Greetings From Space Mountain (Ch.6)

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!

1 Comment (+add yours?)

  1. Helena Ross Brown
    May 02, 2014 @ 02:10:13

    Oh beautiful Sue…. WOW…. I am numb with shock and dumbfounded… for you to have gone through all this and i didn’t even know what was going on.

    Thank you for sharing this journey with all of us and for (as always) documenting it so eloquently. I love you Sweetie and I am so sorry that as a ‘friend’ I have been sadly lacking in keeping in-touch…. even with FB….

    Praise God for all the miracles and guardian angels you’ve had along the way. I am truly thankful that you are doing well now and celebrate the victory of you overcoming this horrible battle.

    I will continue to lift you and your beautiful family up in prayer and am so thankful that you have such an incredibly supportive and loving husband in Markus.

    xoxoxoxo

    Like

%d bloggers like this: