suit. I did however take a ride in a 1941 Steerman open air bi-plane. Yes, you heard me right. Me – you know the one afraid of heights – climbed right up into that airplane, put on a real aviator cap, and flew (well actually the pilot flew the plane) went off into the wild blue yonder. Well, maybe not “wild” but the sky was absolutely blue and it was a beautiful day for flying, especially in an open-air plane where there was nothing but you, the plane, the wind, and the sky.

I wish I could fully describe the experience but for once, words fail me. To say it was an amazing adventure is an understatement. I can only say that I now understand and appreciate why pilots love to fly. I felt as if I’d touched the face of God. It’s an experience that I’ll never forget.

In flight

In flight

A two thumbs up experience!

A two thumbs up experience!

During the flight something magical happened. I made a decision to donate the “bad” parts of the past eight months to the universe. As we flew, I let go of the pain, the worry, the fear, and the other negative things that often seek to overwhelm you when you have cancer. My spirit could almost see them as they floated away into the universe. As I left them behind, the plane turned to the sunlight and John asked me if I wanted to take the control stick. How appropriate. We turned to the sun – to light, to freedom from illness, to the future, and most of all to LIFE.

Live life fully so that at the end of it you’ll have no regrets for the things left undone. Live long, live well, live happy. The most important thing is to live!

©2013. Mary Kyle. All rights reserved.

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What is Love?

“What is love?” It was youth day at the Little Green Church and the children were in charge of the service. The task of delivering the sermon fell to ten year old Evan. He asked for the privilege and as we were to learn, he was more prepared than most adults for the task ahead.

“What is love?” Again, he asked the question and slowly the congregation began to raise their hands and share what they thought love meant.
Before cancer, answering this question was so easy. Love was holding my newborn daughter. Love was calling someone in the middle of the night and having them come with no questions asked. Love was being rocked by my grandmother. Love was singing to my grandmother during her final illness.

But, as so often happens when you’re on a journey of this kind – a life altering journey, a life changing journey – you find that your perspective has changed even on the simple things of love. One this journey called breast cancer I was given a rare and precious gift – the gift of knowing just how truly loved I am now. When I think of love now, I’m overwhelmed at the outpouring of love that showered upon me during this journey. If I shared all the ways to say I love you, I’d fill up more pages than I could write – or you could read – in a lifetime. Instead, I’ll leave you with a few thoughts of how I could have answered Evan’s question if only there had been the time.

“What is love?”
Love is Tommie and Lorraine, breast cancer survivors, who held me that first Sunday after I was diagnosed and let me cry and loved me until my wounded heart was healed.

Love is my sister-in-law, Jeanna, coming to the first day of chemo bearing angels, a good luck elephant belonging to my husband’s grandmother, and performing a real “cheer” (she’s a former cheerleader) to encourage me as I faced the unknown.

Love is Joan and Leon, dear friends who’d already walked this journey showing up the day we had the first appointment with the oncologist just to wait with us in the waiting room so we wouldn’t be alone. I prayed for angels to be with us that day as I was terrified. God sent them. They also changed her Herceptin treatments to coincide with my first chemo so they could be there with us that day. How can you be scared when you have cheerleaders in the wings?

Love is my husband, holding my hand and giving me strength so I wouldn’t break down and cry when I called my parents to tell them that their baby girl had cancer.

Love is Bird-of-Paradise flowers, sent all the way from Hawaii, from Jeanna, just to make me feel better after diagnosis.

Love is Penny who came from Colorado just to pray for me.

Love is a special mass that Buddy and Carolyn arranged to ask for healing.

Love is a yellow prayer shawl, crocheted by Mrs. Taylor (a 99 year old woman at the church) and blest by the congregation. It went with me to every biopsy, every procedure, every chemo, every surgery.

Love is Terri who carried me to biopsies, called constantly to check on me, bought face masks, made home remedies and teas to help with the nausea, and never went to the store without calling to see if we needed something.

Love is my daughter, Rebekah, who delivered homemade meals every month so that I never had to cook during the 22 weeks of chemo.

Love is Betty, the door knob angel, who left notes, flowers, cards, brownies and so much more hanging on the door knob throughout this journey.

Love is an email every Wednesday night from my mother-in-law to tell me she’d be thinking of me the next day.

Love is a card that arrived from Linda F. every week, even when she was on vacation, during this journey.

Love is a text message from Linda L. every Thursday morning during chemo letting me know she was there with me in spirit.

Love is the phone calls (always timely) from my mother and father, my sister, and my brothers. God bless them as I needed to hear about life outside of Texas oncology.

Love is a visit from Mark and Darlene who drove hours to see me when they had so much else to do.

Love is a red wig from my best friend in high school, Beth. Boy am I one good looking red head!

Love is a charm bracelet with each charm commemorating some event on this journey.

Love is my husband, telling me I’m beautiful when I was so sick I couldn’t get up off the bathroom floor. Love is him kissing my bald head and looking at me through those beautiful rose-colored glasses he must be wearing.

Love is Susan – her prayers, her tears, her letters, her intercession, angels and a journey necklace to represent all we’ve been through together over the last 34 years.

Love is my church, who filled two freezers with wonderful meals after surgery.

Love is a massage from Sarah.

Love is my oncology nurse, Berta, who cared for me all those months. There is a special place in heaven for people like her.

Love is Kimble who organized the North Carolina prayer warriors and then backed me up at work during this journey so I never had to worry.

Love is flowers from my MamMaw (who has long since passed on), sent by my friend Dorothy who said God told her to bring them. Dorothy is 86 years and a total love.

Love is grandchildren, who took it all in stride and never looked at me differently despite the changes in my body which kept me from doing many things we wanted to do.

Love is a plane ride in a 1941 Steerman biplane – a gift from Terri and Dana – to celebrate the end of one journey and the beginning of my new, cancer free life.

©2013. Mary Kyle. All rights reserved.

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Hereditary Breast Cancer: A Personal Perspective on the BRCA Gene Mutation

Special to the Post-Register; published by the Lockhart on Thursday, October 10, 2013

“You have breast cancer.” Nothing prepares you to hear those words and yet, on February 28, 2013, I listened with disbelief as my surgeon spoke four small words that would change my life forever. Unfortunately, the hard news didn’t stop with those words. Not only did I have cancer, but I had a very rare – and aggressive – form of breast cancer, triple negative breast cancer, which was almost always hereditary.

Despite multiple mammograms, ultrasounds and biopsies, until the moment I heard those four words, the concept that I might actually have breast cancer was inconceivable. I simply couldn’t believe or accept that the lump would be anything other than benign. Eighty percent of all breast biopsies are negative for cancer so the odds were in my favor. I wasn’t worried. To say the diagnosis was shocking would be an understatement – it was devastating. But, the diagnosis that I had triple negative breast cancer, a hereditary form of breast cancer was frankly confusing. After all, my mother and her sisters didn’t have breast cancer. Neither of my grandmothers had breast cancer. As far as I knew, there was no history of breast cancer in my family so how could I possibly have such a “bad” form of hereditary breast cancer?

My immediate concern after the initial diagnosis was what it meant for the other women in my family – my sister, my daughter, my granddaughters and my nieces. Triple negative breast cancer generally has a very poor prognosis and I was terrified for the rest of the “girls” in the family. Were they at risk? Would they also develop breast cancer? More importantly, where had this come from and how could we stop it? I love each of these women and it became a mission to determine how to protect them from becoming a Pink Ribbon Sister.

With no apparent genetic history of familial breast cancer, my doctors and I embarked on a genetic forensic hunt to get to the bottom of the mystery. The results were startling. A closer investigation of my family history revealed multiple instances of breast cancer – eight cases in all – which I’d previously known nothing about. Based on this new information, I elected to undergo genetic testing which confirmed the oncologist’s initial suspicions. I tested positive for the breast cancer gene 1, or BRCA 1, gene mutation. The BRCA1 gene mutation is a hereditary cancer gene mutation known to cause an increased risk in breast cancer and ovarian cancer.

Hereditary cancer gene mutations are passed from parent to child. If one parent has the BRCA1 or BRCA2 gene mutation, then each of their children has a 50 percent chance of inheriting the same gene mutation. Men can inherit the gene mutation as well as women and can pass the gene mutation on to their children. The presence of the BRCA1 or BRCA2 gene mutation does not mean that you will develop breast cancer but it does mean that you have a higher than normal risk of developing breast and certain other cancers during your lifetime. Often, these cancers develop at much younger ages than the general population. It’s not uncommon to see breast and ovarian cancer in persons younger than 50 years who have the BRCA1 or BRCA2 gene mutation.

According to the American Cancer Society, hereditary breast cancer accounts for 5 to 10 percent of all cases of breast cancer. While there are several types of hereditary gene mutations linked to an increased risk of breast cancer (such as ATM, TP53, CHEK2, PTEN, CDH1, and STK11 gene mutations), the most common cause of hereditary breast cancer are the BRCA1 and BRCA2 gene mutations. While the BRCA1/BRCA2 gene mutation is most common in persons of Ashkenazi – Eastern Europe – Jewish, Icelandic, Norwegian, Dutch, or Swedish descent, persons of any race or ethnicity may possess the gene mutation.

The BRCA1 and BRCA2 genes normally function to prevent cancer from developing by creating a protein that inhibits abnormal tumor cell growth cell. However, when a gene mutation occurs, this natural protection is lost resulting in a higher than normal risk of developing breast, ovarian, and other cancers. According to the National Cancer Institute, approximately 12 percent of women will develop breast cancer during their lifetime. In comparison, the rate of breast cancer in persons with a BRCA1/BRCA 2 gene mutation is much higher than the general population. Persons with the BRCA2 gene mutation have approximately a 45 percent chance of developing breast while persons with the BRCA1 gene mutation have a 55 – 65 percent chance of developing breast cancer. According to the American Cancer Society, the risk of breast cancer for those with the BRCA1 gene mutation may be as high as 80 percent depending on family history.

In addition to breast cancer, persons with the BRCA1/BRCA2 gene mutation are also at increased risk of ovarian cancer. Thirty-nine percent of women with the BRCA1 gene mutation develop ovarian cancer and 17 percent of BRCA2 positive women can expect to develop ovarian cancer before the age of 70 years. In comparison, only 1.4 percent of women in the general population develop ovarian cancer. The BRCA1 gene mutation also carries an increased risk of fallopian tube cancer and peritoneal cancer while the BRCA2 gene mutation causes an increased risk of cancers such as melanoma and stomach cancer. Men are not immune from the effects of the BRCA1/BRCA2 gene mutation. Men who carry the BRCA1 or BRCA2 gene mutation are at an increased risk of male breast cancer and prostate cancer. Both the BRCA1 and BRCA2 gene mutation carry an increased risk of pancreatic cancer.

Because I had already received a diagnosis of breast cancer, the decision to undergo genetic testing for the BRCA1/BRCA2 gene mutation was easy. I hoped that by knowing my BRCA status, other members of my family would be able to protect their health and avoid a future journey with cancer. However, the decision, particularly for persons who are healthy and cancer free, can be very difficult. The thought that you may be at a significantly increased risk of cancer can be scary and frankly, downright overwhelming. A genetic counselor can help you work through whether or not genetic testing is right for you and if so, what the results mean to you and your children, as well as the physical and psychological benefits and risks in determining your BRCA status.

From a purely personal perspective, knowing my BRCA status was important to put together a future treatment plan. Because I already have hereditary breast cancer, the likelihood of developing the same type of breast cancer in my “good” breast was approximately 90 percent and the risk of ovarian cancer about 70 percent. After evaluating the options, I elected to have a double-mastectomy to not only lessen the risk of reoccurrence in the “bad” breast but prevent a second cancer from forming in the good breast. I’m also planning to have my ovaries removed to avoid the possibility of developing ovarian cancer in the future. Knowing my BRCA status made these decisions easy.

For a person who is currently cancer free, knowing that you are BRCA1 or BRCA2 positive can help you develop a lifelong plan to manage and lessen your risk of developing breast or ovarian cancer. Physicians currently have numerous tools available to manage such risks including enhanced screening, chemoprevention, and prophylactic surgery.

• Enhanced screening: It’s generally recommended that women who are BRCA1 or BRCA2 positive undergo more frequent screenings for breast and ovarian cancer and that screenings begin at an earlier age than is recommended for women in the general population. The National Cancer Institute recommends mammograms and screenings in BRCA1/BRCA2 positive women begin as early as age 25. Other screenings, such as a breast MRI, may be recommended as well. There are no effective screenings for early detection of ovarian cancer but regular exams, blood tests and transvaginal ultrasounds may be recommended. Since there are other cancers associated with the BRCA gene mutations, your physical may recommend regular screenings for those cancers as well.

• Chemoprevention: Chemoprevention is a term applied to the use of certain agents used to prevent a cancer recurrence or to reduce the risk of developing a primary cancer. Chemoprevention may include substances such as vitamins as well as approved chemoprevention drugs. Currently, there are two chemoprevention drugs approved by the Food and Drug Administration (FDA) for the prevention of breast cancer: Tamoxifen and Raloxifene. Tamoxifen may reduce the risk of developing breast cancer in BRCA1/BRCA2 positive women. There is no separate research on the effectiveness of Raloxifene in reducing the risk of breast cancer in BRCA positive women. Birth control pills may lessen the risk of developing ovarian cancer.

• Prophylactic surgery: Angelina Jolie recently made headline news when she revealed that she underwent a prophylactic, or preventative, mastectomy to reduce her risk of developing breast cancer. Angelina Jolie lost her mother to ovarian cancer and recently lost an aunt to breast cancer. Jolie is also BRCA1 positive. Surgical removal of the breast and ovaries significantly reduces the overall risk of breast and ovarian cancer in women. There is currently no evidence on the effectiveness of prophylactic mastectomy in preventing male breast cancer in BRCA positive men.

As I write this article, my family is still processing what the BRCA1 gene mutation diagnosis means to them. One sibling has already tested positive for the BRCA1 gene mutation and is evaluating options to lessen the risk of developing BRCA related cancers. Other siblings are waiting on their test results. The diagnosis of hereditary breast cancer didn’t just happen to me – it happened to my whole family. Each of my siblings has a 50 percent chance of carrying the BRCA1 gene mutation as does my daughter. We were caught with our genetic pants down. We thought we knew our family history only to find a genetic skeleton hidden in the closet.

Benjamin Franklin is credited as saying “An ounce of prevention is worth a pound of cure.” In the case of hereditary breast cancer, this is certainly more than true. The “cure” has been a long, hard fought journey. I’ve had 22 weeks of chemo and twice nearly died when chemo took my white blood count to zero leaving me unable to fight any infection. Those were scary hospital stays. I just underwent a double-mastectomy and reconstruction surgery and still have at least more surgery ahead to complete reconstruction as well as more surgery to remove the remaining ovary. In all likelihood, I’ll also face 6-8 weeks of daily radiation. I’m still waiting on the decision from my doctor on whether or not radiation is required.

Despite that, I’ve been lucky – and blest. Unlike many hereditary breast cancers, we caught it early before it spread. The last pathology report indicates no evidence of disease in the sentinel node or lymph glands and no cancer cells present in the breast tissue removed during the mastectomy. This is truly wonderful, miraculous news. Not everyone is so fortunate and blest. If you’re at risk for hereditary breast and ovarian cancer, discuss your concerns with your physician or a genetic counselor to determine if genetic testing is right for you. The knowledge gained by knowing your BRCA status

Mary Kyle is a musician, health advocate, and freelance writer who makes her home in Lockhart, Texas. She was diagnosed with Triple Negative Breast Cancer in February, 2013. To read more about her journey with breast cancer, visit www.writebreast.com.

© 2013. Mary Kyle.

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Breast Cancer Awareness Month: A personal perspective

October is Breast Cancer Awareness Month. It seems as if pink ribbons are the fashion of the day and no matter where you go or what you do, you’re sure to find pink ribbons prominently displayed. In the spirit of spreading the word, social media is full of brightly colored posters promoting breast cancer awareness and education, all encouraging the reader to “Like” and “Share” the message with others. There are other posts as well – sadder posts. Posts encouraging us to never give up hope. Posts honoring “pink ribbon warriors” – those who fight and those who survived the pink ribbon battle, and those who didn’t.

I’ve always done what I considered my part during Breast Cancer Awareness Month. I’ve written articles, posted on social media, encouraged friends and family to get checked, and of course, performed a self-check. This year is different. This year, Breast Cancer Awareness Month is personal. I’ve spent the last eight months fighting – and winning – the pink ribbon battle. I’m no longer an interested bystander, I’m an active warrior – and survivor.

Breast cancer has challenged me mentally, physically and spiritually, often all at the same time, and challenged my faith and core beliefs. I’ve gone through 22 weeks of chemo, lost my hair, eyebrows, eyelashes, and haven’t had to shave my legs in six months (that part is actually a perk!). I had surgery to install a port, three breast biopsies, one emergency room visit for chemo induced neutropenia, and a separate hospital stay when they took my white blood count down to zero and I developed a 102 fever. I tested positive for the BRCA1 (breast cancer 1) gene mutation. As I write this, I’m recovering from a double-mastectomy and reconstruction. I still have another surgery on the horizon to remove my remaining ovary (necessary because of the BRCA1 gene mutation) and may also need 6-8 weeks of radiation. I’ll know about radiation next week. There have been nights when I was so sick from chemo that I fell asleep in the bathroom floor and my sweet husband had to get me up and put me to bed.

Breast cancer (particularly the treatment) is a hard journey but please understand that I’m not complaining or asking for sympathy. I view myself as a soldier engaged in a battle for life and this pink warrior princess chose life long ago. I share all this with you so that you understand breast cancer is hard, hard on the person with the disease and hard on those who love them. Breast cancer doesn’t happen in a vacuum. It happens to everyone – family, friends, co-workers, and especially the one diagnosed with this foreign invader which must be eradicated.

When I was first diagnosed, I became good friends with Dr. Google. In hindsight, that was probably a mistake. My form of cancer is fairly rare and the statistics were so poor that it scared me and caused many unnecessary tears. What Dr. Google didn’t – and couldn’t – tell me was that we’d caught my cancer early and that unlike most cases of triple negative breast cancer, mine hadn’t spread yet. Instead of a typically poor prognosis, my prognosis for a “cure” was actually positive. On July 3rd, my doctor could no longer find the tumor and pronounced me NED (No Evidence of Disease). On September 15th, my general surgeon shared with us that there was no evidence of cancer cells in the sentinel node or lymph glands and that no cancer, not even dead cancer cells, were found in the breast tissue which was removed as a part of the mastectomy. This was remarkable, outstanding news.

While there were many contributing factors to this miraculous outcome (including many prayers for which I thank God), early detection played a role. I’ve always been diligent about my woman’s annual and getting my mammograms on schedule. I didn’t neglect my checkup. My husband found my tumor three months before it was time for my annual mammogram. If he hadn’t found the tumor, if I hadn’t followed up with an early visit to my GYN, the final prognosis might have been much different from the cancer free reality of today.

As we focus this month on breast cancer, take a few minutes to focus on your own breast health. Pick a day and perform a self-check. Put a reminder on the calendar and perform a self-check on the same day every month. If you’re familiar with your own breasts, you’ll know immediately if something doesn’t feel “right.” If you have a spouse or significant other, have them check your breasts as well. I’ve read several articles indicating that most breast tumors are found by the spouse or partner. Chances are that they’re pretty familiar with what your breasts normally feel like so engage them in the process of performing a breast check. (Hmmm….that could be fun!) If you find something that doesn’t seem right, don’t wait for your annual to get it checked out. Go, pick up the phone, dial the GYN’s office, and schedule an appointment to get checked as soon as possible. Also, if your monthly self-exam is clean, don’t use it as an excuse to assume all is well and neglect your mammogram.

My prayer is that you and your family will be in the majority who are never touched directly by breast cancer. I pray that my all my girlfriends remain my sisters only and never become a pink ribbon sister. But, should breast cancer become a part of your journey, know that life is sweet and life is good despite breast cancer. Breast cancer is a journey, and a battle. But, not only can you survive the pink ribbon battle, but can – and will – thrive despite breast cancer.

©2013. Mary Kyle. All rights reserved.

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