Breast Cancer Is NOT a Pink Ribbon

Photo by David Jay - The Scar Project

Shortly after I had sent out the story about my surgery, one of my niece’s wrote, “Wow! Craziness. You, a cancer-fighting rock star!”

It was a huge compliment and I took it that way. But the reality is, I don’t want to be a cancer-fighting rock star. I don’t want to be a poster girl for breast cancer. I don’t want to have it, live with it, fight it or sometimes even write about it. It's just too hard. And there are many people, who are much more eloquent than I, that are waging tougher battles against this killing machine.

I feel like I have a mild case of the flu compared to their life-and-death struggles. But even a mild flu can turn into deadly pneumonia and my particular brand of 'flu' has yet to show the length of its fangs.

I’m not Bono! (I wish I were, but I’m not.) It’s not up to me to write anthems for people to rally around. There’s this very pretty pink ribbon out there already. It’s clean, it’s pristine, it’s safe. There are no eight-inch scars stitched across this ribbon, ripping it in half. There is no blood dripping off of the ends, forming pools on the ground. Millions are rallying around this symbol and that’s fine by me... 
Except that it’s not!

Breast Cancer is NOT a pink ribbon!

Photo by David Jay - The Scar Project

Cancer is having your breasts cut off – a jagged surgical scar forever separating sections of your chest.

Cancer is clumps of hair falling off your head - every time you shower and every time you delicately brush that beautiful, thick stuff you hardly remember existed.

Cancer is having your internal organs so hacked up there is very little left for you to live on.

Cancer is setting off Geiger counters at border stations and throwing up from all the destructive chemicals injected into your fragile body.

Cancer is a silent killer stalking each and every life-giving organ, through lymph and blood.

Cancer doesn’t play fair and cancer doesn’t care. It thrives on those screaming in pain and forces you to stare death in the face – day after day after day.

Cancer can feel like a curse. But it is also a great gift!

Cancer is also other people’s arms, holding you up, hugging you close even when it hurts.

Cancer is family and friends (and some people you hardly know) sending you cards, notes, flowers, emails, handmade gifts, books, food, anything they can just to encourage you.

Cancer is someone saying they love you when you feel most unlovable.

Cancer is your husband doing the dishes without complaining, frustration furrowing his brow as he watches you struggle with debilitating pain.

Cancer is friends travelling long distances just to be with you.

Cancer is a million prayers to Our Creator, asking Him to put right this wrong. 
Cancer is knowing He will work it all out for good in the end.

Cancer is feeling His presence so close, His light shining in the depths of a suffocating darkness no other light can penetrate.

Cancer is trusting, despite the unknown.

Cancer is telling God He can do anything to you, anything at all to your body, if it is ultimately helpful to even one other soul.

Cancer is the strength of those who love you - giving you the courage to face surgery, chemicals, and a forever changed life – things you could never face in your own strength.

Cancer is a heart of gratitude for all of these people and all of the undeserved love that overwhelms you each and every day.

Cancer is a battle you can’t possibly win on your own.

Cancer is like being a ring-bearer - the bearer of The One Ring - a millstone around your neck; sapping your energy, driving you mad. You know the only way to rid yourself of it is to destroy it. The trip, then, is to Mordor, to throw this Ring into the fires of Mt. Doom.

Frodo: I can’t do this Sam.

Sam: I know. It’s all wrong. By rights we shouldn’t even be here. But we are. It’s like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger, they were. And sometimes you didn’t want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it’s only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines it will shine out all the clearer. Those were the stories that stayed with you. They meant something, even if you were too small to understand why.

But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back, only they didn’t. They kept going because they were holding on to something.

Frodo: What are we holding on to, Sam?

Sam: That there’s some good in this world, Mr. Frodo...and that it’s worth fighting for.

The Mastectomy - Breast Cancer Part 2

I did not want to be a girl (try to imagine me stamping my little foot)! I felt that guys had so many advantages. I was really mad at God for creating me in the image of Eve.

As a kid, I wore undershirts just like my Dad, and I loved them. But then I hit 11, puberty reared its ugly head and Mom bought me a bra. I had ‘developed’ early and Mom said it was “high time” I started wearing this unmentionable undergarment.

You should have seen the explosion! I flung that thing into the far recesses of the kitchen, yelled at her, “I am NEVER, EVER going to wear THAT!” and burst into tears. I was definitely on the brink of puberty. My Mom, wisely, put the bra in my clothes drawer and left the subject alone. A few days later I took it out and tried it on. Wow! It looked great! I slept with it on that night and wouldn’t take it off for a week. Thus began my official transformation from a tom-boy into a young woman.

Tomorrow, I will be turning back the clock, in some ways. I am having a radical mastectomy. Wearing bras will never be the same again. I’m over the whole “wanting to be a guy,” thing and I’ve become really attached to these “two breasts, like twin fawns of a gazelle.” (Song of Songs.)

I don’t want my breast chopped off like a cut of beef. I don’t want a massive eight inch scar across my chest. I will do this because I need to but it’s not normal and it’s not a pretty sight.

I am trying to focus on the positives because losing one breast is a far better option than I thought I would have.

After the ultrasound showed “a suspicious lump” I did an Internet search to see what type of breast cancer matched up with my symptoms. This was not a good idea. Whenever I typed in “large tumor,” “bleeding from the nipple,” “tumor growth rate extremely rapid,” “bruising on the breast,” I kept getting Inflammatory Breast Cancer.

This is an aggressive, mostly lethal form of breast cancer that starts at Stage 3 – it has already spread through the body. I read the symptoms for every other type of cancer and they didn’t seem to match mine. I was terrified.

It was late at night and I went walking through the fields of stars that watch over our 40 acres. For the first time I cried, beseeching the Maker of the universe, the One who made me, to undo this wrong.

I went through the stages of death and came to acceptance in a matter of hours. I realized then, what a blessed life I had led. I am only 51 years old, but I have felt God’s favor on my life. With wonderful parents, an idyllic childhood, the best older brother ever (no, mine is better than yours!), friends I have had for decades, and new friendships that have found a deep place in my heart, I began smiling as memories washed over me in waves. Peter’s family has supported me, loved me and is as close to me as my own. I am full to overflowing with love – for others and for my Lord. I realized that I was ready to die.

With that peace and hundreds of people praying for me, I entered the day of x-rays, the bone scan, and abdominal ultrasound. I snuck a peek at the abdominal ultrasound when the technician was turned away and was sure I saw a black spot under my right breast. My heart fell. When I went to x-ray, and they said they wanted to do an extra set that hadn’t been booked, what was I supposed to think?

When my GP phoned with the results of all the tests the next day, I braced myself.

“How do they look?” I asked.

“Well, they look pretty good,” she said. “Your bone scan is clear and so is your abdominal ultrasound.”

“Really?” I couldn’t believe it! “What about the x-rays?”

She shuffled papers around, “Let’s see. Yup, they’re clear too.”

My hands were trembling. “Are you sure? Could you please look over all the tests again?”

She laughingly complied. They were no tumors present in any of the scans.

I hung up and whooped! It totally changed my world. I went from resignation to hope. There was a chance I could survive this.

The next week was my first meeting with our local oncologist. Since we moved to the country, we’re not near a Cancer Centre but this woman was fresh from Toronto and seemed to be sharp. I was hoping for a good meeting.

I had my biopsy the day before and it was tough. Since the tumor is so large the radiologist took eight samples when they usually only take one or two. That meant the tiny hole he repeatedly went into got bigger and wouldn’t stop bleeding...for two hours...and they wouldn’t let me leave the hospital. Lots of pain and lots of bandages.

But that was only a warm up for my meeting with the oncologist. The biopsy results weren’t in yet but that didn’t mean anything to her. The radiologist had found a tiny (2mm) tumor in one of my lymph nodes near my right breast. Nobody thought to tell me about this. She felt it was aggressive cancer and said if the biopsy supported this she recommending drastic treatment. Even though the other scans didn’t show any tumors in other parts of my body, cancer cells could possibly be circulating through the lymph. She would be treating it as if this were the case. Chemotherapy then would be the first course of treatment. She wanted to hit the cancer hard, fast and long (6 months). Surgery or other potential treatments would follow if I survived this. She didn’t seem to care about any other medical or health problems. It didn’t matter that I have CFS. It wouldn’t have mattered if I had MS or Lupus or any number of immune deficiency diseases. They don’t factor in to the treatment at all.

Discouragement. Anger. Fear. Frustration. This news demoralized me. I knew that I would never survive such a treatment plan. The look for doctors who would treat me based on the fact that I had an immune-deficiency disease began.

Then we received the pathology report back. I was so shocked I didn’t think I heard my GP right. Ductal Carcinoma in situ (DCIS). All eight biopsies had come back with this type of non-invasive cancer. I had the worst kind of DCIS mind you, but it still meant the cancer was supposed to be localized.

The next meeting with my oncologist was way better. She took the pathology report at face value and said the best plan now was to operate and then take a look at the whole tumor and some of the lymph nodes. If the cancer hasn’t spread, I have great chances for recovery. If it has, it means a difficult road ahead.

Surgery was scheduled for April 4^th. During the four-week wait we had another loss. Our dog of almost 17 years could not hang on any longer. Pokey was a real trooper, even in her last days. She wasn’t eating and could barely stand, but she struggled to her feet so she could go outside every time she needed to throw up or pee or poo. On her last day she somehow made it outside 10 times.

I have felt her loss sharply, at strange times. Pokey was always by my side when I was recovering from a CFS crash. She encouraged me to take short walks with her and was ready to go back when I had had enough. She never complained about pain and was constantly courageous as her body declined. I wish she was here to be with me through this surgery and beyond, but my memories of her valor resonate through my spirit.

Then there are my many friends. They have tirelessly prayed for me, sent me gifts, encouraged me and made me laugh. You will hear all about them soon!

But now it’s off to surgery, into the land of Mordor and closer to Mount Doom. I want to make my mastectomy scar something beautiful. For the first time, I want to adorn my body with some form of art. And I am open to your suggestions...

Dancing with Dragonflies; Darting from Disaster

My bike tires spin wildly as I careen down the long driveway of our new house. Shimmering red dragonflies flit around me, diving through the humid air. They chase after others that shine with the purest gold and show no racism when joined by those that are glimmering green.

Hundreds of dragonflies are circling my bike, flying with me, swift as the wind. I spin in and out trying not to hit them and as the bright sunlight skips off their diamond-cut backs, shooting colors into the sky. I feel like I am cycling on a road made entirely of precious stones. I am filled with joy. I am in another world.

As I reach the huge gate that now guards the 40 acres we will soon be living on, I find a large, red dragonfly prone on the grass. I bend down and touch the tip of its intricate lacework wing. I stroke it's head and look at those giant, cut-glass eyes.

They stare blankly back. The heat must have been too much. Then I see another crushed into the gravel road, hit by a car, or maybe a bike.... All the sparkle, the life, has gone out of this beautiful creature.

I think about the news report I read this week...more than 12 children are dying in Somalia, every hour, of hunger. The famine there is now affecting nearly half of the Somali population or 3.7 million people. I look down at the decimated dragonfly and gently pick it up, carrying it to the Waskasoo Creek.

 This is the source of their life and now, as I drop it on the swiftly moving stream, the means of this one dragonfly's burial. My joy is mixed with sorrow. This is life...

...and death.

Millions of children caught in political nets, innocent eyes wondering why their stomachs are empty when there should be enough food. Why is it not being given to them? With the way Somalia has been carved up by clan leaders and militias, access to aid groups has to be negotiated every step of the way. That takes time. Many starving children, do not have that kind of time. The sparkle, the creative energy, the love for life is being extinguished, like putting a damper on a candle. All the potential for creativity, for good, for love - gone.

As I bike back through the woods and look at the affluent homes around me, I wonder at the incongruity of this world. Many of the people in this area give money to help the hurting and starving. I give what I can, but I cannot give enough. No one can.

I admire the courage, beauty and strength of the dragonflies, such delicate creatures. Through their transparent wings one can better see the fragility in all of life...

A Somali mother starts the 37-day trek, with her five children, to a Kenyan refugee camp. A day before they arrive her four-year-old daughter and five-year-old son die of exhaustion and hunger. They stopped under the shade of a tree for a short rest. She thinks they are sleeping. She must leave them under the tree and try to save her baby and the other two children. Beauty. Strength. Courage.

I think back a few days ago to the treasures I discovered in my Mom's Cedar chest. There were locks of my hair and the baby bibs my brother and I used. My pink, faded, stained bib proclaimed, "Good Girl!" I wonder how they knew...

This Somali mother will never save precious locks of her children's hair, or their bib's with stains that signify an overabundance of food.

My husband and I are almost moved into a beautiful home nestled in the midst of the woods. This move has been one of the most difficult tasks we have gone through in recent memory. We hate moving and so have made a point to enjoy every moment, delight in the treasures we have discovered and relish the memories old letters and photos have provided. We are truly blessed, but our time is not our own. Even though we do not face imminent starvation and death, we have no idea how long our life's flame will burn...

In these last few weeks, I have determined to let my flame burn as brightly as possible. I will release all my colors into the sky, exploding with everything that is in me. I want to live up to the example I see in my fellow human beings - beauty, strength, courage!