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.

Radical Mastectomy Or Frontal Lobotomy?

It was a running joke among some of my friends, well, those who thought they were my friends... 

I had no choice, a mastectomy was necessary to stop the cancer from invading the rest of my body, but since I routinely did some idiotic things, some people suggested a frontal lobotomy wouldn’t be so bad. I was going in for surgery anyway...

I proved my need for this just two days before my surgery. I was watching a YouTube video on mastectomy recovery, but it started with the entire surgical procedure - in full color - entirely uncensored!! It’s now been two weeks since my surgery, and I still can’t get the images out of my mind. I watched, mesmerized, as the scalpel sliced open the breast, splitting it sideways like a ripe cantaloupe, spilling its insides everywhere.

I admit, it was another dim-witted thing to do. I have a degree in Science and have done my fair share of dissections, but this – well, this made me nauseous. Yeah, the frontal lobotomy wasn’t such a bad idea after all...

When I told Peter about the video I watched, he responded, “Why did you do that? It’s surgery! Did you think it was going to be pretty?”

Maybe I did. After all, isn’t breast cancer a pretty pink ribbon? Ever since the fall of 1991, when pink ribbons were handed out to runners in the New York City race for breast cancer survivors, this little pink ribbon has been the rallying point for Breast Cancer awareness, support and funding around the world. What was I supposed to think?

Little did I know that during my surgery I would have an observer, someone like me, watching a mastectomy for the very first time.

But there were lots of preliminaries before the actual “Big Day” arrived. A pre-admittance nurse gave me a call to go over all the particulars so I would be totally prepared.

As she walked me through the process of what to bring and went over my health concerns, she mentioned that I would have to stop taking all natural supplements two weeks before surgery. Considering that my surgery was in exactly one week, I became slightly concerned.

“What kind of supplements?” I asked.

“Anything that isn’t a vitamin or mineral,” she astutely replied.

I had read that ginseng and gingko biloba could cause problems but weren’t sure why. When I told her I was taking both of these supplements she told me to STOP IMMEDIATELY!

Okay, okay! “Are there any complications that can arise if someone has been taking these natural products?” I asked.

“Oh, I don’t want to tell you the horror stories of what happens in surgery,” she replied. “One never knows how these supplements react with anesthetic.”

What an incredible ‘bedside manner.’ She obviously helped me feel calm and relaxed about the surgery, putting my mind at ease.

When she also told me to stop shaving two weeks before surgery, I almost asked if she wanted to use some of my gingko.

Then she let me know I was NOT to use any make-up on the day of the surgery! And here I had set up a manicure and pedicure the day before. I thought wearing lots of eyeliner, mascara and lipstick only appropriate if you have to have a mastectomy – I mean, you want to look your very breast!

I asked the nurse how long she expected surgery to last as my surgeon said it could take anywhere from one to two hours depending on the sentinel node biopsy. But the nurse retorted, “Your surgeon’s only booked in for an hour so she needs to get it all done in that time.”

Oh...good! I wouldn't want her to rush and make a mistake or anything...

I jokingly asked the nurse if I should use a felt marker to indicate which breast they were to remove and she said that wouldn't be necessary. The pre-op doctor would use a marker to indicate the cut lines so there’s no error on the surgeon’s part.

Whew! Good news there. I certainly didn’t want to have a double mastectomy.

The sentinel node biopsy preparation was at 7 am and after that I would wait around until my surgery. The only thing the nurse said I was allowed to wear was ‘clean’ socks. I made a mental note to do laundry the night before.

On April 4^th, I entered the hospital armed with a double pair of clean socks, ready for battle. When prep for the sentinel node involved inserting four needles into my right breast with radioactive dye, I asked how painful it was.

“Some women can handle it,” the doctor said. “But others scream in pain and some say they can’t do it at all.”

With those comforting words I gripped Peter’s hand and closed my eyes. The first three needles were a piece of cake but the fourth, well - I didn’t quite break Peter’s hand.

Then there were two pleasant surprises. A good friend of ours was in Red Deer that morning, for the Mayor’s Prayer Breakfast. She decided to visit me but had no idea where the hospital was. The first person she asked told her, “Follow me. I’m the chaplain there and I’ll lead the way.” When she arrived, a visitor who was just pulling out of a rare parking place offered her his time card with over 40 minutes still on it. Even though Peter and I were in a ‘holding’ room, she found us, joked with us and prayed for me before surgery.

There were three breast cancer surgeries scheduled back-to-back and I was in the middle. When a young woman walked in and introduced herself as our student nurse, I had no idea what a blessing she would be, especially to me.

We were the only ones to have a nursing student (Jess), shadow us throughout the day.

As we laughed and joked with Jess, the time flew by. She was a movie buff and had a vivacious personality. We welcomed her into this life-altering day and our lives. All too quickly they called for me. They were ready. Was I?

No wheelchair this time, I walked into the pre-operating area. Peter was stopped at the door. He looked a bit shocked that he could go no further. One last kiss, then he was gone.

But there was Jess, grinning at me, walking with me. For the first time I realized she would be beside me the whole way, even in the operating room watching my mastectomy. I thought back to the images of this surgery I had seen and prayed they wouldn’t harm her innocent eyes.

When I was settled onto a gurney, my IV hooked up, the surgeon marched in with a black felt marker, putting her insignia with an arrow above my right breast and a star on my right hand for good measure. I told her that wasn’t really necessary as Jess was there to make sure she did a right mastectomy not a frontal lobotomy.

The surgeon smiled at us, patted my shoulder and said everything would go well.

I found out Jess was a film buff and as we were talking about some of our favorite movies the anesthesiologist came for a chat, I was becoming more nervous about the surgery and asked for something for anxiety. The anesthesiologist explained I would be going into the operating room in ten minutes so there simply wasn't time for the anti-anxiety medication to take effect. Becoming even more agitated I mentioned that this could cause serious heart palpitations for me.

The anesthesiologist just shook her head. “No, I don’t want to hear that,” she said. “Just tell your heart that is not going to happen,” and she walked away.

I looked into Jess’s startled eyes, but she shrugged her shoulders and said, “Hmmm, that was easy.” 

Then she asked me for my Top 10 films of all time. She was trying to distract me – we both knew it – but it worked! Amazingly, I found that she had Schindler’s List and Franco Zeffirelli’s Romeo & Juliet in her Top 10 (as they are in mine).

When the anesthesiologist came back and started to wheel me out, she said, “This is it. Are you ready?”

An electric burst of fear swept through my body from head to toe. I was literally tingling, and knew there was no way I could do this. But Jess looked at me and gave me her double thumbs up signal and I thought of all the people rooting for me and praying for me. Courage slowly dragged the fear from by body and by the time we were in the operating room I was fine.

Jess was introduced and she mentioned this was the first surgery she had ever seen. I looked across at her and said, “Then this will forever be in your Top 10 Jess, because it is your first.” She nodded at me, her eyes shining.

When a nurse asked Jess what her goal was, she grinned from ear to ear, “To make sure Doris has a right mastectomy and NOT a frontal lobotomy.”

The nurses were laughing and it was such a jovial atmosphere the anesthesiologist decided to give me laughing gas. I was gone...

For the first time,I dreamt while under anesthetic. It was pleasant and I didn’t want to wake up but when I saw Jess’s bright eyes, I gruffly asked how it went, my voice raw from the intubation.

“No lobotomy,” she said. “They even got the right breast.” We grinned at each other - our special secret. She had to leave but assured me the surgery was amazing to watch and that she really enjoyed her time with us.

Peter was soon holding my hand, so happy it was over. I later found out he did a great running commentary on Facebook saying that once the surgery was complete, “my right breast was just a distant mammary.”

They gave me a barf bucket right away but I didn’t need it so Peter suggested I put it on my head to show how I was “cowboying up,” after major surgery. Needless to say I reacted very well to the anesthetic. No chills, shivering or throwing up.

The first night was brutal as my nurse could have used some of my gingko herself. I was peeing green dye from the sentinel node biopsy that they were supposed to measure each time, but I ended up doing it. They refused me my normal meds or anything to help me sleep and were wondering why my heart rate skyrocketed. They taped my chest because of a huge edema and did it wrong which caused excruciating pain and some spectacular bruising.

Thankfully when the daytime nurses got on, all that changed. I got my meds, slept most of the day and went home that evening!

My drain came out 10 days later and I am slowly healing. But the reality of the collateral damage is just sinking in. I still don’t know what my pathology report will say and the road ahead looks like a long one.

The battle against cancer is filled with unknowns, but some of them, like Jess, are blessings. They are reminders that God is with you, even in dark places.

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...

Breast Cancer - My personal journey to the heart of Mordor

Breast Cancer! Two words I never expected to hear. My family had a history of leukemia, and I was convinced I would die of this, but the very idea of breast cancer was unimaginable.

They were words even my doctors avoided saying out loud.

I believed I had one whack of an infection. It wasn't possible for tumors to grow that fast...was it? I had felt a hardening in my right breast at the end of January. I put it down to hormones (they rule the body)! There was a slight discharge from the nipple - nothing I was overly concerned about. But less than two weeks later, a lump the size of a lemon grew over a weekend. That got my attention.

When I went for my mammogram, (just in case this wasn’t an infection) no one was prepared for what happened. The attendant took the first image squeezing my right breast from the top down on a glass plate. I didn’t look down until she came beside me whispering, “Oh, my gosh! I’m so sorry if I hurt you.” There was a pool of blood covering the glass. The young woman began freaking out. She moved me away, gave me a clean towel for my breast and began disinfecting the area as if I had AIDS.

There was one more image to be taken and as she moved me into position we both realized this would not be good. She asked me to hold the towel against my breast for as long as possible. But the metal plates, squeezing my breast sideways, were brutal. It left another, larger pool of blood, on the floor.

She was apologizing, cleaning, disinfecting, changing her gloves again and again. I found myself trying to help her calm down. I hoped the lump was just filled with blood and that they had squeezed it out. But as my hand instinctively went to my breast, it was still there...larger than life.

We looked at the mammogram together and she indicated translucent white threads that filled almost a third of my breast.

“We need to have a better look at what’s going on in there,” she said.

By the time I got to the ultrasound, word about me had spread everywhere. As I bared my breast so the technician could put the thick gel all over it, I explained there might be some bleeding.

“Oh, I’ve already heard all about it,” she retorted, like it had been broadcast over a loudspeaker. “None of the doctors have ever seen anything like this.”

That stopped me cold. Fear crept in. These doctors worked with women who had breast cancer day in and day out. None of them had ever seen this before? What was I dealing with?

As I was puzzling over these thoughts she clucked her tongue. 

“What do you see?” I ignorantly asked.

“I’m not allowed to tell you anything,” she said. “The doctor will talk to you afterward.”

But she became kinder, letting me know I was doing really well to stay so still. Then she looked at my chart and said, “You mentioned this lump grew in a matter of days. You were kidding about that, right?”

I stared straight at her, “No I wasn't. It grew in a weekend.” She just shook her head and clucked her tongue again. 

It was then I knew. At that moment I began praying for strength, and courage; for no tears in the face of this. The world was spinning the wrong way and I just wanted to get off. When she began taking images in my right armpit, I closed my eyes and prayed harder.

After the doctor had walked in, said “Looks like a suspicious lump,” and abruptly walked out, I asked the woman to show me the images and tell me what made this tumor different from a cyst. She was happy to do so and explained that a cyst would have been dark, even at the core. This tumor was translucent with beads that looked like pearls around the edge. Beautiful but deadly. It was sobering.

I walked outside in a daze and called Peter. He was in a jovial mood asking how it went.

“Not good,” I said. “I have breast cancer.” It was the first time those words had been uttered.

“WHAT? Seriously?”

When he arrived, a few minutes later, there were tears in his eyes.

We hugged a long time. Later, he told me he would love me with or without breasts, and with or without hair. I had married the right guy! I knew that all along of course, but his response, in a moment like this, spoke volumes about his character and about our relationship.

My GP called the next day, after she received a copy of the ultrasound, and matter-of-factly said, “So, you’ve got cancer. We need to get some more tests done quickly.”

Chest x-rays, a bone scan and abdominal ultrasound were scheduled for next week. They would all be on the same day. They wanted to see how aggressive the cancer was and how far it had spread.

I was stunned. Trying to grapple with this diagnosis, that nobody would admit to until I had a biopsy, turned my world upside down. I would never be the same again and my life was about to head into uncharted waters.

Peter had a photo assignment and wanted me to come along. I was swamped with journalistic stories and normally I would have stayed home and worked. But trying to concentrate was impossible and I just wanted to be with him. I needed to enjoy some time with the man I loved more than life itself.

I always believed Peter was strong. Peter copes well with anything (except computer problems). Peter has walked me through 25 years of Chronic Fatigue Syndrome. I knew that if I died, it would be tough on him, but he would cope. I didn’t think it would be devastating to him at all.

But when I saw how wrecked he was by all of this, I knew I had underestimated the impact my death would have on him. He was rocked to the core.

When he was working on his last few shots, I sat in the car watching the spectacular sunset, enjoying every moment of it.

When he stashed all his gear and sat down, he took one look at the fogged up windows and joked, “Were you breathing?” I smiled weakly at him and replied, “In a few months you won’t have to worry about that anymore.”

We just looked at each other smiling at the black humor, but realizing this could very well be our new reality.

Thus began my trip to Mordor and the fires of Mount Doom, carrying this heavy burden around my neck. Soon I would tell my family and friends and this motley group would join me in my journey, coming to my aid in ways I couldn't even imagine...