Love | Letters From Narnia

Birthday Survivor

09 Sep 2020 1 Comment

by Suelinhess in Birthdays, children, Family, Healing, hope, Love, parenting, relationships, support, Uncategorized Tags: ectrodactyly

What a contrast this day is to the same day 20 years ago! Simon’s day of birth couldn’t have been more perfectly planned or organized. His two sisters took us by surprise by arriving a few weeks early, but Simon seemed pretty happy hanging out in the womb until the last minute. So we were scheduled to have labor induced. I had time to leisurely pack my bag, shower, and even put on makeup. The girls made adorable artwork to hang on the walls by the hospital bed so they could cheer me up during the birth. I still have the crayoned happy-faced sun drawing from Emily, with “HAPPY LABER!” (sic) scrawled across the top. Markus and I checked into the maternity ward of the Community Hospital of the Monterey Peninsula (CHOMP) – no waiting required. It felt like checking into a hotel. I even posed for a pre-birth photo, looking happy and relaxed, knowing my baby boy was only hours away from joining us. The nurses were calm and soothing, gave me delicious drugs to ease the pain, and when the time came for my epidural, the anesthesiologist was right there to administer it. Markus didn’t faint this time around, because he was a pro labor coach by then, and Simon came into this world like a sunrise on a beautiful morning.

We had a few hiccups in the beginning, because Simon was unexpectedly born with syndactyly and ectrodactyly in his left hand. His index finger and thumb were fused, his middle and ring fingers were missing, and his pinky was missing its middle joint. Twenty years ago, there was scant information about the condition, so the first doctor to pop into our hospital room was a slick car salesman-like plastic surgeon from Carmel. “Nah, that’s not a problem, folks! I can just snip off a few toes and transplant them on his hands! Piece of cake!” *record scratch* Markus and I looked at each other with horror and politely declined his assistance. After our initial shock of learning about Simon’s condition, the doctor who delivered Simon referred us to the Medical Genetics department at the University of California San Francisco. Because Simon’s condition was unilateral, there was a lower risk of systemic abnormalities compared to bilateral conditions, but they wanted to check him from head to toe and inside and out. I think by then, he was about two months old – a roly-poly bundle of giggles and smiles. It’s funny – Markus and I had lost our initial alarm about Simon’s hand by then, and although we were concerned about his medical condition, all we could worry about that day was the fact that he hadn’t pooped in a couple of days. Sure enough, after charming every medical professional on the genetics team at UCSF, Simon had a diaper explosion. It was one of those overflowing diapers, so Markus and I were horrified, but the giant grin on Simon’s face made everyone around him laugh while we scurried to clean up the mess. At the end of a long day, the team pronounced him perfectly healthy and we drove back to Monterey with a big sigh of relief.

When Simon was three months old, we were referred to the top hand surgeon in San Francisco, with the hope that he could advise us with how to best proceed with helping Simon have more functionality in his hand in the future. Would he be able to tie his shoes? Was there a miracle surgery out there to reconstruct his left hand to look like his right hand? After examining the happy little baby, the doctor sat us down and said the most important thing to us that anyone has ever said to us before or since. He told us that even though Simon’s hand is different than other people’s hands, he will grow up knowing only his hand as it exists and will learn to do things his own special way. Therefore, he wasn’t the one that would need to adjust his attitude toward his special hand; we had to adjust our attitudes. The doctor told us that when Simon grew to be an adult, if he wanted to seek out new technology or innovative surgeries to change his hand, he could make his own decision. He told us to wait and see how Simon developed – he said we would be surprised by how innovative a person with a physical disability can be to adapt to adversity. The wise doctor was not wrong. Simon has led a blessed life, finding ways to overcome obstacles and thrive.

I’ve read about blind people whose sense of smell, hearing, and touch appears to be amplified in the face of their disability. In a similar way, Simon possesses an amplified level of compassion, optimism, and good humor. However, in this, his 20th year, he has been tested in awful ways. He was rolling along in his Freshman year at a school he picked specifically because they offered him a scholarship to throw javelin for their Track team. Because of the Pandemic, the season was canceled, with no great hope for a season in his Sophomore year. Classes were moved online, the border to Canada, where his girlfriend lived, was closed, and he ended up having to move home to self-isolate with us. Then his best furry friend since Kindergarten, Hercules, died suddenly. His girlfriend had no choice but to return to her home in Sweden after her Canadian visa expired. And just when we thought it couldn’t get worse, in June, my nephew died from a drug overdose. Death, grief, heartbreak. We almost didn’t think Simon would be able to regain any sense of well-being, but he slowly pulled himself up.

We thought the unplanned chaos would come to an end this Fall, as he went in with five guys from school to rent a house close to the university. The plan was for them to all work out together and Simon to train for the hoped-for Track season in the Spring, while attending online classes. That plan was enough to ease some of the pain of his parents picking up and moving down to California. He was so excited to start the school year and to have companionship at his house. It all came to a screeching halt in the first week of living there. Simon didn’t know his housemates very well and started worrying when the consecutive days of all-night parties at the house revealed more than just beer. His housemates were into drugs. When he found that out, he tried keeping to himself in his room. One night a drug dealer came over with a gun. There was a confrontation, the dealer left and returned with friends, and they ended up fighting with Simon’s housemates in the street outside of the house. Understandably freaked out, Simon left the house to wait at a safe distance and saw a cop car approach the large group of young white men. Then, he watched white privilege in action, as the cops did not even get out of their car, and eventually drove away. Later, he heard one of his housemates say he was going to go out to buy a gun and go after the guys they had been fighting. Knowing that there was nowhere for that situation to go but downhill, and fearing for his life, Simon hopped into his car and drove all the way to Seattle to stay with Hanna, our second daughter. Exhausted, but finally feeling safe after several sleepless nights, he fell into a deep sleep for hours. When he woke up, he told Hanna everything. Not wanting to worry us, they called our oldest daughter, Emily, who lives in Canada now. Together, the three of them talked it out until Simon could figure out what to do next. Feeling stronger, Simon finally called us and told us what had happened. All of this took place just last week.

Chaos. How do you wrangle it and make it your bitch? You call on the Assassin. Hanna, who earned that nickname as a young girl for a variety of reasons, rose to the occasion like the kickass woman I knew she would grow up to be. She welcomed Simon into her tiny studio apartment, and they have been the best roommates to each other for a week, now. This is Simon’s first birthday away from home, so she secretly told all of us to join a family Facetime early this morning, so we could sing our usually wake-up birthday song to him. She stayed up late last night to artfully wrap the presents we sent in several of her long-sleeved tee shirts. This morning, we all sang to him and watched him unwrap his presents. Then she took him out to breakfast and birthday gift shopping for some shoes. When they returned home, balloons and presents from Emily were waiting for him.

I have never, in my life, been prouder of my children. I don’t know about you, but I always used to worry about what would happen if my husband and I died at the same time. You know, flying in an airplane, or *cough cough* driving on a two-day car trip from Seattle to San Francisco, through wildfire-devasted countryside… Who would hold them up and support them during their grief? How would they respond to the traumatic event? Last week, I witnessed what would happen. My children would gather in close and support each other. They would openly love each other and hold each other up. I’ve had a glimpse of the future and I feel so relieved.

So this has been a horrible, chaotic year, all the way through. But that ends today. Today, my beautifully strong young son turned 20 years old. And the Treppenhauers are taking back control of the year. We are all going to return it to the beautiful, soothing, joyful day that Simon entered the world. It started with Hanna and Emily holding him close immediately following the craziness of last week. It continued with our lovely virtual family gathering this morning. It will be finalized by Markus flying out to help him move out of his room at the house, followed by a long drive to San Francisco, where he will finish the school quarter in a home void of drugs and guns. He has a new plan to start next quarter by renting a house with an actual friend – one he knows and trusts. His positive attitude is back in force. The wise doctor was spot on in predicting Simon’s future adaptability. Simon was so smart to steer clear of the dangerous situation he was living in. Sometimes the bravest thing a person can do is to walk away from danger, risking the loss of friendships in favor of Life. He spent so much of the year persevering in the face of adversity but saw the wisdom in accepting help when the burden became too heavy. And that is where our family shines – sharing the burden. We are stronger together and are always there for each other. Happy Birthday, Simon the Survivor. We love you and can’t wait to see you again and welcome you Home.

Not a Fairy Tale

01 May 2019 Leave a comment

by Suelinhess in adventures, Breast Cancer, Communication, Family, Friendship, Healing, homemaking, hope, humor, illness, Love, Marriage, parenting, relationships, support, Uncategorized Tags: anniversary, counseling, family, happiness, health, humor, humour, husband, Life, Love, Marriage, relationships, sickness, survival

Marriage is not a fairy tale. You start out full of hope – he makes you laugh. You think your love will conquer all, that love is all you need, and you’ll live happily ever after. You are wrong.

Within your first year he still makes you laugh, but you realize those little things you found annoying but bearable, like dirty underwear on the floor or the toilet seat up when you sit down to pee, are not so bearable while your bum is falling into the ice-cold toilet bowl in the middle of the night. By the seventh year, your young children are pulling you both in all directions and demanding your time; and while you have joy and laughter, you’re both sleep-deprived and short-tempered at times. By the 10th year, most of the time you two spend in bed involves less sex, less laughter, and more arguing and snoring. One of you might begin thinking it would be much easier to start a new life, away from the sight of dirty dishes and piles of laundry, the sound of nagging, and the feeling that the love has weakened and perhaps this is how it will be for the rest of your life…maybe you should leave. If you’re lucky, you’ll hesitate for a day. If you’re luckier, you’ll remember the laughter and hold off for a few weeks. If you’re luckiest, you’ll decide to work through the hard times and seek out professional help to repair and rebuild. There will be tears. There will be arguments. The children will hear you raise your voices and will see you cry. You might wonder if things will ever go back to the way they were. They won’t.

But accepting that things will never be the same may become the beginning of something new. One night, out on a date assigned by the marriage counselor, instead of realizing that you’re looking across the table at a stranger and getting a sinking feeling in your heart, you might realize you’re sitting across the table from a stranger and feel a quickening in your heart – who is this person and what are they thinking? What are their interests and what do they dream about? Do your interests and dreams align? You’ll find new things to make you smile and eventually laugh. Since this person is new to you, you’ll search for novel ways to entertain him. He will do the same. Because you’re both strangers, you’ll be polite. You’ll speak carefully and try to be considerate of his feelings. Sometimes you’ll remember sad times or past anger and it will boil over into confrontation, but you’ll both want to hold on to the new pleasure in your new lives, so you will start over. A year will pass and the new you will feel more secure. Your children will see you holding hands and having conversations. They will see you supporting each other and working to keep the family healthy.

By the 15th year, just when things are going great, your marital issues might take a back burner to the emerging teenager issues in your children. After butting heads with teenaged fury, you might turn to each other and find strength and solidarity. More importantly, he still finds ways to make you laugh and you hope that this stage will eventually pass. You both realize that you must take great care to nurture your relationship so you can both see this through and come out on the other side still holding hands.

Three months before your 18th wedding anniversary, you might find a lump in your breast. Suddenly you’re faced with losing everything. You look back and recognize that every moment you spent with him, even the painful ones, were precious. You feel desperate to live so you can have more of those moments. So, you fight. You fight crippling fear. And he is there next to you, holding your hand, making you laugh, helping you fight through the pain. He is with you as you both fight for your life. And when you have no more strength or hope, he gives you his. Each surgery becomes less fearful. Each time you wake up in a hospital, he is there with a cool cloth for your forehead and kisses for the rest of you. He reassures you that you’re beautiful inside and out, no matter what happens to your body. And he can’t help himself – he makes you laugh. You laugh until your stitches hurt, you laugh through your tears, and you laugh until you are healed.

In the second decade of your marriage, you could find yourself embarking on a new journey. You’ve given half of your life to your children and it’s time to take care of yourself. Your dream is big, and you know there will be sacrifices. You go back to school. You begin to feel a sense of déjà vu as dinners fall by the wayside and laundry starts piling up. The arguing begins and you wonder if maybe this time around things may not end well. You remember his unhappiness earlier in the marriage, when times were tough and he wanted to escape, and you’re filled with dread. What you don’t remember is that he’s not the same man you married. Time has changed him into a man who wants what’s best for you and the decades have forged in him a strength of character that would make sure your dreams come true. To your delight, he rolls up his sleeves and folds the laundry. Every time you turn around there are fresh flowers in a vase on your desk and handwritten loving post-its stuck on your computer. To your amazement, he’s a fantastic chef and he brings you your dinner while you are studying at your desk, many times accompanied by glasses of champagne. And to your astonishment, he considers it reasonable to contemplate a time in the near future when you will attend graduate school in a different town when you might have to drive several hours just to steal a weekend with each other. His exciting plans to sneak away from the house and race through the night have you giggling like you’ve just started dating.

Marriage is not a fairy tale. You start out full of hope – he makes you laugh. You think your love will conquer all, that love is all you need, and you’ll live happily ever after. You’re wrong. The prince doesn’t wake the princess with a simple kiss, he shakes her awake and she’s grumpy and she might have bad breath and she doesn’t know his name and they have to take time to get to know each other and maybe just maybe they have a chance to truly fall into genuine love. Even then, they don’t immediately go riding off into the sunset without a care in the world. First, they must fight through a wall of thorns, side-by-side, bleeding and crying. Love doesn’t fight thorns. Willpower, grit, and patience get you through that. There might be dragons to slay and fire to fight. Love doesn’t help you fight dragons, courage does. What love does is fuel all of that willpower, grit, patience, and courage. Love is not the How, it’s the Why. Only after all of that, scarred and older, do the prince and princess have a chance for a ride into the sunset and a happy ending. Marriage isn’t a simple fairy tale, it’s an epic legend.

Happy 23rd Anniversary, Markus. I love you!

Just a Spoonful of Sugar

20 Feb 2019 Leave a comment

by Suelinhess in Breast Cancer, Cancer, Healing, hope, Love, support, Uncategorized, Valentine's Day Tags: breast cancer, cancer, family, flowers, humour, Life, Love, Medical, resilience, survival, Survivor

It’s been a while since I’ve had a chance to sit down and write. What better time than when procrastinating the night before a midterm?

The dreaded Shitty Anniversary has come and gone, of Valentine’s day in 2014 when I discovered a lump in my right breast. It’s a private scary anniversary that I usually don’t share with anyone else because it was just my lump (remember we named it Barnard? HA) and me in the shower alone, that morning, and there really isn’t anything to celebrate. I mean, I guess I could buy myself some chocolates, or better yet, cheese to mark the occasion…

Funny thing, though, this year I actually forgot. Do you know how buzzingly amazing that feels, to realize that I accidentally sailed through the day without a dark thought in my head? In fact, I was just coming off an all-nighter, heading to bed at 5am after working on a research proposal for one of my classes, when I bumped into my furry man who had an armful of red roses and a sweet arts and craft project he had made with his own hands (and his hands bore proof of his battle with the glue-gun – just covered in dried strings of glue). I was woozy from sleep-deprivation and so bowled over with love that I didn’t take the usual moment to link Valentine’s Day with Doomsday 2014. And for the rest of the day, I was either sleeping or running around for my night class; just too busy to think about anything else. fullsizeoutput_76fe Maybe because we decided to celebrate our romantic dinner that weekend due to work and school or maybe because life seems so full and busy now that I don’t have the time to ruminate…whatever the reason, I never connected my bad memory to my new reality this year. That is, I didn’t connect them until tonight.

I’m taking a health psychology class and every week we cover health issues that have some kind of psychosocial aspect to the preventative, treatment, and post-treatment sides of care. Last week we studied substance abuse and addiction and I didn’t really feel a connection, even though I was a child of two chain-smoking parents for 18 years. Cigarette smoking makes me angry and being a hostage to second-hand smoke didn’t do much to contribute constructively to my discussion that week. This week we are studying cancer and other chronic life-threatening illnesses. My assignment tonight? I posted it below. It’s an informal assignment posted to our discussion board online, so we are free to personalize. The page numbers in parentheses are references to our text, please excuse them. Writing this little post for class brought back some bad memories that brought a lump to my throat. The difference this year is that the bad memories feel so far away as to be almost blurred by time. I’m so glad I took the time to record what I was feeling as I lived through that journey – it’s good for me to re-read it sometimes to remind myself that I’ve still got that strength within me. GANBARU, Friends. And I give thanks for the sweet return of the true meaning of Valentine’s day.

Chapter 11, Question 3: Use what you have learned in this chapter to write a checklist about positive ways in which people have learned how to cope with cancer. This checklist could be a valuable resource for someone you know (or even for yourself) one day.

Be your own best advocate and strengthen yourself with knowledge. Read about your specific cancer, making sure to use your critical thinking and using .gov, .org, reputable websites for information. Www.cancer.org (Links to an external site.)and www.cancer.gov (Links to an external site.)are both excellent sources of information and have links to support groups and forums where you can meet others in similar situations. As a supplement to your local support system, this can be a great way to pass the time when you are up all night worrying about what’s next (p.340).
Be informed about your treatment options and don’t be afraid to ask your doctors and nurses to explain anything you don’t understand. If you learn as much as you can before doctor visits, discussing treatment plans won’t feel as overwhelming and you will feel less helpless and more in control (p. 339). Cancer might have control of part of you, but you have control of choosing many different ways to kick its ass.
If you have many friends and members of your family offering their “thoughts and prayers” and asking you what they can do to help, swallow your pride and honestly tell them what you need, even if it’s help picking up the kids from school or lugging heavy baskets of laundry in your house. If you’re lucky, your social support will include genuine people who just need you to tell them what you need – sometimes that is simply the comfort of having them come with you to your doctor appointments. If you have a significant other, include that person from the very beginning of your journey – be honest about how you feel while remembering they may be as, if not more, scared as you are. You’ll be stronger if you can lean on each other (p.340).
If your cancer treatments do not include mental health therapy, ask for referrals to a therapist who is experienced with helping recently diagnosed patients with traumatic diseases. Your emotional intelligence is a major factor in your survival (p. 336). If you aren’t already self-aware and able to regulate your emotions in a healthy manner, it is important that you find an expert who can help you learn. If they offer guided imagery and mindfulness-based stress-reduction strategies, take them up on their offer – they can go a long way towards improving your quality of life (p. 341).
Don’t forget to eat well and to be as physically active as you are able. Your body is fighting its biggest battle and it needs the fuel and the strength to win. The protein, fruits, and vegetables will help you heal after surgery and the exercise will keep your heart strong while helping to combat depression and anxiety (p. 178). But remember, as well, that your body also needs rest to fight and heal. Don’t be embarrassed to admit you might need to nap or that you are tired and would like to just sit and do what makes you happy.
There are going to be many times when you will feel overwhelmed and anxious. The American Cancer Society has a hotline open 24/7, manned with supportive people who can find resources for you and help you cope. 1-800-227-2345
Not everyone has friends and family who live close by. It can be some of the more tiring parts of dealing with cancer, trying to field all the well-wishing phone calls and emails asking for updates on your progress. I kept in touch with mine by blogging my journey (suelinhess.com (Links to an external site.)). As I faced the unknown, fought through the ugly realities of several surgeries, and even when I passed the danger and found good health, my writing helped me. It can be cathartic, pouring out fear or grief (p.342). After a short time, I began to find things to laugh about on the journey, and my stories became lighter and more hopeful. In the end, seven of my friends reached out to me separately, to let me know that through reading my story they were compelled to go in for their own mammograms. Four of them found very early stage breast cancer or DCIS (early stage growth that can possibly develop into carcinoma) and only had to have minimally invasive treatments to beat their cancer. Helping myself ended up spreading awareness and helping others – it made me feel stronger and encouraged me to continue pushing forward. This kept my attitude positive and may have helped me increase my post-traumatic growth (p. 338).

Walking and Loving Each Other Toward a Cure

09 May 2015 Leave a comment

by Suelinhess in Breast Cancer, Cancer, confidence, Faith, Family, Friendship, Healing, Love Tags: breast cancer, breast reconstruction, cancer, chemotherapy, hot flashes, hysterectomy, Relay For Life

I wrote this 7 years before my own diagnosis, while we lived in Hawaii. It still feels good to remember. And it feels good to have such loving friends who mustered up a team to walk together in Calgary, in my name, last year. Whether we find a cure or not, this togetherness and love is always a good thing:

Saturday, March 17, 2007, I forgot many things. I forgot my nephew’s birthday, I forgot it was St. Patrick’s Day, I forgot it was my husband’s only day off, I forgot myself. The only thing I could remember was that I was going to try something very important that day – I was going to try to stay up from 6pm until 6am on Sunday, and to walk in memory of Mom, to walk in support of Aunt Barbie, Doreen, Debbie, Jon, and all the other cancer survivors being helped by the American Cancer Society.

My friend, Doreen, just finished her chemotherapy for breast cancer. She is blessed in many ways: that she has a huge family on this island, that they surround her with love, that she received support and education from the American Cancer Society during her diagnosis and subsequent treatment, and that she is STRONGER than her cancer. Her family decided to form a team for the American Cancer Society’s Relay For Life. They used Doreen’s middle name for the team: KA’ILILAUOKEKOA’OKALANI. In Hawaiian, this name means “The Heavenly and Precious One.” If you ever had a chance to meet this warm, loving woman, you would understand how fitting that name is. She has over a hundred relatives on this island, hundreds of friends, has a demanding job as the Director of Human Resources at the Fairmont Orchid Resort, and a husband and three children, yet anytime you have a chance to speak with her, she seems to slow down the spin of the planet so she can spend time with you and give you her total attention.

Cancer really threw things off balance for Doreen – all of a sudden she had something in her life that she couldn’t approach in her usual way. Her usual way is to handle things almost single-handedly, to open another section of her heart and make room for one more thing, for one more cause. This time, she realized that it would take all her strength to fight the cancer. All of us around her, accustomed to leaning on her, had to adjust and ask her to lean on us. Her incredible husband and children, after years of Doreen taking care of them, stepped right into their new shoes with such grace and strength – more blessings for Doreen. And Doreen’s extended family – wow. I feel so awkward and happy at the same time when I am with them because I am not blood-related, and come from a smaller family, yet I always yearned for such a bustling, crazy, laughing family such as hers. It reminds me of childhood visits to Taiwan – aunties and uncles, cousins, sisters, brothers, everyone talking and laughing at the same time, playful teasing, drinking, eating, the closest arms grabbing and comforting any crying babies… To be included on her team was such an honor!

On Saturday night, as we all gathered in Kamehameha Park for the 10th Annual Relay for Life in Kohala, I looked around a sea of light blue Team Ka’ililauokekoa’okalani t-shirts, and realized that Doreen had the largest team! With her family, her husband’s (Malone) family, her best friend’s family, and mine, our team came to about 75 people. Doreen’s shirt was purple – all the survivors wore purple shirts. She topped off her outfit with a black-and-white polka-dotted bandana and a great big smile. As part of the opening ceremony, the survivors took the first lap – it was heartwarming to see them smiling and walking with their arms around each other. The “track” was set in a large green field, surrounded by huge, feathery trees that swayed in the gentle wind. Little white paper bags marked the boundaries of the track, with a set of bags spelling out the word “HOPE” in the middle of the field. These were luminarias that people could buy in memory or in support of loved ones. Markus, Emmy, Hanna, Simon, and I bought a candle each for Mom, Aunt Barby, Doreen, Debbie, and Jon. With Doreen’s family candles, we ended up taking up a large part of the circle. Our team was so big we were given two batons to walk with (we were called K Ohana Team I and K Ohana Team II). While those who held the batons walked, the others strolled around the track, visited with family under the series of tents erected for our team, ate our potluck dinner, danced to the live band, browsed the booths, and set up camp. The children ran around like crazy people and played on the playground. Markus and I held hands and talked while we walked around the track in the beginning – that was our date night Later in the evening, the stadium lights were dimmed and the Luminaria Ceremony began. The candles we had purchased to honor our loved ones, were blessed and lit and we carried them to the little white bags we had marked with our loved ones’ names. Call me crazy, but Mom was there. I carried her spirit to that little white bag, and her candle stayed lit until I blew it out in the morning. And it rained – it poured. Only Mom’s and Jon’s candles stayed lit. One of the Uncles and I re-lit our candles whenever they blew out, but we never had to worry about “Nai-Nai” and Uncle Jon. After Markus and the kids went to sleep, and I began to walk in earnest, with the baton in my hand, those little lit baggies kept me going. I would circle the track, reading the messages that different people wrote on their bags.

Through the rain, we kept walking. I purposely didn’t wear a watch – only wore Mom’s wedding ring. I didn’t want to keep track of the time in minutes, I wanted to keep track with memories. So I don’t remember what time it was that I walked my first set of 25 laps, and I don’t remember how long it took me – I was only able to mark the laps with the little rubber bands that the nice old man getting wet in the rain gave me. Every time I passed him, I would hold out my baton, he would snap on the rubber band, I would smile and say “thank-you” and be on my way. And I don’t know what time it was when I was waiting for a team member to finish her walk so I could walk again, and it was raining, and I sat next to Doreen under a watertight tent. She was all snuggled up in a warm blanket, on a sea of pillows on top of a cot. We watched her elderly parents walking side by side, slowly around the track, never faltering, walking for the love of Doreen. With tired eyes, she smiled and told me lovely things about her family, and about her husband and daughters, while her mischievous son snuck his way onto the cot, like a dog at the end of the bed. She told me about her treatment, her upcoming operation to remove her uterus, and how her hot flashes come at such un-opportune times like in meetings with the hotel General Manager…and how she would have the urge to rip off her hat or scarf, but didn’t want to shock the poor man with her bald head. And as we speak, she has another hot flash, and looks so uncomfortable there with her wooly hat on. I told her to take it off and cool down, that I think she is beautiful without hair. So she shyly takes off her hat, and she is just that – beautiful. I don’t know what time it was, but she was eventually tucked in by one of her sisters, and went to sleep. I nervously made my way to the outer tent, where her husband and the other hardier folks were staying awake. They are joking and laughing, speaking so quickly in the local style, so I can only understand half of what is being said. They are very kind, though, and offered me a Nos – an energy drink. Woo! That is when I ran off to do my next set of 25 laps.

It rained on and off throughout the night. We were constantly either taking off or putting on our little ponchos. I finally got kind of sick of that, so I just walked through the occasional showers – it was refreshing. Somewhere along the way, I was in the middle of my 3rd set of 25 laps, when I found myself really slowing down- my hips started creaking…. Sleep deprivation…Malone was a few yards ahead of me…I had been passing people with my speed walking all night long, so I thought I could pass him with no problem. Ha. I never caught up with him Then, Doreen woke up – someone told me it was about 5am, and that the closing ceremony should be beginning, with awards, and the final lap. Doreen took the baton and walked a long time with her sister-in-law. Slowly, but surely, she and her fuzzy white hat made their way around that track – I lost count how many times she went around – it looked like she was having a nice long talk with Malone’s sister.

Finally, we were all called to the main tent, and awards were handed out – so many I can’t remember. Best costume, most money raised, team that walked the most, individuals who walked the most…I actually won something! I walked 60 laps, the most on K Ohana Team II. Woohoo! One lady raised about $14,000! Including donations I expect in the mail, I raised about $400. Humble beginnings. I hope to double that next year.

Finally, we all stumbled out of the main tent, to do our final lap, and found ourselves greeting the sunrise. By then, things felt very strange and fuzzy…I don’t know if it was the good feeling in my heart, or the lack of sleep, but I left with the determination to do this every year. When my mom got sick years ago, I was a selfish teenager. When she got sick again, I was a selfish adult. I did next-to-nothing for her. All my good intentions amounted to little more than a few trips to chemotherapy with her, a few visits to her house, and in the end, long letters sent from my home in Hawaii. When my friend Debbie got sick, I prayed for her, but she lived down the street from me, and I still did nothing to help. When my friend Jon got sick, I prayed for him, I took care of his children or his dog while my friend Georgie, his wife, flew to Honolulu to be with him for his treatment, but that only happened a couple of times, and they live right next door. When Doreen got sick, I vowed to do more, to make a difference in her life, to be there to help her to the doctor, or cook for her, or whatever she needed. I only ended up taking her to the doctor once, I never cooked, and I never cleaned. I asked myself, when am I ever going to grow up and do what I say? When am I ever going to do more than talk or write? On Saturday, for the first time in my life, I feel like I made a real difference in the world. It looks so stupid in writing when it is on this piece of paper, but even though that $400 was just a drop in the bucket when you look at the $25,000 price tag for one chemotherapy treatment, my presence did something. All of us gathered on that grass on Saturday night, we put something out there in the world – a pulse of love so great – it was felt by others. I saw it in Doreen’s eyes as she slowly looked around her and saw the warm hearts all gathered in one place for the love of her. I saw it through the filter of my own tears as we lit our Luminaria and thought about our mothers, fathers, sisters, brothers, aunts, uncles, friends – it was on each of our faces as we quietly walked around and around.

It has been days since we walked together. When I came home, I slept for a whole day, not speaking except to help the kids with the essentials. I found myself not able to express myself – it was as if those 12 hours had taken more than my physical strength. I could only remember the night inside of my head, couldn’t talk about it, almost as if the memories were too precious to let them escape from my lips. This morning, I realized that if I didn’t take the time to write this, to share this, I would be doing what I have done all my life – I would have all the good intentions of helping without actually putting those thoughts into action. I can’t do that anymore. I need to share this experience with everyone, because it is important. I know it is annoying for people to ask for money to help causes. I felt the same way. I don’t expect my efforts to cure cancer. But the American Cancer Society does more than fund cancer research. They help the victims with the cost of medicines, with the cost of transportation; with loving counseling for the victims and their families…these are things that anyone might need someday. Nobody is expecting a huge donation. We are all regular people with other needs in our lives. But a good friend with a newborn baby managed to send $20. Just the action of finding an envelope and stamp and putting that together is huge, considering our E-society. And Simon, my little boy, age 6, earned $3 helping me with laundry, and put it into my donation box, instead of his piggy bank. Markus’ family in Germany sent actual Euros in an envelope – the bills just fluttered out when I opened the letter. My big sister couldn’t wire money from Australia, so she sent it via PayPal. So resourceful, these people with loving hearts and active intentions. And my next-door-neighbor? The friend who I didn’t have the wherewithal to help? His family walked over a check for $100. My best friend, over the ocean, whose own Mom died of cancer, sent me a donation in honor of both of our moms.

As for me, I am sure I will continue to be lazy when it comes to putting my good intentions into action. I am sure I will make everyday commitments and fail in some way. I am sure I will continue to procrastinate when it comes to doing what I must. But in one way I have been changed forever. The love that was shared on Saturday night, by Doreen and her family, by the cancer survivors, and by their supporters, that is permanently in my heart. That love makes me stronger – it strengthens my resolve. I am going to continue to help. Even if I don’t have a lot of money to donate, I will donate my time. I will walk again. Next year, I hope the team is even bigger. And if any of you are able to make it, I hope you will walk with me. Do it for someone you love, do it for someone you don’t even know. Just don’t forget to do something, no matter how small.

How Blessed to Have an Uneventful Day Together

01 May 2015 3 Comments

by Suelinhess in adventures, Breast Cancer, Cancer, Family, illness, Love, Marriage, relationships Tags: cancer, family, Love, Marriage, relationships

Don’t give me fancy flowers. If I never have another rose, I won’t be sad. Don’t give me chocolates or romantic dinners in gourmet restaurants. For the rest of my life, if I never eat another chocolate or attend a gala dinner, I could still be happy. All I want is his warm hand holding mine as we walk down our path together. All I want is for him to take my face into his hands and pour all his love from his eyes into mine. I like to think that he was molded up in Heaven while I was a lonely little girl, staring up at the stars at night, wishing to find a family that would love me the way I love them. But he was already running around in his lederhosen by then, growing up all the way across the world, in the mountains.

I used to take our time for granted. Weekends sometimes felt a little boring, sleeping in, reading quietly, making dinner together, working in the garden. I used to think maybe my life was too quiet, too uneventful. Then we got a little shake up with that cancer thing last year, and we found ourselves wishing for boring, wishing for a worry-free life. Last year’s wedding anniversary was a “I’m alive! We made it! Yay!” anniversary, where we just clung to each other, grateful for the chance. Today, we have had a whole year of enjoying every day, a whole year of savouring just sitting on the back porch together, in the sunshine, listening to the quiet breezes drift through the forest. We learned how to fish, we went camping, we took long wandering walks in the woods. This has been a year of deep content. I am truly thankful.

But I want more. With your favourite food, you crave it until you overindulge and then can’t even stand the smell of it. With your favourite music, you play it until you get sick of it. Everything in my life to this moment has been that way. Except this love. This love has made us work hard for 19 years, but the joy and passion we create is ambrosia. Through tears, through frustrations, through misunderstandings, we learned how to be good people, to be kind to each other. And as each year passed, our roots went deeper, intertwining. Our union has produced 3 of the most beautiful precious beings we could ever give to the world. And our struggles, from petty things like snoring, to having serious talks about how one parent might have to go on without the other…raising children alone…those struggles have shown our children that love is everything. Love isn’t just flowers or romantic dinners once a year. Love is every day. Love is putting in earplugs if the snoring is too bad. Love is taking out the garbage. Love is taking turns being the soft parent when the other has to be the hard parent. Love is admitting when we are wrong and apologizing. Love is in the cold washcloth gently wiping away the sweat and tears of pain. Love is never forgetting to tell each other how we are treasured…every day.

So I have it, this love. I am fully aware of how rare it is, how most people may never find just the right person, or just the right way to dance with that person. I know we earned this happiness; it didn’t just fall into our laps. We earn it every day. And just like from a well-tended garden, our love is wonderful produce. There is no more taking for granted. Each minute slows so we can savour it. I take photographs so I can look back and remember that sunny day better, the smiles in the photo bringing me to to that very moment. Having this love comes with insecurity, worry over the future. I see the silver coming into his hair, I hold my breath before my 6month wellness checkups; I have daily reminders that it won’t last forever. Then, my blood tests come back clean and we celebrate. Or he earns a promotion and we celebrate. Or it’s just Friday and we celebrate.

Today is a special day. 19 years ago, on a pristine beach in Carmel, flanked by baby Emily on one side, and the most handsome groom I could ever imagine on my other side, I didn’t think I could ever have a happier moment for the rest of my life. Never have I ever been so glad to be wrong. Time has softened us, has greyed and wrinkled us. But that man I married has transformed into a man that glows from within. He is so beautiful my heart hurts. Sometimes I feel his eyes on me, and I look up to find the love shining from him, so palpable I feel I could reach out and hold it in my hands.

On Sunday, Markus flies away to Seattle to begin his new job. The kids and I are staying behind while they finish school. I struggle with the pride I feel for the rewards he has earned from his hard work, while I am already missing him so much my heart hurts. We are each other’s touchstone. When the outside world is too harsh, we turn to each other and there is comfort. When there are times to celebrate, we turn to each other for the big hugs and the jumping up and down. No matter what the situation, we turn to each other. For 22 days, we are going to have to settle for some virtual hugs and love through Facetime and emails. Between now and Sunday, I will be giving him kisses for him to keep in storage. Today won’t have fireworks or chocolates or flowers, it will be even better than that. Today will be pure love; just cherishing the quiet reading, holding hands, walking the dog, and whatever else a perfectly uneventful day will bring. Happy Anniversary to my Love. May we always be hungry for more.

Signs of Life (Ch. 8)

07 Jun 2014 4 Comments

by Suelinhess in Breast Cancer, Cancer, Faith, Family, Friendship, Healing, humor, illness, Love, Medical, Roman Catholic, support, Travel, Uncategorized Tags: breast cancer, cancer, Christianity, Death, endurance, faith, family, Friendship, Good, healing, humour, illness, Life, Love, recuperation, Religion, spring, Summer, support, survival, Survivor

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!

What Not to Wear (Ch.5)

14 Apr 2014 4 Comments

by Suelinhess in adventures, Bitching & Moaning, Breast Cancer, Cancer, confidence, Faith, Family, Friendship, Healing, humor, illness, Love, Marriage, Medical, self reliance, support, Uncategorized Tags: breast cancer, cancer, fear, healing, hospital, humour, illness, laughter, Love, pain, plastic surgery, recovery, surgery

Tomorrow is Bodacious Ta-Ta Tuesday. And I thought having babies required planning and organization…ha. So far, I have 3 surgeons, 1 anesthesiologist, countless residents and nurses, and one hovering furry man on my Away Team, here in Edmonton. On the Home Team in Jasper, we have our 21 year old daughter Emily as Captain, and Hanna and Simon on Defense. They’re holding down the fort, feeding the dogs, going to school, doing their chores, and trying not to fight with each other while they wait for us to come home next week. And for Home Team support, we have Coach Aunty Lori and Uncle Rob driving 4 hours from Banff to bring Easter and home cooking to our kids this weekend. My freezer is stocked with labeled tupperware full of food I cooked for the Home Team, my hospital suitcase is packed, my furry man has a stocked mini-fridge in the hotel room, and all we had was a pre-admission clinic and a pre-op consultation to attend today. I thought I had prepared myself for everything. Little did I know that fashion actually matters in such a situation. There is such a thing as what not to wear to the plastic surgeon’s office on the day before your planned surgery. Consider this a learning moment for you.

The 4 hour drive from Jasper was the usual scream. This time, though, we broke up the trip with a stop at Tim Horton’s in Edson (for those of you planning on exploring beautiful Alberta, Edson can be skipped. Unless you need to pee or need some coffee at Timmy’s. Seriously). I splurged on a honey-glazed donut. Best 15 minutes of the entire trip. I figured, if there is any time to indulge in my life, this is it. I am going to lose 15lbs worth of boobs tomorrow – one glazed donut is nuthin’!

Back at the Mac (the elegant Fairmont Hotel MacDonald) we got our usual room 538 with a river view and the extra mini-fridge that Markus had requested. He’ll be living here while I am luxuriating in the fabulous Misericordia Hospital all week. Visiting hours are 9am – 9pm and he’ll be coming back to his room for delicious bowls of cereal on many an occasion. We went to bed, but I tossed and turned all night long, thoughts just piling up in my head. I had go to my bedside table and make notes in my phone just to empty out some of those thoughts. I really wanted to sit up and write everything down in full form, but didn’t want the scolding from the furry man. I forced myself to keep my eyes closed, and waited for the sun to rise.

This morning we had an appointment for a pre-admission clinic at 8:30, so we drove to the hospital. I thought this would be a quick meet and greet with my little Dr. Ing from my sentinel node surgery. Nope. A gangly man in full scrubs shuffled into the room, mumbled that he was Dr. Xanadu, and plopped a giant binder on the table. The giant binder was me. Every little detail from every doctor and nurse, leading up to this moment, was in that binder. We spent some time talking about meds, but most of what he was saying kind of went in one ear and out the other…Dr. Xanadu?!!! There was no way I was that lucky. He left the room, and I whispered to Markus, “REALLY?!” Markus was like, “I KNOW! Is that a real name?!” I replied, “I fully expect him to enter the operating room on roller skates, singing like Olivia Newton John tomorrow!” Then another nurse entered and shattered our fantasies when she asked, “Did Dr. Nadu take all your meds?” Damn. You know I’ll be humming Xanadu when they wheel me in tomorrow…

OH, learn to read upside-down, ladies! While the nurse (Peggy) was going over my binder and prepping me for admission, I happened to read a letter from my internist, Dr. Hossein, to my general surgeon. He remarked that the cancer is in my left breast, and that my sentinel node surgery would consequently be in my left breast. STOP! I have breast cancer in my RIGHT breast and had sentinel node surgery in my RIGHT armpit. MORON. I remember during that particular doctor visit (to discuss whether my current meds would cause trouble during surgery), wondering why he wouldn’t make eye contact and why he was such a pig. His desk looked like the messy room of my teenage daughter. The only thing missing was old cheese and oranges tucked into his underwear drawer…I mentioned this to the nurse, wondering if his untidiness was an indication of his carelessness in noting important medical details on my record. She replied that she had heard similar things about him and just shook her head. So be your own best advocate and know your diagnosis inside and out, ladies. And maybe don’t go see Dr. Hossein, if you can help it.

During the pre-admission clinic, Nurse Peggy went into my hospital visit in great detail. We got to meet the little Jackson Pratt drain that I will have hanging from my breasts, my armpits, and my abdomen. She taught us how we will be draining them and measuring and logging the (gag) fluids that will collect in them. The drains look like the plastic tubing that you use to aerate your fish tanks at home. At the end of the tubing (the other end is stitched into your body) is a soft clear rubber bulb, where the fluid will collect. It’s about the size of the bulb they use to pump up a blood pressure cuff. There is a loop on the bulb, and it gets pinned to the hospital gown. Fancy hospital jewelry.

Following that appointment, my honey and I had a romantic lunch in the West Edmonton Mall. Hey, not everything has to be roses and candlelight. When a mall lunch is followed by a restful nap in a Fairmont bed, snuggled against a warm chest, wrapped in loving arms, I challenge anyone to claim that wasn’t romantic.

At 2:30pm, I called the surgery appointment desk to find out my surgery time for tomorrow. I was asked, “Who is your doctor?” I replied, “I have multiple doctors: Olson, Schembri, and Mehling.” She exclaimed, “OOOHHHHH, you must be Sue!” My cousin Gaby always teases me when I’m at home when I visit the hotel for something and I try to blend into anonymity, not wanting to use Markus’ job for asking favours. She puffs up and puts on a royal voice, “Don’t they know who you ARE?! You need to say, ‘Don’t you know who I AM???!!’” and then we all dissolve into silly giggles. Well, it seems Gaby called ahead to the Misericordia Hospital… The nurse said, “Sue Treppenhauer? You’re going to be our first patient and the big one all day. Come on in at 5:45, honey.” At least there won’t be any rush-hour traffic…

The last appointment of the day was for a visit to my plastic surgeon, Dr. Schembri (remember Dr. Scampi?). This was the first time my furry man was meeting him, and it didn’t occur to me how very awkward it would feel. First of all, I was handed a gown and a pair of very teeny tiny panties to change into, gown open in front. Then Dr. Schembri (the furry little boy who looked like he just graduated from university) came in wielding a blue Sharpie, and started drawing lines all over my breasts and abdomen. Then he started showing us (by tucking in my nipples and squeezing the breasts) how the lines would guide him in reforming my reconstructed breasts. A light went off in my head, and I was like, “HONEY, did you ever see Mad Magazine when you were a kid?” My German furry man looked at my quizzically. I had to explain how the back cover of the magazine had a picture that you had to fold a certain way, and if you did it just right, you ended up with a totally different picture. By the time I was done explaining, Dr. Schembri was laughing hard and nodding his head, “Yup! That’s exactly what I’m doing!” Then he had me lying down so he could draw more on my abdomen and do the whole grabbing-giant-handfuls-of-fat thing again. I can’t even imagine what my husband was thinking. After that, I had to stand up in just my teensy panties and subject myself to a photo shoot. Dr. Schembri swore he wouldn’t share them with anyone. Markus didn’t make the same promise, however. yikes. When I was allowed to wrap my dignity in my front-opening gown, we sat down for a talk. He explained to us that he would see me around 7am right before surgery, and my lumberjack would be there too. While Paul Bunyon was removing my breasts, Dr. Schembri and Dr. Mehling would be working on my abdomen, removing the tissue and blood vessels needed to reconnect to my chest. Once Dr. Olson had one breast removed, Dr. Schembri and Mehling would move up and begin connecting the blood vessels and working on that side of me. Then he stopped and looked at Markus and said, “Okay. I have to tell you. About halfway through all this, we will be taking a break to have lunch. It’s going to be a long day, and we will need some food. I’m only telling you this because I neglected to say it with another patient years ago, and I bumped into the husband while I was in the cafeteria. He looked at me in a panic and was like, ‘Wait. Who is working on my WIFE!!!’ If you see me in the cafeteria, Markus, I promise Sue will be ok. I just need to get some nourishment. She will be being taken care of, I promise.” You never really think about that stuff, do you? Finally, Dr. Schembri handed a blue Sharpie to my furry man, and asked him if he wouldn’t mind going over the lines after I take a shower in the morning, in case I washed anything off. He has no idea what a stupid move that was. It took everything in me to convince my furry man not to draw on me last night, before going into the office today. He wanted to draw smiley goodbye faces on my breasts. Now that he’s had to sit through watching a furry teenager-looking-man squeezing bits of me that are Reserved for Treppenhauer Use Only, I wonder if I’m going to have No Trespassing written all over my boobs in the morning…

So here is where my fashion advice kicks in. For this last day before Bodacious Ta-Ta Tuesday, I had chosen to wear a v-neck blouse that showed my cleavage in all its glory. I figured my girls deserved one last day in the sun before going to Heaven tomorrow. That’s all very well and good, but if you expect to be covered in blue magic marker, you might not make a similar fashion choice. As soon as I put my shirt back on, Markus burst out laughing. I had what looked like a blue tree growing up on the skin of my chest, blooming out of my cleavage, just above the v in my v-neck shirt. There was no covering it up. We headed out to the parking lot, passing turning heads (“hmmm, interesting tattoo on that lady…”). We had planned on a quickie splurge on junk food for my Last Supper, so we walked into McDonald’s. Now, with all the freaking weirdos of the world eating at fast food joints, with tattooed and pierced faces, screaming babies, etc, you would think I would blend right it. Not. And they didn’t even stare inconspicuously. It was straight on ogling. I was so embarrassed, I sat in the only booth facing a wall, waiting for Markus to bring our deliciously salty french fries and my chocolate shake. With his crinkly eyes and laughing face in front of me, I could momentarily forget my appearance. On the way back to the car, I saw a few more heads turn, and pulled my sweater off and held it up against my chest. Markus opened the car door for me, then went around to sit in the driver’s seat. Driving back to the hotel, I held my sweater to my chest to cover up the blue markings, totally embarrassed by the funny looks people had given me, dreading walking through the hotel lobby. Markus turned to me with a fierce look on his face and said, “FUCK them. They don’t know how lucky they are to NOT have a reason to have the blue markings on their chests. Fuck. Them. Let them stare. I am proud of you.” Then he turned back to the steering wheel and drove me back to the comfort of our hotel room. In the elevator, he took one picture of me, after teasing me about my blue tattoo, telling me that I was going to want to remember the funny things. And a v-neck shirt for today was certainly funny, if not well-planned.

In the hotel room, I sat down to write this last entry for my blog, before I meet fabulously new drugs tomorrow. You might not hear from me for days, even though I know Markus will update my friends and family on Facebook. The hospital nurse told me that the powerful anesthetic would alter my senses and my judgement for days. She cautioned me against making any important decisions on legal matters, and I’m guessing writing my blog might fall under that warning. While I was plugged into my writing music and I was swimming in my words, seated in our hotel room easy chair, I saw a movement at the edge of my field of vision. I looked up to find my furry man with a shy smile on his face, standing there shirtless, with my identical blue Sharpie markings all over his chest. Solidarity at its finest. What is love? Love is coaxing someone to laugh through the fear of becoming Frankenstein. Love is being there to relieve pain. Love is furry. And right now, while my heart is brimming over with it, I will bid you goodnight. It’s time to cup my breasts and to say thank you for a wonderful 30+ years of life-giving nourishment, of sex appeal, of giving comfort, and Love. Tomorrow is Bodacious Ta-Ta Tuesday. And ByeBye Barnard; don’t let the door hit you in the ass on your way out.

Farewell, Brave Sentinel (Ch.4)

09 Apr 2014 Leave a comment

by Suelinhess in adventures, Bitching & Moaning, Breast Cancer, Cancer, confidence, Faith, Family, Friendship, Healing, humor, illness, Love, Marriage, Medical, self reliance, support, teenagers, Uncategorized Tags: breast cancer, cancer, courage, fears, healing, hospital, humour, illness, Love, pain, surgery

This was not going to be the Big Day. This was going to be a little bit of a big day, but not THE big day; that day (April 15th) I was going to call Bye Bye Boobies Day. On this day, April 3rd, I was only scheduled to have my sentinel node removed for biopsy from my right side. If there is cancer in the sentinel node, that would indicate that Barnard is in a travelling mood and on his way out of my breast and into the rest of my body. If that is the case, then I would need radiation treatment and I would not be able to get my breasts reconstructed for a period of time; I would only be able to have a double mastectomy on April 15th. Forget Flat Stanley, Flat Suzy Creamcheese would be the new star. For the procedure on April 3rd, they would first inject a radioactive contrast dye behind my right nipple and then they would go in with a baby geiger counter and see which lymph node got the most clicks out of the sensor. The loudest clicks signal the first lymph node that cancer would encounter on its journey out of my right breast, so that node is removed and biopsied to see if there are any cancer cells lurking. That first node is aptly named the Sentinel Node. Your sentinel nodes are the heroes in your body. They are the front line in your body’s fight against germs and other enemies of your health. Your lymph nodes do their best to fight the invaders and, at the very least, they send out signals to you that there is trouble about; they swell up. When your doctor feels under your ears, by your jaw, around the back of your neck…he’s checking if your lymph nodes are swollen. You can feel them yourself when you have a cold. Sometimes, the ones in your arm pits can be felt too. Your body is filled with them; an army on your side. So everyone on Team Suzy Creamcheese voted NO on Proposition Sentinel Node (cousin Gaby said this) and my furry man had been walking around for weeks, chanting, “Sentinel NO Sentinel NO!” No cancer in the lymph nodes means yes for reconstructive surgery. We want boobs in this house.

On April 2nd, we packed the car full of children on Spring Break (“WooHOO, let’s go to the hospital for Spring Break!”) and made the 4 hour drive to Edmonton. We tortured the kids with an audiobook – Under the Dome by Stephen King. It was narrated by this dreamy guy named Raúl Esparza. I fell in love with a new expression, “Well, I’ll be dipped in shit!” You have to say it with a drawl, in a shocked voice. I have a feeling I will be saying it a lot in the near future… I had to call between 2:30-8pm to get my surgery time for the next day. The booking desk is a well-oiled machine. When I called, they asked for my name and my doctor’s name, then they brightly told me, “First thing in the morning! Go get your contrast dye injection at Meadowlark Health Center, then head straight over to Misericordia Hospital Day Ward at 8:30!” The happy ending to my day was room service dinner at the Fairmont Hotel MacDonald in downtown Edmonton. No dishes give me sweet sweet dreams.

We brought our kids because they were on Spring Break and they would otherwise be home unsupervised. We wanted to give them a day of fun in the city while I was in hospital, but we also wanted to make sure the house would not burn down. Going to the city for doctors’ appointments on my own versus bringing the family is a shock to my system. Hanna packed all of the contents of her vanity table – about 20lbs of makeup. We actually argued with her about the makeup buffet that she had spread out over the hotel room floor and on the desk. She woke up at 6am to start getting ready, and by the time we were pushing to get out the door at 7:15, she was squealing about her hair not being “done.” Between her squealing, my husband’s scolding of the kids, and my son’s beatboxing (he wakes up making noise every day), I had no room to think about my day. It wasn’t until we were in the car on the way to the imaging office, that I thought about getting injected with radioactive contrast dye in my nipple; in my N.I.P.P.L.E.

No matter how I imagined it going down, I could not picture a scenario where the needle in the nipple would NOT hurt. Nobody I know had shared this experience with me, so I had no idea how to prepare. My furry man tried to keep it light and said he’d always fantasized about Rebecca Romijn as Mystique (the blue lady) in X-Men…and now he would get to sleep with his very own Mystique with glow-in-the-dark boobs…rowr. That silliness, and having the 2 kids there to put on brave smiles for, helped me to get through the waiting room time. Soon, they called my name and I was in the radiology room with a big blowsy blonde nurse, who gave me a regretful smile and said, “Honey, I’m not gonna lie. This is gonna hurt.” I was like, WHAAA? What happened to all the people soothing me and telling me happy things? Nope. Blondie was a realist, and it turns out I like it like that. I nervously asked, “But…don’t they give me a numbing shot first? Before the dye is injected?” She said, “Well, yeah, Dr. will freeze it first, but he shoots in the dye immediately after – sometimes the anesthetic just doesn’t have time to kick in…we’ll try to make it quick to get it over with.” I sighed and said, “Well, I guess I gave birth to 3 kids. I can do this.” She smacked me on the back and said, “THATTA GIRL.” And when the doctor walked into the room, she said, “HEY, Sue says she gave birth to 3 kids, so she can DO this. Let’s do this!” The doctor, a dark little gentleman with a hint of a moustache, who reminded me of my friend Sunil in high school (who has since shaved the little hint of a moustache and grown into a handsome bigger man with a spectacularly bald head…I love bald men…I digress…), smiled at me and said, “I will make this hurt as little as possible.” Blondie rolled her eyes at me and grabbed my hand and squeezed it. I asked if I could let go of her hand so I could pinch my left leg when the needle went in. It’s my stupid way of faking out my brain when I get anything involving a needle. I count to 3, and when the needle goes in, I pinch my leg as hard as I can. My brain yells, “OW” at my leg, and sometimes doesn’t really mind the needle. Blondie giggled, and said, “Of course! And hey, look at me for a minute.” I did, and while the doctor was doing his needlework and I hissed through the first injection, she gasped, “OH MY!!” I was like, “WHAT?!” And she gushed, “You have the whitest teeth I have ever seen! I wish my teeth were as white. My mom is a dental hygienist and tells me it’s all in the enamel, and some people are just blessed. Oh how I wish I was so blessed…” And on and on, she had me laughing, and before I knew it, she winked at me and said, “Guess what, you’re done.” What? What happened to the needle with the dye? “Oh honey, he did that a while back. What a great talk we had, eh?” Blondie was a sly thing. After I got dressed, she stopped me at the door and said, “I just want to give you a big hug and wish you all the luck on your procedure today. You have the right attitude and you are going to beat this.” Then she enveloped me in a huge soft hug and made me feel completely safe and confident. Ladies, if you can have such a perfectly orchestrated radioactive contrast dye injection, by equally-sly medical staff, it will be a piece of cake for you too.

After my nipple injection, I was told to head straight to the hospital Day Ward. A Sentinel Node biopsy is a relatively short operation. The actual cutting and removing of the node takes less than an hour. There are a couple of hours of recovery time (wakey wakey, cookie cakey) and they send you home with big bandaids and strict instructions. At the Day Ward, they told me the surgery had been changed to 12:30 and to come back in 2 hours. We were all starving for breakfast, but since I couldn’t eat and I wanted the kids to have some fun for the day, I decided to suit up and stay until surgery time. There was ample opportunity for Markus to take embarrassing pictures of me in my hospital gown and for the kids to be hugged and kissed and reassured. While the family waited in the waiting room for a few minutes, I was escorted across acres of cement floor to a large room with about 30 hospital beds separated by curtains. I was the first to arrive, so I got the nurse all to myself. I asked her name twice, but I still can only remember that it started with an M and was one of those names that parents thought they were being creative by adding letters to established names. Malexa? Malicia? I’ll just call her Nurse M. She gave me a thin cotton hospital gown, told me to remove all my clothes, put on the gown, and leave it open in the back Remove all my clothes? This was supposed to be a quickie day surgery on my armpit. Remove all my clothes? Yup. And for those of you who worry about being on your period, they sweetly give you a pair of disposable undies and a retro maxi pad from your mom’s stash in 1971; the kind that needs a belt…only they don’t provide a belt. To complement the lovely gown, they offer a hospital robe in similar shades of blue, and a fabulous pair of booties made of the same material as their surgery shower caps. Fully outfitted, I was ready for the runway. Big kisses and hugs goodbye to the worrying family, then the nurse sat down to explain the whole procedure and how I should expect to feel after the surgery. Basically, I was told I would probably feel like crap, and they would do everything in their power to reduce the level of crap for me before we drove home to Jasper. Not only would I feel nauseated with a sharp pain in my armpit, I would likely have a wicked sore throat because of the breathing tube that would be inserted. Oh, and did I have any loose teeth or dentures that might be knocked loose by the insertion of the breathing tube?

Waiting in Bed #17, I could eavesdrop on my fellow patients. My surgery was scheduled for 12:30 and it was 8:30 in the morning. I had some time to kill. The magazines were from 2005, and were Christmas issues. I flipped through them pretty quickly, ran down the battery on my phone from posting selfies of me in my glamorous hospital gown and slippers. This area was the staging area for surgery prep, and surgery recovery. By listening in, I could figure out who was in for what surgery. Men and women, mostly elderly, most of them had the same questions I had. By the time it was my time to be wheeled upstairs, I had the answers I needed. I never met a single one of my curtained neighbours, but I felt strangely connected. It was calming.

Here is where I confess my biggest fear of all. I had never had surgery before. My mother always had difficulty with general anesthesia, telling us (regarding her 2 caesarians, her lung cancer surgery, and her breast cancer surgery) “Oh it was terrible – the nurses couldn’t wake me up. I almost died. Every time it gets worse.” And when I went to stay with my father for his heart surgery a few years ago, I waited for hours as they transferred him into the ICU post-surgery, because they had so much trouble bringing him out of the anesthesia. Ever since I found out I had breast cancer, I have secretly been dreading an operation that required general anesthesia. What if I don’t wake up? What if I go under for a simple procedure, and I never had the chance to say goodbye properly to everyone that I love, never had the chance to tell my children that I am so proud of them and wish all their dreams will come true, never had the chance to tell my husband that I could thank him forever and it would never be enough, for our beautiful children and for our happy life? A couple of weeks ago, I was getting ready for bed, and it just overwhelmed me. Should I write letters? Should I say something now so I could tell my loved ones all the things I might never have a chance to say? If I did, wouldn’t it freak out my kids and make them worry needlessly? I was sure I was being foolish and needed to just shut my mouth and breathe through the anxiety. I came to bed, and my furry man immediately saw the worried look on my face and said, “What’s wrong? Tell me, honey.” I just blurted it out. All of it. And I bowed my head in shame for being so stupid and worrying about such a crazy thing. He grabbed me and hugged me so hard that I couldn’t breathe. He murmured into my ear, “I never knew you worried so much. You’re not being silly. But for all your brains and your ability to research and find information faster than anyone I know, why have you never looked this up? You have looked up everything there is to know about cancer but you’ve never checked this? I am sure medicine has improved since your mom had surgery 30 years ago, and your dad had alcohol the night before his surgery – I am sure there were good reasons for their problems. Let’s look it up right now. Let’s find out everything we can about this, ok? Information will make you feel stronger. And if you still feel worried about it after we research, you go ahead and write those letters. Just seal them and give them to me to give to the kids if necessary. If the worst happens, I promise you I will give your letters to the kids. If you wake up and everything is fine, we will just throw those letters away.” What a wise man my furry man is. We spent the next hour looking up everything we could find about general anesthesia and advances in the field to improve safety in the past few decades. It quelled the worst of my fears, but there was still an echo deep down in my heart of what if?…

So, while waiting nervously in Bed #17, all by myself, my silly mind took me to dark places. All the Facebooking in the world couldn’t distract me. As I thought about composing a quick email to Markus with letters to the kids, I got a text from my bright friend Kathy. Kathy is bright in all senses of the word. She is a tiny bundle of sunshine and fire; full of energy to run through life while juggling job, kids, friends, husband, and any challenge that comes her way. Her first response to my breast cancer announcement last month, was to say, “What can I do?” And feeling helpless in a town 4 hours away from me, she decided within a few minutes of hanging up the phone that day, that she would form a team for the CIBC Run For the Cure event in October of this year. By that evening, she had emailed and Facebooked everyone we knew, and we had a team of over 30 people signed up, from all over the world, to raise money for cancer research; all in my name. So a text from Kathy shone a little light into my dark mood. All she wrote was, “Why r u still on FB? Have you not gone in yet?” Immediately I thought, this is someone who can do what needs doing. I wrote back, “Hey, this is crazy, but if I don’t wake up, I love you. And please tell Markus and my kids that, a LOT, if I can’t. I think I’ve said it 100 times to them already. But I didn’t want the kids to worry so I just sent them to breakfast.” She replied, “I love you too!! You are going to be fine!!! It’s sentinel NO day!!! Positive energy!!! I can’t even imagine how you feel, but you are a strong woman and can conquer anything! You are determined!! You’re in a hospital 30 years later. You’ll be fine!” She talked me down from the ledge, and my sanity was restored (temporarily).

At 11am, Nurse M popped her head into my curtains and brightly announced, “Dr. Olson is ahead of schedule! You’re up!” No more time for fretting, I sent a quick text to Markus that I was going in, and he replied that he would be there when I came out. I put my phone and my glasses into my little bedside locker, and hopped onto Bed #17. I was given a pretty blue bonnet to tuck my hair into, told to lay back, and went for a wild and crazy ride as Bed #17 was pushed by my new friend Lola, to the operating rooms on the 2nd floor. Lola was a short, round asian woman, with rosy cheeks and a big smile; and every time I looked at her, I wanted to sing, “Oh my Lola, L-O-L-A!” but I didn’t know if she’d get it, so I bit my tongue. She was the first person to ask the Questions. Each new person I met had to ask me: “What is your procedure today, and on what side are we operating?” Sentinel Node Biopsy, Sir! Right breast, sir! They also asked me to spell my last name and to state my birthdate. I tried to keep track of how many people asked those questions, but when they got into the double digits, I stopped. A dozen recitations of T-r-e-p-p-e-n-h-a-u-e-r had me longing for my short little maiden name…

Barnard has pick-pocketed one more thing. I was supposed to have Lasik on my eyes for my birthday, so I would no longer be legally blind. It was going to be the highlight of my year. Imagine waking up in the morning and being able to see the expression on my husband’s face without having to reach for my glasses! Imagine swimming with my eyes open and actually seeing the line at the bottom of the pool! Then Barnard came along and I was told that since they would be taping my eyelids shut during my surgeries, they might accidentally put pressure on my eyes which could damage my repaired eyeballs. So here I am, blind as a bat, as usual. And the first thing they tell you to take off pre-surgery is your glasses. Most of my story happened in a blur. Literally.

Up on the 2nd floor, my Lola wheeled me into another large holding area where various other bedridden patients were waiting for their turns in the operating suites. I was beginning to notice that, other than the hospital personnel, I seemed to be the youngest patient around. Suzy Creamcheese; Spring Chicken. Before Lola left me to shuttle more patients, she told me to expect to wait about 20 minutes for the anesthesiologist and Dr. Olson to find me. 20 minutes of watching fuzzy green blobs rush around and attend skinny wrinkled blobs on beds. Very confusing. Suddenly, a few yards in front of my, one of the fuzzy green blobs crouches, shoots both of his index fingers at me, and booms, “HEEEYYYYYY, it’s my favourite American girl!” I figured it was safe to assume it was my own personal lumberjack Paul Bunyon/ Dr. Olson. Sure enough, he ran up to me, pumped my right hand and plopped a great big kiss on my forehead. “Doing ok? Great to see ya! One incision Sue, one incision. Sentinel node comes OUT and you wake up. We’ll have you up and running in no time. I’m going to hand you off to a great guy – Dr. Ing – he’ll be your anesthesiologist- give you the good stuff. I’m going to go scrub up – SEE YOU IN THERE!” And he was gone in a puff of smoke. All surgeons need to get this guy’s bedside manner. All of them.

Dr. Ing did, in fact, give me the good stuff. First, however, he had to inspect my teeth (what is it with their worries about my teeth? And more admiring comments about their whiteness – good promotional material for Crest Whitestrips: use Crest Whitestrips and have medical personnel oohing and ahhhing over your gleaming pearly whites pre-surgery!). Also, as he was inspecting my throat and inserting the IV and saline drip in my hand, I wondered: “are all anesthesiologists asian? and it’s a good thing I inherited the big ugly veins in my hands from both my mom and dad – they pop out just right for the needle. and how does someone want to grow up and become an anesthesiologist? and how do you say anesthesiologist without your tongue ending up in a knot?” That could have been the oxycodone doing the wondering…he really did give me the good stuff. They wheeled me through strawberry fields and down the hall, past a big clock that read 11:50am, to the operating room, where they had me tumble onto the operating table with my head kind of hanging over backwards, pulled out some boards for my arms, and had a good laugh when they asked me the Big Questions for the final time. Spelling my last name while incredibly high is very difficult; you try it some time. I panicked at the very last moment, when the guy by my left ear told me that what he was injecting into the IV was going to sting a little, while the guy by my right ear pressed a mask on my face, saying, “I need to press this hard for just a minute so you can take some deep breaths of oxygen. Don’t struggle, just breathe deeply.” I tried, but got no air, and at that moment, my left arm was lit on fire. Eyes bugged open, in great pain, I struggled, and realized I had forgotten to say my star wish.

Here is another one of my weird things: every time I see the first star in the night sky, I make a wish. I’ve been doing this since I was a little girl. I have only made 3 wishes in my lifetime, and they have all come true; I just wish the one wish on every first star I see until it comes true. The first was when I was a pre-teen living in Shanghai, incredibly unhappy, with parents that seemed to hate me, big sister in boarding school, little sister in her own world, with only one friend who had moved away with the only family that had ever been kind to me…and my wish every single night when I walked my mom’s precious dog GiGi, was, “Please please give me a family that will love me as much as I love them.” Boom. 1992 I get Emily. 1994 I get my furry man. 1998 I get Hanna. 2000 I get Simon. Family complete. Boy, do I love them and boy, do they love me back. The second wish was during a horrible time while living in Hawaii; after 10 years of marriage, my furry man thought maybe it was time to separate. My wish was pretty primitive and desperate back then, “Please please make him love me again. Please please make him love me so our family can stay whole.” I’m pretty sure I have less to thank the Universe for that one, and have more owed to the hard work we put into couples therapy and re-inventing ourselves and our marriage. Universe or not, that wish came true. My third wish for the past 9 years has been, “Please Please watch over our family and keep us safe and happy and healthy and in love and faithful and successful and having fun.” I don’t ask for much.

So there I was on the operating table, feeling myself losing consciousness, trying desperately to finish the wish! “Please please watch over our family…and…please please…love…” and I sank into slumber.

After closing my eyes and floating away, it felt like in my very next breath I heard a bright voice telling me, “Time to wake up, it’s all done now!” Directly above my head was a monitor on which, if I squinted through the sunshine coming in the window, I could see lots of numbers, and a set of them that read, “1:48.” My throat was so sore I could barely swallow. I croaked, “Is that the time? 1:48? Is that the time?” And the person, who was behind me so I couldn’t see her, answered, “Yes, that is the time. I’ll be with you for a little while. Just relax. I’m not leaving your side.” And I heard her turn and start turning pages and writing on something. The time changed to 1:50. I blinked and realized that the sun was shining, it was 1:50pm, and I had woken up. I was alive! Incredible relief washed over me and tears rolled down my face. Worst fear conquered.

As soon as I wiped my tears, I felt a deep aching in my right armpit…the kind of aching you feel when a muscle is really sore. I lifted my right arm and started to stretch and rotate it, all while my eyes were too heavy to keep open; I just wanted to work out that ache. All of a sudden, I heard, “OH HONEY honey HONEY, STOP!! You’re making it BLEED and you’re going to pull out your stitches!” And some very gentle hands pushed my arm back down on the bed. I mumbled, “It bugs me.” I guess that translates to “please give me morphine” because I got a very sweet injection into my IV line, and I totally stopped minding the armpit…what armpit? A while later (time flies when you are stoned), I was wheeled back into Bed #17’s original spot in the recovery room. I think my Lola was driving, because by the time we whipped around corners and skidded in and out of the elevator, I was so carsick I could barely keep it together. I kept my eyes closed and pretended I was in the first trimester of pregnancy, making gentle huffs and puffs to keep the nausea at bay. After a few minutes of huffing, my new nurse asked me if I was feeling nauseated? Oh, just a wee bit…so I got a big dose of Gravol (one of the best inventions in the whole wide world for an upset tummy), and I heard somebody far far away calling my husband on the telephone. The next time I woke up, it was to kisses all over my face by my furry man. Still heavily medicated, all I could manage to whisper at him was, “I woke up, honey, I woke up.” With tears in his eyes, he continued kissing me, replying, “yes. yes, you did.” The next time I opened my eyes, my two younger children were there to hug me. Then I closed my eyes again. Drifting in and out of consciousness, I could hear my neighbours leaving one by one, and eventually, the janitors coming in to clean the ward. I opened my eyes, put on my glasses, and saw that it was 4:30pm. Why the heck was I still there?! I announced to Markus that I would like to leave please, and sat up. Alarmed, he tried to stop me, saying we didn’t need to leave so soon, he could drive home to Jasper in the dark. It turns out the nurse was waiting for ME to ask to go home. Sheesh. They needed to see that I could pee (and after 3-4 bags of IV-dripped saline, boy could I), then gave me post-op instructions. During one of my cat naps, Markus had magically gone to pick up my pain meds at the pharmacy. He also brought ginger ale that he force-fed to me (“You need sugar! Drink!”) Blech. The nurse was being very serious about wound care and stretching exercises, then she mentioned that the breast could be stained at the injection site with the radioactive contrast dye for up to 6 months. She was completely un-prepared for, and shocked by, my furry man’s flippant answer, “Well, that stain will be gone by April 15th no matter what.” (Double mastectomy scheduled on the 15th) and my out-of-control drunken guffaws. C’mon, you gotta laugh. If you don’t laugh, you will cry, people. Finally free, my furry man wheeled me in a chair out to the car on the curb, and we began our long drive home.

Once home, I actually can’t remember much, thanks to my new friends T3 and Gravol. I slept a lot a lot. After 24 hours, I felt disgusting and demanded to clean myself. My furry man, ever helpful, hovered. I had to tell him, “Honey, I know you want to help, but I can do this sponge bath. After the mastectomy, you can sponge away all you like. And I would love your help with this bandage change after I am done washing.” He reluctantly settled for that, but babied me all weekend long. It was heavenly, actually. Meeting the incision for the first time kind of turned my stomach. My whole armpit was swollen, and the incision was an angry smile of stitches along the natural lines of my skin. I sent up a silent little thank-you prayer to my brave sentinel node who sacrificed himself for me. Markus cleaned it, gently re-bandaged, and tucked me into bed with a drug refill.

Monday morning, my furry man had to head back to work, and Real Life hit me. The kids are on Spring Break and wanted sleepover marathons and playdates with friends; for the previous 3 days, Markus had been the chauffeur – it was my turn. Ever since my breast cancer diagnosis, I have been determined to be a nicer mom and to make sure that my kids have a really good childhood; I’d been getting kind of lazy in their pre-teen years, and had been letting the teen attitudes drive me crazy. New leaf, new Mom, more effort. I had to change out of pyjamas, comb hair, and put on makeup. The sun was very bright. I had to stop my drug habit so I could legally drive, so was a bit grumpy with just wimpy regular Tylenol. Not only this, but I had been walking around on pins an needles for days, nagging thoughts jangling in my head, “Sentinel Yes or Sentinel No??? When will they tell me? Will they know before my mastectomy? Will they have to postpone surgery if the results don’t come back in time??? Will I be okay if the results are positive for cancer in the lymph nodes and I have to walk around with no boobs for a year or so? How would it be to live in Edmonton by myself for 5 weeks while I have to have radiation therapy?” ‘Round and ‘round my head, these thoughts flew, like bats in a cave. Markus called me and texted me often, telling me, “Sentinel NO!!” My cousin and sister texted from Australia, “Sentinel NO!” Friends from all over the world sent prayers and lit candles, and posted selfies of themselves on my Facebook page, holding up their middle fingers, “Eff You, Barnard! Sentinel NO!” I told myself I could hold my breath until Friday; they had to have the results by Friday. I let my kids have all their friends over for slumber parties just to distract me. Holy Hell, that was an exciting time full of all-nighters, boys farting into water bottles, girls scaring themselves shitless on Walking Dead marathons, and more dirty dishes than I thought we even owned. I tried to carve quiet time for myself by taking long showers, looking at that new smiley face in my armpit, temporarily letting myself get irritated by silly things like not being able to shave that armpit. I dallied with wild ideas, like maybe doing some Movember fundraising of my own this November; I’ll grow a mustachio for my little armpit smiley face, and raise funds for prostate cancer! During all the chaos, I missed a call from Paul Bunyon’s office, yesterday. They left a message for me to call them back, but I didn’t get the message until after they’d closed. ARGH!

This morning, Markus told me, “I’m going to call them. I can’t be home to be with you for the news and I know I can take it on my own. I’m going to make the call.” I think I turned blue for 20 minutes with my breath held. At 9:20, he called me back and said in a very serious voice, “Check Facebook.” Whhaaa? Logging in, I read his post, “Thank you all for saying prayers, lighting candles, going to temples, making faces, cursing or even swearing. The sentinel in fact is NOOOOOOO.” Both Markus and I just let the tears fall in pure relief. Suzy Creamcheese 1: Barnard 0.

And on to the Big Day on April 15th. Bye-Bye Boobies Day is a GO, and thanks to Sentinel NO, I will have immediate reconstruction and will be coming home feeling whole and in control. I think this calls for a glass of champagne. Lift your glasses: here is to my sentinel node. A braver sentinel there never was.

Domestic Godess…Naked Plumbing

25 Mar 2014 1 Comment

by Suelinhess in adventures, Breast Cancer, Cancer, Family, Friendship, frontier living, Healing, home repair, homemaking, humor, illness, Love, Medical, self reliance, snow, support, Uncategorized, Winter Tags: breast cancer, cancer, Friendship, hair loss, kindness, Love, plumbing, recovery

Please excuse this interruption; your regularly scheduled cancer programming will continue after this mundane reminder that Life continues…and if you are me, Life is weird and good. Sometimes useful things happen when you are totally nude, and if you bare your heart as well, love will find a way to you.

I had a haircut scheduled. An hour before my appointment, I decided I should jump into the shower to wash the unruly mane. Standing in the shower, looking up at the “rain” shower head that our hotel clowns had so thoughtfully installed for us, that only ever dribbled out water a few tablespoons at a time, I snapped. I turned off the water and marched buck naked into my son’s room closet, where I kept our old shower head from our last apartment. I knew that it could turn low water pressure into a normal shower, so I just needed to un-screw the old head and screw on the new one, right? It would just take a few minutes, right? Wrong. Old shower head was rusted on (we have orange well water…it has magical properties). Undaunted, I marched into the kitchen to find a rubber glove from the sink, so I could get a better grip on the rusty shower head. As I was still naked, the march into the kitchen quickly turned into a hunched-over scurry. Rubber glove in hand, I scurried back to the bathroom. I shoved my son’s desk chair into the shower stall, stood up there wearing nothing but one rubber glove, and wrestled with the rusted-on shower head. 5 minutes and many curses later, I realized I needed an actual tool to help me. Very dangerously, I jumped off of the chair onto the wet tile, then slid my way back into the kitchen, sporting my one-glove fashion. I found our multi-purpose tool with the pliers attached, in a cup next to the microwave oven. Up I hopped onto the chair in the shower, and spent another 5 minutes fruitlessly banging on the old shower head, inexplicably wearing that yellow rubber glove on my right hand. I finally figured out I needed something bigger; something from the actual toolbox…in the garage.

Yes, we live in the woods, but the snow plow for the hotel does drive by occasionally. I did not want to scar the snow plow driver for life, so I put on my winter parka to cover my nakedness. Why take the time to get fully dressed for a quick trip across the front yard to the garage; this was just going to take a few minutes, then I could hop into the shower, right? As soon as I stepped outside and the icy wind took a swipe at my backside, I should have heeded its warning. But no, I’m not known for any kind of wisdom, whatsoever. I scanned the horizon of our driveway to make sure the coast was clear, then clunked awkwardly out to the garage in my son’s winter boots. My 2 dogs scampered beside me, perhaps thinking this was another of Mama’s crazy moments, and maybe I would stop and play catch along the way; they were only right about the crazy part. Thankfully, it was only a mild -10° Celsius and just beginning to snow. I rooted through the garage, found the toolbox (which should be stored in the house, dammit!), found a giant wrench, and clunked back to the front door in record time. Correction, I clunked back to the LOCKED front door in record time. Picture naked woman cloaked in a Northface parka with a furry hood, standing in snow boots, in the falling snow, shaking a giant wrench up at the sky, while howling in banshee-like fashion. She slumps her shoulders in defeat, thinking she will just stand there and die of frostbite until her menfolk return from Calgary 7 hours later to recover her frozen body. This would be preferable to walking her naked self down to the hotel front desk and politely asking someone to find a spare key for the cabin. Then, a lightbulb blinks over her head and her head snaps up with the memory of a brighter time when her mind was fully functioning, when she had hidden a spare key in a secret location, elsewhere on the property. Crazy naked woman in parka and snow boots points her giant wrench in the right direction and slips and slides to the hidden key, blessing her formerly sane self. Victory!

Back in the house, I clunked to the bathroom, shed the parka and the boots, climbed up onto the chair, made short work of that rusty shower head, installed the new shower head, and threw the chair out of the shower stall. Ahhhh, sweet hot water cascaded out of the ceiling, and all was right in the universe. It’s amazing how a good shower can restore sanity; or at least the appearance of sanity. At least I remembered to get fully dressed for my haircut appointment.

At the salon, I met a lovely lady named Shawna. My little boy, Simon, has always hated haircuts. Whether I cut it, or someone else cuts it, he always feels foolish for days, waiting for the hair to grow back to an un-embarassing look. This is how he felt until he met Shawna. For the last 2 haircuts, he has come back glowing, posing in front of the mirror, making studly faces at himself. My furry man told me last week, “You can only get your hair cut on a Tuesday because that is the only day that Shawna works. She lives in Valemont (1 1/2 hours away) and only comes in on Tuesdays. She will be worth it. If she can make Simon happy, she’ll make you happy, I promise.” Shawna is a petite young lady in horn-rimmed glasses, hiding behind a fringe of long straight brown hair. There were just the 2 of us in the little salon, and she shyly smiled and reached out her hand to me, “Are you Susan? I’m so happy to meet you!” I haven’t felt that welcomed in this town in so long, I don’t care that she got my name wrong. I was so happy to meet her, too.

When I shook my long hair out of my bun, she gasped, “Oh, what beautiful shiny hair! Are you sure you want to cut it?” I explained that I was due for some surgery and that my husband would have to wash my hair for me for a couple of weeks. I wanted to cut it short enough that it would be very easy for him to care for. She brightly said, “Oh! If you want to come in here, I would be happy to wash it for you? Or?…” I realized it was so much easier to just blurt out that I have breast cancer, instead of dancing around the subject, and told her that the short hair will come in handy for not only the post-op recovery period, but possibly for chemotherapy down the line. Shawna put both hands on my shoulders and spoke to me in the mirror, “Thank you for sharing that with me. I want you to know that my grandmother just finished her treatment for breast cancer and she is doing well, and that the hospitals in Edmonton are wonderful.” Then, knowing exactly what type of low-maintainance hairstyle I will need for my upcoming adventure, she settled into cutting my hair perfectly. We chatted about kids (she has an 11 year old daughter) about safety in small communities, about camping, about both of our husband’s loving to lead us up mountains and on hikes we get lost on, and about living far and away from cell-phone reception, near the North Pole. An hour passed in the blink of an eye, and I looked up to find my face looking years younger, framed by my sassy new haircut. Shawna walked me to the reception desk of the salon, and said this to me, “If you are feeling unwell and just need to freshen up, call me. I will come wash your hair, cut your hair, or even just blow-dry your hair after your husband washes it for you. And it doesn’t need to be a Tuesday. I wish you all the best for your future.” Then she wrote her home phone number on a card and handed it to me, holding my hand for an extra moment in her hand, as I took the card. How blessed am I? Every corner I turn, I meet kind people with loving hearts.

So here is the lesson of the day, boys and girls: a naked plumber in the chill of winter, is not as wise as a plumber fully clothed. But a naked heart in the chill of cancer, can sometimes be the best kind of wise there is.

An Ode to Breastesses (Ch.3)

20 Mar 2014 2 Comments

by Suelinhess in adventures, Bitching & Moaning, Breast Cancer, Cancer, confidence, Family, Healing, humor, illness, Love, Medical, Uncategorized Tags: breast cancer, breast reconstruction, breasts, insecurity, mastectomy, plastic surgery, surgery

Your brain can adjust to any situation, no matter how awful. Just because someone is in a grave place, when thoughts of death lurk in the shadows of her brain, it doesn’t mean she doesn’t snap at her kids for arguing at the dinner table, or that she doesn’t look in the mirror and curse the grey hairs creeping into her brow line. Cancer doesn’t turn you into a noble person; it just makes you feel incredibly guilty for having petty thoughts. I’ll share mine with you, since I love to barf my personal feelings at your feet.

I met my plastic surgeon on Monday. Dr. Mehling (the potential Babe the Big Blue Ox to my lumberjack Dr. Olson) had me meet with his partner, Dr. Schembri. The name is pronounced “Scam-bree” which, to my addled brain, sounds too much like “scampi” for me to ever remember to refer to him as Dr. Schembri ever again. So until I get to know him better, I can only remember his name as either Dr. Shrimpy or Dr. Scampi. He looks like a younger, smaller version of my Paul Bunyon. He even wore a plaid shirt. He introduced himself to me by apologizing for Dr. Mehling’s absence, saying that all 3 men will be operating on me at the same time in the operating room, and the only difference between himself and Dr. Mehling is that he is a taller, hairier version of Dr. Mehling. Later, I got a glimpse of Dr. Mehling, and the description is dead-on. Dr. Mehling looks about 4 feet tall, is super skinny, and has a shiny head as bald as a cue ball. I’m glad I got to meet the furry one; furry men please me. Anyway, Scampi explained all the different options for breast reconstruction to me. Dr. Olson had referred me to them because that is mostly all they do; they primarily work to help women rebuild their breasts after they have been damaged by something awful like a cigarette-smoking, beret-wearing, stinking Parisienne pickpocket named Barnard.

Breast reconstruction has moved light years beyond slapping a ziplock baggie full of silicone into your chest cavity and sewing it up. For you newbies out there, those are called Implants. Babe the Big Blue Ox and his partner Scampi specialize in Autologous tissue breast reconstruction. This means that they use your own body parts to repair your breasts. It’s a beautiful thing. They can take tissue, fat, and muscle from your back, your bum, or your abdomen, and re-connect the blood supply in your chest. If all goes well, you are all you, in the end. Don’t get me wrong, nobody will walk out looking like a Playboy bunny. There are really vicious scars that will make a permanent smiley face across your entire abdomen or your back, and you will not have nipples unless you choose to have them reconstructed in a separate surgery down the line, and get them tattooed to look “normal.” But the goal isn’t to get pretty boobs. The goal is for you to feel whole, for you to feel good in your bra, for you to feel your usual silhouette in your clothes. It’s done so you can tell yourself, “Okay, Barnard took part of me, but I am whole, still.” Yes, there are women out there who choose not to have reconstruction after their mastectomies, but I am fine admitting that my breasts are part of my identity. They may have outlived their function as baby-feeding machines, but I still need them to be me. Without them, I would feel less of a person.

Back to the making of bionic boobies. Scampi and I both agreed that a DIEP flap reconstruction would be right for my body. Free Deep Inferior Epigastric Perforator (DIEP) Flap reconstruction is where they will take my abdomen with a small piece of muscle, remove it and and rebuild my breasts. They will reconnect the blood supply in my chest and the tissue will eventually heal and become my breasts. After a short discussion, Scampi asked me to hop up on the examining table and lie down, then proceeded to grab huge handfuls of my tummy as he eyed my breasts. Essentially, he was trying to gauge how much breast he could make to match my current cup size. I had to laugh, expecting him to start grabbing the boobs to compare to the handfuls of tummy. He told me that during surgery, Dr. Olson would be working removing my breasts, while the Babe the Big Blue Ox team would be working on my abdomen, then they would move up to my chest for microsurgery that would take up to 10 hours. As he was pinching and calculating, I stared up at the ceiling and started trying to count how many times I’ve had to flash my boobs to strangers in just the last month. I counted 10 people. That’s more than 3 times the number of people who ever got to play with my boobies for recreation in my entire LIFE. And it turns out that those might be the last times I will ever feel anyone playing with my boobies in the future. The new ones will not have the nerve endings to make playing fun on my end – they will just feel like my arm getting squeezed. Part of the package. The Six Million Dollar Man Steve Austin had both legs, his right arm, and his eyeball replaced. I bet he never felt his girlfriend playing footsie with him under the table, but he appreciated the thought, and it never stopped him from playing the rest of the game. Yeah, I’m comparing myself to a fictional person because I have yet to meet a person in real life who would talk about this with me. I’m going to be the first person in YOUR life who will be frank. I’ll keep you posted.

After all of that detail, talking about recovery, about the ickiness of excess fluid coming out of my breasts and my abdomen, of draining tubes into plastic pouches, of possible infection, of fat necrosis, I thought, “hey, there can’t be anything worse this guy can tell me.” Then he drops the bomb: if my sentinel node surgery comes back positive for cancer, they will have to treat my lymph nodes with radiation, so I would have to delay my reconstruction. That means walking around flat-chested until after radiation therapy (about 5 weeks typically) and until I can be scheduled for reconstruction surgery after that. The current delay for plastic surgery is 1-2 years. This is because after a mastectomy or lumpectomy, you are technically considered “cancer-free.” You then get lumped into the rest of the regular plastic surgery patients waiting for new boobs (i.e. the women who just aren’t happy with their little boobies and want big jugs so they can fall out of their bikinis in Vegas). And all those women get bumped on a daily basis for women exactly like ME who have active cancer and want immediate reconstruction; meaning they may wait forever! I knew this in advance (from my research online), which is why I had insisted on mastectomy with immediate reconstruction. By law, they have to perform immediate reconstruction upon request during a lumpectomy/mastectomy because the cancer bumps the woman to the top of the list. And now I find my evil plan could be thwarted by my own sentinel node. Traitor.

Since first discovering the lump in my breast, I have been able to move forward by focussing only on short-term goals. First, it was “just get to the mammogram/ultrasound; it could be nothing.” Then, “oops, it’s something. Ok. Just get to the needle biopsy. The tumour could be benign.” Then, “Oops, it’s malignant. Ok. Just get to the surgeon. It could just get cut out, you could get rebuilt, and you could be normal by summer.” Now, “Oops, it could be in your lymph nodes so you might not get your breasts back for a looooong time.” OK. New Goal: Just get to the sentinel node surgery on April 3rd and wait for a week for the results. They could be negative for cancer. They could be clean and beautiful and cancer-free. Or, as my husbands’s new battle cry puts it: “Sentinal NO!!!!”

So here is my petty thought. I really love my breasts. I love the way they make my furry man’s eyes light up, then narrow with purpose. I loved the tug my nursing babies gave them. I loved the rush of milk letting down to nourish my sweet infants after the initially painful suckling. I love the gentle swell of my cleavage when I am in a beautiful dress and ready to dance the night away. They were works of art in my youth, only second to my legs as my favourite parts of my body. As I have aged, they have headed for my knees, making me a perfect cover girl for National Geographic. But ptosis or not, they are soft, they are lovely. They are where I hug a crying child. They are where I cross my arms or clasp my hands when I am heartbroken or worried sick. They cushion my heart. They still have purpose. Without them, nothing comes between my heart and the outside world, to insulate me. Without them, I feel vulnerable. If I could have reconstructive surgery, I wouldn’t have my original breasts anymore, but I would have acceptable substitutes. I don’t want to not have breasts. So there you have it. I expect you now have the same stunned expression that my husband gave me when I confessed this to him a couple of days ago. He slowly said, “But. You. Will. LIVE.” You see why these thoughts are such shameful secrets? How can my mind betray me by getting so used to the idea of possibly dying from cancer, that it lets itself get bothered by THIS?! I know I should let all the little things in life just roll off my back, considering there are much bigger things to worry about. I can’t help it. Remember, cancer hasn’t turned me into a noble person; I’m as silly as I ever was. And if you know me, you know that’s what I am, a bundle of everything all jumbled up inside. I have serious thoughts, but this little one is in my face right now, and I can’t shake it. Help me out. On the count of three, please join me in chanting my new mantra. 1…2…3… SENTINAL NO!

Letters From Narnia

Birthday Survivor

Not a Fairy Tale

Just a Spoonful of Sugar

Walking and Loving Each Other Toward a Cure

How Blessed to Have an Uneventful Day Together

Signs of Life (Ch. 8)

What Not to Wear (Ch.5)

Farewell, Brave Sentinel (Ch.4)

Domestic Godess…Naked Plumbing

An Ode to Breastesses (Ch.3)

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