Letters From Narnia

I have had a curious kind of Spring; topsy-turvy. Instead of new life growing in nature all around me, I found a lump in my breast and cancer growing within me. As I journeyed through the acceptance of my disease and the aggressive treatment I chose to undergo, my view of my future changed. Instead of assuming I would have decades to watch my kids grow up, I thought, “what if I don’t?!” and tried my best to be more loving and affectionate. Instead of waking up in the morning and wandering around in my pyjamas with my hair standing on end, I thought, “what if I lose this hair in a few months, and look shitty even if I try to look pretty?” and showered, styled my hair, and put on makeup. I looked at my enormous garden space and accepted that I would have times when I wouldn’t have the strength to dig in the dirt and pull the weeds. I begrudgingly admired the beautiful hanging baskets full of flowers that my furry man went out and chose (something I wanted to do desperately) because I knew if we waited until I was feeling up to it, the season might pass us by. All that time, I was waiting for the surgery incisions to heal, so I could meet the oncology team at the Cross Cancer Institute and forge ahead with the chemotherapy I was told I would need. All the while I wanted my body to heal quickly, I also wanted time to slow down before I had to head into a summer of unknown chemo side effects. There was nothing I dreaded more, now that I found out I could survive general anesthesia and Bodacious Ta-Ta Tuesday.

While I healed, we had follow-up visits in Edmonton, with my plastic surgeon. As the stitches on my breasts faded, and my transplanted tissue started to feel smoother and look as close to normal as I could hope for, and as my abdomen incision slowly closed, my doctor always asked the final question during our visits, “Do you have any questions or concerns?” And Markus would ask, “How soon can she travel?” Dr. Schembri’s eyes would crinkle as he smiled, and he would say, “If you promise to stay in your chair and not do any gymnastics while you are there, you should be just fine to go to your high school reunion.” We have been asking this question ever since we met him. The only high school reunion I would ever go to is not just for any old high school. The high school kids I always want to reunite with are from the Taipei American School. We were a tiny little school in Taiwan. Our experiences growing up there have cemented our friendships, and I am never quite as comfortable in my skin as I am when I am with a group of TAS graduates. This recent reunion was an idea that my friends Dacia and Kerri had come up with last year. Any time you bring a few TAS graduates together, anywhere in the world, we call it a reunion. Dacia planned the reunion at her parents’ B&B in Anacortes, Washington, a little spot of Heaven in the San Juan Islands. Through the winter, we put our heads together and had so much fun planning and chatting about it. When I got hit with Barnard in the Spring, I realized that surgery would probably take a huge bite out of my plans for the May reunion. One more shitty thing that I came to accept this Spring… Until Markus caught me reading the Facebook page for the Anacortes reunion wistfully, and told me, “We are going to get you there. This will be your reward for the surgery and kicking Barnard’s ass. You do your job and rest properly like the doctors order, and I PROMISE you we will get you to that reunion somehow. Being with your friends will be good for you. You’re going.” And that is where the Question came in during our visits with my surgeons, “How soon can she travel?” So ever since March, when I first met with the surgeons, we worked toward the May 24th goal of the Anacortes TAS Reunion. A better carrot, there never was. On May 24th, 1 week shy of the minimum 6 weeks recommended recuperation period, I hopped on an airplane in Edmonton and headed out to Anacortes. Missing only one piece of luggage, I met my best friend Duncan Hsu (I call him Punkin Poo and he calls me Poo Pest – my favourite nicknames from childhood) at the baggage carousel in Seattle, and spent the next 2 hours driving to Anacortes while catching up on the last 3 years we had missed together. Arriving on the sleepy little island of Anacortes, Dacia, Kerri, and my other friends tumbled out of the cozy little house, and their hugs took away all the residual pain of both the surgery and the worry of cancer. We spent the entire weekend laughing non-stop. There was crying, but only when it was time to say goodbye. My friend John made an announcement that he was going to join my CIBC Run For the Cure team, The Suepremes, and fundraise for the Canadian Breast Cancer Society. He passed around his hat and said that he would shave his head at the end of the weekend. He raised hundreds of dollars, and I did indeed shave his precious head at the end of Sunday evening. I had to catch an airport shuttle at 1:45 Monday morning, so I never went to sleep on Sunday. And when it was time to go, each friend hugged me and wished me well, knowing that I was flying home to meet with the oncologists in Edmonton, to face chemotherapy. Collectively, their love and support floated me out the door and up into the sky back to Canada.

When I landed in Edmonton on Monday afternoon, I took a taxi straight to Dr. Schembri’s office for another visit. He does a little victory dance every time he examines me and sees his precious babies, “They’re PERFECT! So PERFECT!” He told me that the sections on my abdominal incision would take some time to fully heal, as it was healing from the inside-out, but that I am indeed Wolverine, as Markus labeled me; my body is healing like a superhero. Knowing I was meeting with the Cross Cancer Institute the next day, to discuss chemo, he said to give him a call in 3-6 months and we could talk nipples. I can’t wait to make that call and get him on the line and say, “Hey there…let’s talk NIPPLES.” I don’t know anyone else who has ever made such a phone call. That one is going to give me a giggle, that’s for sure.

Markus and I rendezvous-ed at the Fairmont Hotel MacDonald later that afternoon, and we braced ourselves for our afternoon at the Cross Cancer Institute the following afternoon. Actually, I mostly just slept, having exhausted myself during my reunion weekend. On Tuesday, we dilly-dallied our morning away, and reluctantly made our way to University Avenue and the Cross Cancer Institute. In the parking garage, we passed ladies on their way back to their cars, scarves covering their heads. I couldn’t swallow past the lump in my throat. Markus grabbed my hand and squeezed it tightly and we slowly walked into the lower level of the institute. The very first department we passed was the Wig Department and the rooms where they conduct makeup and beauty tips for those undergoing chemotherapy. I resisted the urge to peek into the door, thinking I would get the chance to see plenty later…

Upstairs at the main registration area, we realized that we were over an hour early, but I stood in line and filled out the paperwork anyway. They made me a special red plastic I.D. card that I would need to bring to every appointment or treatment. I did not like that card. That card was my fear made tangible. I stuffed it into my purse, hoping it would get lost among the mess of receipts and lipstick that lived in there. Then, the registration lady gave me to a volunteer, who was told to bring me to my appointment area. As we walked through the centre, the volunteer pointed out the various areas to us; the lending library, the information department that would be very helpful with resources for families, the 2 cafeterias, the gift shop, the pharmacy, and the labs. The facility is huge. Finally, he deposited us into our waiting area, where a nurse had me fill out more paperwork and instructed me to change into a trusty hospital gown and robe. Then, we were shown into a room where we were told to wait for our different visitors.

Our first visitor was a heavily pregnant young nurse named Magdalene. I kid you not. For someone who has recently lost some of her faith in this unfair scuffle with cancer (if good things happen to good people, and I try my best to be good my whole life, how the Hell did I get cancer, EH?! Explain THAT one, God…), this was a little bit of a punch in the stomach. I had to take an extra breath to answer her questions, as my mind kept whispering, “Mary Magdalene was a best friend to someone who had so much more to suffer than you, Sue.” After Nurse Magdalene left, Markus and I made silent eye contact until our next visitor. She was a soft-spoken representative of the Cross Cancer Institute Tumour Bank. After all of my tumour was removed during the mastectomy, and the appropriate amount was sliced and sent to pathology, the leftover bits had the potential to be deposited into the Tumour Bank to be used for research in the fight against breast cancer. She was there to ask my permission to use the tumour for research, and to make the deposit official. As I signed the papers, I wondered, who ever would NOT give permission? If they could make some use of Barnard and somehow benefit future cancer patients, why on earth wouldn’t I sign? I just had to give a few tubes of blood to accompany Barnard to his future home in the Tumour Bank, and GOOD RIDDANCE to Barnard! That was a very cool feeling, knowing a bit of me was going to stay in the institute and perhaps help others.

Our final visitor was a Nurse Practitioner by the name of Margaret Ann Vlahadamis. She was very dry and stood over by a white board across the room from us. Markus took my hand, and we held our breath. With a very stern look on her face, NP Vlahadamis said, “First of all, before I write all the details and numbers on this board, let me tell you this: based on your tumour’s stage and grade, the oncology team has determined that you will need no radiation and no chemotherapy.”

no. chemotherapy.

There was a ringing in my ears, and I shook my head…what was she saying? Focusing on her lips, I could see her saying, “Breast cancer is fought with several different types of treatments. There is surgery, there is radiation, and there are many types of chemotherapy. You should know that your double mastectomy was a major treatment by itself. Your cancer was completely removed. The pathology revealed that it was a 1.4cm Stage 1, Grade 1 tumour; very slow growing. Your 3 sentinel nodes revealed no lymphatic spread, and during surgery it was found that there was no lymph vascular infiltration within your breasts. It is hormone receptive, but HER2 negative and not Triple Negative cancer. You were very fortunate to catch your cancer early, and for the next five years, you will only need to take one Tamoxifen pill each day. You will have 6 month wellness visits with your family doctor throughout that time, where you will be checked for possible metastasis of the breast cancer into other parts of your body. And that is all.”

Stunned, not believing this could possibly be true, I actually ARGUED with the poor woman. What about my extensive family history?! Won’t that increase my odds of recurrence? My cancer surgeon had warned me to expect chemo. How could it be that I’m all done, that there is nothing further to suffer through?!

After patiently explaining that my family history of breast cancer has nothing to do with the treatment of the breast cancer we removed – WHAT?! (they focus on treating the cancer they hold in their hands – on its characteristics, not on what my future could develop). That my cancer was removed completely by my mastectomy and the Tamoxifen would starve any microscopic bits that might be floating around in my body. That my family history of breast cancer would only be a concern for my ovaries and fallopian tubes down the line, and I would need to approach that outside of this visit. Only then, did she patiently say, “This is GOOD news…”

And only then did her words sink in. No chemo and I am done with the fear of Barnard. I turned to Markus with a lost look on my face; all my anxiety was still built up inside – where was I supposed to put it? Markus repeated what NP Vlahadamis said, “This is GOOD news…” I decided to stop fighting it. Even though I was SURE they were mistaken, that this was too good to be true, I decided to play along. I was confident someone would catch the mistake in a few days and call me with the corrected news and tell me to get myself into chemo…So I turned back to her and smiled and asked what I should do next. She told me to take my new prescription to their pharmacy, and she would be calling me in a few weeks to see how the side effects of Tamoxifen were treating me.

In a daze, I changed back to my regular clothes, and joined Markus in the hallway. We kept looking at each other in disbelief, then he would grab me and laugh out loud and cheer. In the pharmacy waiting room, he sat across from me and kept asking, “What shall we do to celebrate?!” We giggled and said, “I can’t believe it!” too many times before I looked around and realized I was surrounded by people who were suffering from cancer, waiting for their prescriptions, who didn’t have any good news for themselves. Sobered, we listened to the pharmacist explain about the many side effects of Tamoxifen (Hello, Menopause) and grinned when she politely whispered about “vaginal dryness and discomfort” and the various solutions for that. I can buy a fix for vaginal dryness on the shelves of my local pharmacy…can’t say the same for cancer, right?

Tamoxifen grasped in my hands, we retraced our steps to the car; past the cafeterias, past the information centre, past the lending library, and finally past the wig department. I touched my hair and murmured, “I’m keeping my hair…” Markus whooped and hugged me.

In the car, he told me that he was getting dozens of responses to his good news post to my friends on Facebook. He urged me to tell my friends and family right away; that everyone would be so relieved and happy for me. How could I tell him that I secretly could not believe the good news? What if I made the announcement, and I got a phone call the next day, crushing me with the opposite news? I flapped my hands and told him I would write it later. I couldn’t even call my own children to speak the words out loud; I was so scared I would jinx things. We bought a feast at the T&T asian supermarket, and brought it home to the kids. The whole family was giddy with the news, while I sat there quietly wondering. Late that night, I cautiously wrote about my day, sharing the news on Facebook, then sat back and waited for the phone call I was dreading. I put off writing in my blog, thinking I would make it officially good news if nobody called me with bad news in a few weeks.

This week, I got a phone call from a private caller. A voice sounding just like my best friend asked for me…so I yelled, “PUNKIN!!!” and there was a long pause…then, “Uh um, no, my name is John Mackey. I am a medical oncologist from the Cross Cancer Institute.” I swallowed my immediate panic, and laughed and explained about Duncan/Punkin and that his voice was an exact match. With a smile in his voice, John Mackey replied, “Well, if Duncan has the same voice as me, then he must have a very nice voice indeed, haha! I was asked by Doug Goss to review your pathology and double check that you are having the appropriate treatment…he said you are a family friend? I just need your verbal permission over the phone before I open your medical file and read it” Still panicked, I mumbled yes and waited…This was the phone call I was waiting for – finally someone realized that they messed up and my cancer wasn’t all gone and I would have to go to chemo after all and lose all my hair and get sick and be tired and maybe maybe I wouldn’t live as long as I wanted to… There was total silence as he read over my file. I think I held my breath the entire time. When he started to speak, I still couldn’t breathe. He said these magic words, “Sue, based on what I am reading, you can be sure that the cancer has been removed and is gone from your body. The Tamoxifen is precautionary – 5 years of starving any possible cancer that could have been missed on a microscopic level. You should feel confident that you are well. Now, let’s talk about your family history and what that speaks to.” I floated as we discussed genetic testing and I complained that testing positive would endanger future life insurance for me and my children. He paused and said, “Um. You have already had breast cancer. That horse is out of the barn. Life insurance companies will discriminate against you and your children because of that, regardless of the genetic testing results.” I had to laugh when I realized I had totally forgotten that I have breast cancer. It feels good to forget. By the end of the phone call, he had recommended I discuss prophylactic removal of my ovaries and fallopian tubes with my gynaecologist, and wondered if I was ok with that; with early onset menopause. I reassured him that I was done using my ovaries, that the Tamoxifen will imitate menopause for the next five years, and as my mom went through menopause early, I expected it was around the corner anyway. I thanked him for his time and hung up, posting the funny phone call on Facebook. Immediately, my friend Wendy, who lives in Edmonton and is wading through the cancer war like me and knows every doctor out there, posted, “Dr. Mackey is the best oncologist in Western Alberta. You are very lucky indeed!” Holy shit. So, another guardian angel has landed and now I have officially lost track of how many of them are in my life. How blessed am I.

Today, we went to pick up a friend from the hospital in Hinton, and took a little side trip to the garden centre in Canadian Tire. I chose new veggies to replace the ones that have been eaten by frost in our garden, new herbs, beautiful flowers, and seed potatoes. On the ride home, we listened as our friend told us how lucky she was that although she had fallen off of a 20 foot cliff while rappelling, she was wearing a helmet and managed to not break any bones. I shook my head in disbelief, and then I stopped myself. I need to stop this denying of good news. I told my friend that I was so happy that she was safe, and that I was amazed at what a great adventure she survived. How blessed was she!

After we brought our friend home, we settled into gardening. Markus worked on the flowers in the back yard, and I worked on planting pumpkins, tomatoes, beans, cucumbers, and cabbages in our vegetable patch. The sun shone down warm on my shoulders, my knees got dirty, and I sweated. Every spadeful of dirt I dug up was rich with pink wriggling earthworms, and every leaf on every plant glowed green with life. I sat back on my heels and looked around me. My topsy-turvy Spring was over. As I breathed in the warm fresh air, I realized that Summer was here, and I was surrounded by new life. I can dig in the dirt and pull weeds and let my hair get messy. I can plant the vegetables that I know I will harvest in the Fall. And I can look at those hanging pots of flowers that Markus chose, and I can see that hummingbirds have come, attracted to the colourful blooms. Ganbaru feels extra good in the sunshine!