April | 2014 | Letters From Narnia

Greetings From Space Mountain (Ch.6)

30 Apr 2014 1 Comment

by Suelinhess in Breast Cancer, Cancer, Childhood Memories, confidence, Faith, Family, Friendship, Healing, illness, Medical, self reliance, support, teenagers, Uncategorized Tags: breast cancer, breast reconstruction, cancer, chemotherapy, hospitals, mastectomy, surgery, tumour

When I was a little girl, our parents took us to Disneyland. It was the 70’s and, for all you suffering young folks, I don’t remember standing in any lines for rides back then. Most of the time, if we wanted to, we could just stay on and ride over and over. Space Mountain was famous for being the newest and scariest roller coaster ride ever, and my dad wanted the whole family to try it. My mom straight up refused to go, while my little sister and my big sister quickly decided to stick with her. My dad looked at me and said, “Let’s go, Sue-Sue. This will be fun.” Sure, how bad could it be? And even if it was really bad, I knew I just had to hold on for 2 minutes and 45 seconds. Those were the longest 2 minutes and 45 seconds of my life. I hated every moment and just knew I was going to die. Unfortunately, my dad had so much fun, he grabbed my hand and pulled us onto another car to ride it all over again. I ended up squeezing my eyes shut, taking a death-grip hold of the safety bar in front of me, and prayed for the light at the end of the tunnel. I had passed the point where screaming would alleviate the terror; it was all I could do to breathe. Last Tuesday, April 15th, was Bodacious Ta-Ta Tuesday, in which I underwent a skin-sparing double mastectomy with free TRAM reconstruction. I was told there would be pain after the operation, that I would be looking at weeks of healing time, but that there would be pain medication and everything would be just fine. Pain? I laugh in the face of pain. Ha. Ha. Ha. Hold onto the safety bar, folks, this ride was about to get ugly.

My alarm rang at 4:30am. I walked to the hotel room bathroom in the dark, and took the last shower I would have for a week (I really should have taken a little more time to soak that up; I never knew just how disgusting I would end up feeling). All towelled off, I stood quietly while Markus carefully re-drew the blue Sharpie lines on my breasts and abdomen that my surgeon had drawn the day before. When I was completely re-drawn, we stood there, looking at each other, and he stooped and placed one soft kiss on each breast, and drew a little heart over my right one. I never said a word, but each time our eyes met, he read the worry in them, and told me, “It’s going to be ok. We’re going to be ok.” We drove through the dawn to the Misericordia Hospital, where we rode the rickety elevator up to the 5th floor. Through the warren of dark narrow hallways, we found the room for me to check-in at 5:45am. They had me change into another lovely hospital gown, made sure that I had nothing of value on me – no jewelry, piercings, contacts – just naked and plain me. Then we sat and waited until 7am, when I would be wheeled away. We sat and eavesdropped on the other women who came in for various surgeries. One woman came in alone, and told the nurse that she was to have a hysterectomy. When asked if her husband would join her after parking the car, she sadly said, “No, he has to go home and get the kids ready for school.” Markus and I both reached out our hands at the same time and grabbed the other’s hand, and he shook his head sadly. I was so lucky to have him there with me through everything. Our nurse, a portly older woman named Tamara, came in on us and started chatting. Markus asked if he had to say goodbye when the stretcher came for me, and she whispered, “This is what you do – you tell them that Sue is very anxious and I will tell them that you need to accompany her. Then you, Markus, just stick next to her side until they tell you you can’t go any further. That’s the best I can do for you.” I felt like a fairy godmother had just given me a secret key to escape the evil forest. Then a stooped old asian lady came into the room calling for me. She introduced me to her young trainee, and said they would be walking me to the operating room staging area. That was a first. So off we walked, back through the warren of hallways. We ended up in the same room where I had waited for my sentinel node biopsy surgery, 10 days earlier. Finally, familiar territory.

There, I was told to hop up on a bed, put on the shower cap, and wait to meet my anesthesiologist. While we were waiting, Markus turned to me and said, “Hey, let’s not wait for you to say your star wish until you’re falling asleep in the operating room. Let’s say it together. Right now.” And he grabbed my hands and we silently wished our wishes, “Please watch over my family and keep us together, in love, happy, healthy, faithful, and having fun AMEN.” My drugged theory during my sentinel node biopsy that all anesthesiologists are asians, was shot down when the guy ended up showing up. Short white guy. Dr. B (can’t remember the name, just that it started with a B) checked my teeth, asked me the usual questions (“are they all your own?”) made me open up my mouth as wide as I could, then patted me and said he would see me in the operating room. This time, things would be different. Instead of putting in the IV and giving me a sedating drug before going into the room, I would be wheeled in where I would meet the TEAM of anesthesiologists and nurses who would take 30 minutes setting me up so I could be safely comatose for the operation. We were told it would take maybe 8 1/2 hours from the surgery start time (8:30am) but maybe longer, so Markus should come back around 5pm, or call the hospital to check in. Before they wheeled me into the room, a tornado of a man rolled around the corner, roaring “She’s BAAAAAAAAACK!” and descended upon me to plant a big kiss on my forehead. Dr. Olson, my big lumberjack general surgeon. He would be responsible for removing my breasts, taking Barnard with them. Then Dr. Schembri came in, cheerfully shaking hands all around. Dr. Schembri explained that while Dr. Olson removed my breast tissue, he and his partner, Dr. Mehling, would be working on the abdomen area, cutting away the tissue, blood vessels, and muscle they would need to use, and then carefully sewing that area back together. And once Dr. Olson was done with one breast, Dr. Schembri would move up to reconnect the blood vessels from the chest wall to the newly placed abdominal tissue, building my new breasts. Then he clapped his hands together and said, “Are you READY?!!! I had my coffee this morning, I’m ready to roll!” I heard echoes of my dad saying, “Let’s go, Sue-Sue. This will be fun!” Kisses good-bye to my furry man, with him whispering in my ear, “Don’t worry, you are waking up from this one too, I promise. And I will be there waiting for you.” And off I was wheeled to the operating room.

Inside the operating room, I was introduced to the Charge Nurse Mary, and her staff, which included other senior nurses, and my anesthesiologist whispered to me that either I was someone special, or the hospital was keeping a close eye on him; that he had never had the pleasure of having to work with as many senior nurses as he had today. I asked, “Is he very naughty, Mary?” And she said, “For sure – we’ve got to watch this one…” and they all laughed. 30 minutes later, IV in, all checks checked, and it was all stations go. I got the mask on my face, and the Dr. B. cautioned the nurse, “Now, we don’t want’ to suffocate her, let’s press a little more gently.” PHEW. A few deep breaths, and I was gone.

The next thing I remember is moaning into a mask that my arm hurt. The mask was removed, and in a complete foggy state, I tried to straighten my right arm and just couldn’t, crying the whole time. I heard the nurses telling each other that they swore my arm was never bent at more than the correct angle during surgery, blah blah blah, and after I made enough noise, someone took pity on me and knocked me out with something. Next thing I know, I opened my eyes to see the blurry figure of Markus sitting in a chair at the foot of my bed. He jumped up and rushed over for kisses and my now familiar delight, “I woke up!” and then huge waves of pain just broke over me, while every pore in my body seemed to open up and start pouring sweat, drenching me. They had bundled me up with blankets and sheets and what I would consider my personal torture chambers for the next 4 days: electric compression leg sleeves that encased both legs from the thighs down to the ankles. I started kicking at the covers, while crying out that I was HOT HOT HOT HOT HOT, and Markus tore at the sheets until I was lying there in just my wet hospital gown. Still, I was sweating. The nurse explained that the thermostat was turned up to keep the room warm because if my body was warm, it would heal faster. My worst nightmare had come true. Markus knows I hate being overheated, so he ran to the bathroom and made a washcloth wet and started wiping my face and my neck and arms, going back to the bathroom to cool the washcloth endlessly, until I stopped saying the word, “hot.” While he was doing this, the nurse took my hand and guided it to what would be my best friend for a few days, my on-demand morphine button. She told me that I could press it every 6 minutes if I needed it, but to be careful because there was a safety feature that prevented me from overdosing and at some point, I might find that I have to wait a little longer for the next hit. I stopped listening after the few seconds it took for the morphine to enter my IV line. Ah blessed numbness…

I floated in and out of consciousness, always opening my eyes to find my sweet husband sitting in the corner chair. Once in a while, I woke to kisses, or cool cloths on my forehead. Every hour, on the hour, nurses came in and poked and prodded, talked to Markus, then left. When I was finally able to speak a few sentences, Markus made me understand that my surgery had taken, not 8 1/2 hours, but 14 hours. He said he had been worried sick, and nobody really told him anything, because of course, the surgeons were all inside the operating room, working on me. The nurses tried to soothe him, saying that no news is good news. And he had waited and waited. It was almost midnight, and I wondered out loud that he hadn’t been kicked out because visiting hours were over at 9pm. He told me that I was in the only private room on the ward, and the nurses told him that he could stay as long as he liked (he’s a charmer, that one). Eventually, I don’t know when, he kissed me and said he would go back to the hotel and see me first thing in the morning, when visiting hours began at 9am.

The night did not pass peacefully. I had 6 minute intervals when the fire of pain that consumed all but my arms and legs was temporarily quelled. However, I did reach the point when I was cut off, and those were minutes of agony. I thought the clock in the room was broken, because those hands never seemed to move. It was perpetually 2am, and I needed pain relief. My first nurse, Astrid, a plump woman with a sweet round face, glasses, and a shiny black bob, would bustle in and out, take note of my vitals, and ask me what my pain number was. From 1-10, with 1 being no pain at all, and 10 being unbearable. Here I am, proud that I have a high threshold of pain, having given birth to Hanna with no anesthesia (to be fair, they couldn’t find the anesthesiologist, that day, and by the time he got there and gave the epidural, Hanna had already popped herself out of me – she’s not a very patient child, that one). When Astrid would ask me the pain question, I would be embarrassed to whimper, “8…” She finally said, “I can see that you have been pushing the button frequently, it’s apparent that this dose isn’t as effective as it should be; let me go ask permission to up your dose a bit.” And another fairy godmother was born.

Once I got on top of the pain, sometime before dawn, Astrid started explaining what her hourly checks were about. First, she needed to check my vitals- blood pressure, heart rate, blood oxygen level. Ah, so that was what was on my face. I kept feeling like I was wearing glasses that had fallen down too low – it was the little oxygen tubing that pokes into your nostrils and threads back over your ears and then under your chin. It was like a rubber mustache. For a hot and sweaty chick with pain issues, that tubing was annoying. But every time they removed it, a few minutes later my oxygen levels would fall. My breathing was too shallow; my lungs were groggy and still sleeping after 14 hours of being in a medically induced coma. She noted that my heart rate was very high (I kept setting off the pulse monitor’s alarm). I explained that after every test under the sun, my heart had been pronounced different, but fully operational; I just have a fast one. They didn’t believe me until about Day #4, when we all got so sick of the alarms going off that they removed the pulse monitor except for their hourly wellness checks. Second, they needed to open my gown and physically check the tissue on my newly reconstructed breasts. The first time I was lucid and they opened my gown, I stared down at the new girls in wonder. I never expected them to resemble real breasts – I had pictured much worse. Rising up above the surrounding area that was inexplicably covered in pin-sized scabs and 2 large blue circles in between them, they were lumpy, covered in a strange clear bandaging film with football-shaped white bands around where the nipples should have been. In the centre of each one was a clear bandaged window onto…plain skin; Bye-Bye Boobies Day included my nipples. Those football-shaped patches of skin were actually skin from my abdomen. So the nurses would press the outside breast skin and release, watching the blood rush back to the spot they had just pressed. They were checking capillary action (that the blood vessels in the skin were functioning, circulating the blood to keep the skin alive). They then did the same to the transplanted skin inside the footballs. Finally, they produced a mini Dopplar machine – they kind the doctors use to hear your baby’s heartbeat during your pregnancy. Dipping the mini-wand in gel, they turned on the speaker, and gently placed the tip of the wand in the centre of the little football on each breast. After a few swipes, the underwater sound of a heartbeat would blare out of the speaker. This was the sound of the finely repaired blood vessels that Dr. Schembri had slaved over for 14 hours. There should have been an arterial sound and a venous sound coming from each breast centre. There was a bit of a fuss when the left breast only broadcasted venous sounds. But the nurses noted that the operating room nurses and Dr. Schembri could only find the venous sound in the left side, as well, and they weren’t worried. Later, after dozens of these checks, the different nurses and doctors found the arterial beat; it had been skillfully tucked under the vein. And Dr. Schembri later also reminded me what my high school biology had taught me. If the venous beat could be heard, that was de-oxygenated blood exiting the heart, so the artery had to be functioning to have brought the oxygenated blood into the heart in the first place. Anyway, without those precious heartbeat sounds, my breasts wouldn’t survive, and the tissue would die; tissue necrosis. I found myself holding my breath each time they checked, just like at the doctors’ offices for the countless heartbeat checks on my unborn babies. I found myself whispering, “c’mon, show yourself.” Astrid started calling my new breasts my babies. Finally, they checked my catheter. We were all very surprised to find a dark green liquid filling the bag. The nurses asked me, pointing at the 2 blue pencil-erasure-sized dots on my left breast, “Did the doctors inject you with contrast dye during surgery?” I could only shrug and say, “um…I dunno…I wasn’t really there…” Turns out, my trusty lumberjack was looking out for me and was checking out old left breast tissue for any possible tumours before removing and sending it off to the lab. I love having so many guardian angels.

Somehow, I survived that first night, and watched that broken clock for 9am to roll around so I could see my furry man. At 7am the next morning, Astrid came into my room to do the final check of her shift, introducing me to Ryan, a soft white male nurse with a very hesitant manner, who would take over the next shift. She reviewed the previous evening with Ryan, and showed him how to do the Dopplar check. After she left, Ryan said he would return after rounds and change my dressing. Then, Markus entered the room, and the sun shone. Someone knocked, yelled, “BREAKFAST” and put a tray of food on the table next to my bed. Markus went over to lift the lid of the plate, and asked, “Are you hungry honey?” I forgot to say that the general anesthesia had given me a serious case of motion sickness. The thought of food nearly emptied my empty stomach. I chomped on ice chips instead. Ryan popped in to the room to offer me the bane of my existence for the next few days: the incentive spirometer. A paperback-sized clear plastic device, with a rubber tube coming out of it. In the plastic window, there is a yellow disk at the bottom, inside a blue circle. In the centre, there is an insipid smiley-face. Above the smiley-face, there is another circle. The goal, Ryan explained, is to exhale all the way, then steadily inhale through the tubing to keep the yellow disk on the smiley-face, not above or below it. It is designed to encourage deep-breathing, and re-inflation of the lungs post-surgery. If the lungs don’t inflate properly, and accumulated fluid remains, pneumonia could develop. I was supposed to give 10 earnest efforts every hour. I could have sworn I was very diligent, but I underestimated the power of the lingering general anesthetic mixed with the morphine. Markus now tells me I would take one or two puffs, and then nod off fast asleep holding the device, while he softly laughed in his chair. I do remember being woken a few times by his, “Honey, try one more time, okay?” Oh, and while we are on the topic of being laughed at, it turns out my furry man documented my hospital stay with some really unflattering photos. You see, he thought he would pick up the flag and continue on my behalf, posting my updates on Facebook for all my friends and family to see. This was far easier for him than contacting each individual and repeating himself dozens of time. In the early days, I was pretty much miserable all the time. I don’t think I cracked a smile until the 3rd day.

The #1 thing they want you to do after surgery (besides the deep breathing exercises) is to get up and walk. Walking = better circulation, which leads to faster healing. Of course, after 14 hours of being in a coma, with those chemicals still circulating in your body, just sitting on the edge of the bed is a huge challenge. There was a little white board in my room, with the name of my nurse for the day, the date, my pain number, and the day’s goals. On the first morning after surgery, my goal was originally to get up and walk the halls, but when they watched me sit drunkenly at the edge of my bed, they changed that to “sit in chair.” When I did that, feeling like every stitch in my body would rip out, there was great fanfare. You’d think I’d given birth to a baby, or something. The next morning, my new nurse, Sharon, coaxed me out to the nurses’ station outside my room door. They all cheered me on, like a baby taking her first steps. When I reached the counter of the nurses’ station, Nurse Ryan peeked up at me from the other side. I asked whether he was offering candy for the patients who made it to that walking checkpoint, but I forgot that I wasn’t able to smile yet (too much pain) so he actually looked around desperately for some kind of reward to give me. I flapped my hands like a crabby old lady, and turned around to shuffle back to my room, leaning on my IV trolley, furry man hovering, and Nurse Sharon following behind, carrying the pee bag connected to my catheter. A very dignified parade.

In between sleeping, ice chips, morphine hits, and walking, I was visited by a parade of doctors and nurses. First, came Dr Schembri, so proud of my new babies. He, himself, seemed almost surprised that they turned out so well. Doctors on their rounds, popped into my room just to see his handiwork. I kept hearing “Wow, no bruises! Would you look at that? They are so beautiful!” It turns out, my surgery is the most complicated surgery the hospital does, and last year, they only performed one of that kind. And I found out from all the different doctors and nurses, that if you needed a mastectomy, Dr. Olson was the best in Alberta. And if you needed the immediate reconstruction as complex as mine, Dr. Schembri and Mehling were the best in the province. So basically, I was probably the luckiest woman on the planet that day my angel Diana referred me to them. Dr. Olson blew into my room, bringing in laughter and sunshine. He told me that even luckier, the brand new Director of Surgery had observed my operation that day, and was particularly interested; would I mind being their poster child so they could look into getting more funding for other cancer patients to have the same opportunity I had? Misericordia Hospital is very old, and there is only the one private room on the ward. My lumberjack’s vision is to drum up the funding to provide more awareness to not only the younger patients like me, who researched this treatment and pushed for it, but also for the older patients or the ones who come into the cancer scare completely clueless. He wants to have a dedicated private room for the cancer patients who undergo this procedure, considering the hourly intensive care that is needed post-op. He said, “I want to give you a tv, maybe get the room painted in a comforting colour, give your husband a comfortable chair to sit in, instead of this one. I told him, “You and Dr. Schembri gave me back what I feared cancer would take away forever. I could never thank you enough. Whatever you need, I will be there for you.”

When I first woke up from surgery, weighed down by pain, I never could see past it; I thought it would never end. I was forever trapped on Pain Space Mountain, in an endless loop of crushing pain. When I first coughed, I cried, until the nurses taught me to press a pillow on my tummy before each cough, so it wouldn’t feel like my stitches would rip out. My breasts, even though I couldn’t feel touch on them because the nerves had all been severed during surgery, would sometimes just throb and burn. Each breast had 2 tubes coming out under my arms and my abdomen had 2 tubes coming out just above the pubic line. This side sleeper had to find a way to rest flat on my back, with an arrangement of pillows all around, to prop my arms and legs. When they took out my catheter, I had to re-learn how to pee, like a baby. After 10 minutes of sitting there, with Markus hovering in the doorway of the bathroom, I finally shooed him away, and thought about how to trick my body into relaxing. It would be too painful to get up and turn on the water faucet in the sink, so I turned to the roll of toilet paper beside me, and started focusing on it, on the paper rolling out, on the texture of the paper, even rubbing it on my face and (ew, I know) smelling it, and before I knew it my body slowly relaxed and remembered what to do. Every 12 hours, they injected me with a blood thinner that burned going in, leaving behind a bruise. Because of my sentinel node surgery, all needles had to go into my left side. My left side started to complain that this was an unfair arrangement after a day or two. The worst part was when it came time to disconnect me from the IV machine and my on-demand morphine. If things got really bad, I could ask for a shot of morphine, but boy did I pay for that. The morphine stung like fire going into my arm or leg, and no amount of hissing or Lamaze breathing could make it better. Every day, my furry man would patiently wait on me, hand and foot, encourage me to walk, cheer me on when I did, ask me what I needed, and bring me anything he could to make me happy. And all along, I couldn’t bring myself to smile. I was tired, I was hurting, and it felt like it would drag on forever. I wasn’t permitted to shower until Friday, so I was a sweaty mess, with oily hair and itchy skin. They gave me body wipes to use, but without warm water to rinse with, I never felt clean. My first shower was something I actually cried for. Well, I cried for lots of things, and I cried with frustration when I couldn’t make Markus understand me. Thank God for his patience, because I found myself losing my temper and sobbing in frustration about the dumbest things. I didn’t want to be bossed about eating – I just wasn’t hungry and just wanted ice chips. I didn’t want to be asked all day long, “do you need to poop?” NO I don’t need to poop yet! When my ex-best friend morphine caused me to hallucinate that I’d had breakfast with an Amish boy and his mother, I demanded to know where they had gone when I woke up in the morning. It was a struggle for Markus to stop his giggling while trying to soothe me. It wasn’t until later that my homecare nurses told me that the residual general anesthetic in my system was mostly responsible for my roller coaster of emotions. The nurses in the hospital kept telling me I was going to check out of the hospital and go home on Sunday. On Wednesday, when they said it, I silently said, “Bullshit” in my head. On Thursday, I said, “no way” in my head. On Friday, after all day of walking up and down the hallways with Markus, I thought, “Hmmmph. We’ll see.” On Saturday, when Markus and I were on our walks through the halls, and he made me laugh for the first time by showing me to a room that he said the hospital arranged especially for me; a room that was full of plumber clowns trying to snake a drain while standing around scratching their asses and wondering what to do, I finally thought, “maybe I can do this.” All along, my furry man would tell me, “Baby steps. Every day you’re getting better. Compared to Tuesday night, you are light years ahead!”

And Sunday came and we were sent home with a full prescription of antibiotics and painkillers, with instructions to return to the city for a follow-up with Dr. Schembri in 2 weeks. They took out 2 of the drains from my breasts, so I only had 4 drains for home. They arranged for public health nurses to visit me at home every day to change my dressings and make sure I had what I needed to heal. And my instructions were to REST. I wasn’t to lift anything heavier than a gallon of milk, no vacuuming, no housework of any kind. Just gentle walks to the bathroom, lots of sleep, and lots of protein to help the healing process. How hard could that be? My friend Lori and her husband Rob were at home to relieve our adult daughter Emily so Em could run back to university to sit for her final exams. Rob was cooking Easter dinner for the kids, and Lori would run them back and forth to school every day while she worked out of a temporary office at the hotel. Markus had taken that entire week off of work, in order to make sure I was comfortable and had anything I needed.

The drive home on Sunday felt like the longest drive in the history of road trips. The painkiller I was prescribed was called Tramidol. Perhaps I had developed an immunity to painkillers, but it didn’t feel like it did much to numb me. I had to hold the seatbelt off of my abdomen and my chest, as I was instructed to keep all pressure from those areas. Markus had purchased two pillows, so I made myself as comfortable as I could, I popped 2 Tramidol and 2 Gravol (to make me sleepy) and tried to nap the whole way. Poor Markus would try to warn me about bumps, but we drove over so many, his efforts didn’t provide much relief. We stopped at every possible rest stop because I was full of water, and my furry man gently helped me hobble into every washroom. I think it took us 5 hours to get home, but when he quietly woke me and pointed, I could see our 3 children waiting patiently for us on the trampoline in the front yard, with “Welcome Home Mama” colourfully drawn in chalk on the driveway. I unfolded myself out of the car, received very gentle hugs from the children and my friends, then I was ushered to bed by the furry man. The very first thing I noticed in my own bed, was how very still and silent it was. In the hospital, the mechanized beds had a loud motor that rumbled every 30 seconds and adjusted the mattress into a different position (to prevent bedsores). The electric compression leg sleeves inflated and deflated without stop for 4 straight days, the pump making an additional rumbling noise. The nurse’s station was right outside my hospital room door, so every time a patient hit their call button, an alarm would ring at the nurses’ station. At home, all I could hear were the quiet voices of my friends and family at the dining table, enjoying their Easter dinner, saying their prayers, and then a loud, “God Bless Mama!” before I slipped into sleep.

It was difficult adjusting to life without around-the-clock nurses. Markus and I had to sit down and figure out the schedule for the medications I needed to take, and then set my phone to ring so I could be reminded to take the meds on time. Markus also had to milk, empty, measure, and record the fluid in the 4 drains coming from my body twice a day. And on day 2 back home, I hit a brick wall of pain an hour before I had to take my 5 o’clock Tramidol dose. Markus came to sit beside me in bed, to try to distract me until 5pm rolled around. I tried breathing, hissing, huffing, then I finally gave in and started just crying. At that moment, the kids came home from school, and my son Simon poked his head in the room, “What’s wrong, Mama?” Markus explained, and Simon crawled into bed next to me and gently put his head on my shoulder, patting my arm. Between the two of them, we made it to 4:55pm, when Markus proclaimed we would cheat and gave me the pain meds 5 minutes early. Blessed blessed relief. The next morning, he called the doctor’s office to ask about the dosage, wondering what to do when the prescription ran out (it was only 5 days’ worth). He was gently told that by the 5th day, my pain levels would have receded to the point that extra strength Tylenol would be sufficient to make me comfortable. They informed him that Tramidol was a narcotic, and they only ever prescribed 5 days’ worth of it to any patient. But if I was indeed in dreadful pain by the 5th day, we were invited to call them to see what they could arrange for us. They suggested I take ibuprofen in between my doses of Tramidol. On Day 3, when 4pm rolled around, Markus very wisely suggested we sit in the living room and watch our favourite television show that had recorded while we were in the hospital. 5 o’clock appeared as if by magic. On Day 4, I figured out that I needed to take ibuprofen at 3pm so I wouldn’t have the hour of pain at all. And I began to substitute 1 Tylenol for 1 Tramidol to wean myself off of it completely. Sure enough, by Day 5, the pain was bearable, I had a routine with my showering and the home care nurse visits, and I found myself with enough energy to hobble around the house and eventually the garden.

Only when I stopped moaning about the pain, did Markus finally show me the photographs he had taken to document our journey home from surgery. Only when I was smiling and laughing every day like my old self, did he show me photographs of me directly after surgery, pain etched on my face even in unconsciousness. He showed me the pictures of me and my Medusa hair, me sticking out my tongue stained green from the jello, posts he had updated on Facebook, to tell my friends and family I was still alive and kicking. And finally, he showed me the photographs of my incisions, of my new belly button, of my new breasts. When I began to cry, looking at what seemed to be an impossibly broken body, he gathered me close and whispered, “You are still beautiful and sexy and loveable. I still want you and can’t wait for you to heal so I can play with my new toys. And you know that little blue heart I drew on your right breast on the morning of your surgery? It was still there when you came back to me after surgery was all done. You are still you. We are going to get through this and live long and happy lives together. And I will be here loving you the whole time.”

Well, it’s a good thing I have him on the record about our long and happy future together. After 2 weeks of healing, on April 30th, we packed up the 2 kids and drove back to Edmonton to meet with my lumberjack so he could tell us the final pathology results on the breasts he removed. I stayed awake for the entire drive, and marvelled at how well I felt – no pain at all. Even the teenagers were getting along in the back seat. The sun was shining and it was a balmy 21°C on a Wednesday afternoon. I just knew everything was going to be okay. We left the children in the waiting room, and Dr. Olson oohed and ahhhed over the incredible handiwork of my plastic surgeons, and then he gave me the sandwich. All you parents out there, you know how you’re supposed to give your kids criticism in sandwich form? A compliment, followed by the area they need to work on, followed by a compliment? It’s supposed to work in management too, but I was never very good at it. Dr. Olson is very good at making sandwiches. He made me a Dagwood. We were all on a high in his office, talking about how amazing this surgery was, how symmetrical I turned out to be (I guess it’s not always easy), and how hard the plastic surgeons ended up working on me (they had to re-construct my left side twice; Dr. Olson said a lesser man would have given up). He then clapped his hands and said “let’s get down to the nitty gritty on the pathology. The good news is awesome – we thoroughly inspected the left side, and the results were ‘unremarkable’ with is science lab-ese for ‘GREAT no cancer.’ Your right side was mostly as we suspected: your tumour measured 1.4 cm. It is estrogen and progesterone receptive, so you will be needing hormone therapy and chemotherapy. Your. hair. will. fall. out. But there is an amazing wig program through Cross Cancer Institute – I’m not just saying this. They can make it look like you’re not wearing a wig and help you with the emotional side of things too. It’s only temporary; you can do this. But the great news is that your nodes are clear so there is a high chance that the cancer did not travel. So no radiation. You have a chemotherapy treatment facility in Hinton, so you will only need to come back to Edmonton to meet your oncology team at the Cross Cancer Institute, then receive your ongoing treatments in Hinton. I am going to send your file over to them right away. You go home to heal, and you should be getting a call from them in mid-May to book treatment in June.”

Further reading of the pathology report revealed that sneaky Barnard had little babies growing in my right breast. DCIS is Ductal Carcinoma in Situ. Basically, it’s breast cancer that stays in the milk ducts and grows. I had grade 2 DCIS in the right breast, in addition to the grade 1 Invasive Ductal Carcinoma. It dawned on me that things could have ended very poorly if I had taken a more conservative approach to the surgery. It was a huge relief to me that I pushed ahead and made the radical decision to have my bilateral mastectomy. If I had given in to my big sister’s pressure to do as my mother and aunt had done and just had a lumpectomy, I would have been looking at multiple surgeries down the line, ending in a mastectomy anyway. I feel like that Sesame Street scene: “One of these things is not like the other…One of these things is not the same.” Each of us women is different. Our cancers are not the same. Our treatments are individualized for us based on our particular pathology and our medical history. I am not my mother, I am not my aunt, and I am not my grandmother. My adjuvant treatment will be formulated for me by my own oncology team. Sometimes you have to plug your ears, ladies, to the well-meaning advice of those who are not your doctor and think they know best for you. It’s between you and your doctors, and nobody else gets a say (although I suspect Markus may have slipped a bribe to the plastic surgeons…my new boobs are feeling bigger than my originals…).

When we started this awful roller coaster ride of cancer, I needed a goal to reach for; a short-term goal that I could think about while hissing through pain. I really couldn’t think of anything besides summertime in my garden. One day, Markus caught me wistfully reading posts on Facebook, about my high school friends having a mini-reunion in Washington state; our Taipei American School graduating classes were only handfuls big, and we all ended up being very close over the decades. I had planned to attend, before I discovered my lump, and had given up attending because of my surgery. My furry man cupped my face in his hands and said, “You are going to attend. I will get you there. You just heal and follow all the doctor’s directions, and we will get you there, I promise.” I should lean more on my furry man. He was absolutely right. I was given the green light to fly to Washington the second to last weekend in May, and surround myself with loving friends, before returning home for chemotherapy. That’s Goal #1. Now I need to think about Goal #2…

I’m still reeling a little bit from the news. I sent Markus and the kids to play at West Edmonton Mall so I can take some time to absorb and understand while resting in the hotel room. I have a copy of the pathology report, and after lots of research on breastcancer.org and other trusty sites, I estimate the chemo time to take 3-6 months. Hair should start to re-grow within 6 months of my last treatment. So let’s put that in terms I can understand better. Tomorrow is the 18th wedding anniversary for my furry man and me. By our 19th wedding anniversary, I should be toasting champagne with some peach fuzz on my noggin. By our 20th anniversary, we should be travelling through Europe with a full head of hair, and Barnard far far away in the rearview mirror. And between now and the beginning of my adjuvant treatment, I will heal, I will attend my high school reunion and hug all the grown up kids who knew me when my hair was so long I could sit on it, and I will have one wicked pre-chemo party. Perhaps Goal #2 should be to celebrate our 20th anniversary on the Eiffel Tower, hair blowing in the wind, thumbing my nose at Barnard?

Well, I’ve got a month to gather my strength, a month of delightful days like today, full of family, full of sunshine, and full of each day feeling better. The more happy I cram into myself, the less room there is for Barnard or his damn babies. The more happy I cram into myself, the easier it will be next month, as I walk into the Cross Cancer Institute, to hear the voice of my dad in my head, saying, “Let’s go, Sue-Sue, this will be fun!” One more round on Space Mountain, here we come!

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.

Letters From Narnia

Greetings From Space Mountain (Ch.6)

What Not to Wear (Ch.5)

Farewell, Brave Sentinel (Ch.4)

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Letters From Narnia

Greetings From Space Mountain (Ch.6)

Sharing is Caring!

What Not to Wear (Ch.5)

Sharing is Caring!

Farewell, Brave Sentinel (Ch.4)

Sharing is Caring!

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Archives

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