I’ve Got MacGyver, Paul Bunyon, and The Suepremes – Barnard Hasn’t Got a Chance (Ch.2)

Today, March 12th, my breasts and I met my surgeon in Edmonton. All I knew about the doctor in advance, was that the name was Dr. D.W. Olson. Images of characters from children’s television shows floated through my mind. I pictured Arthur the aardvark’s little sister D.W. (old PBS animated series), married to Nellie Oleson’s little brother Willie (from Little House on the Prairie), sporting a white coat and chopping off boobs. That, plus the warning from my Nurse Navigator (more on that later), had me a little bit nervous to meet the Knife. “Sue, I want you to brace yourself and not put too much store in the surgeon’s manner. Surgeons can sometimes come across as clinical and lacking empathy. But those characteristics are also the very same characteristics that make an excellent surgeon; they spend most of their time with you when you are unconscious, not chatting with you. If your questions are answered and you feel confident in the surgeon’s experience and explanation of all of your options, don’t let the bedside manner dictate whether or not you choose this one to be your doctor.” Needless to say, I was a fretting bundle of Useless during the drive.

It takes 4 hours to drive from Jasper to Edmonton, so Markus and I kissed the children goodbye and shivered into the car at 6 o’clock this morning. During the boring and seemingly endless drive, we had plenty of time to discuss what we hoped to achieve with this visit, and what questions to ask the doctor while we were in his office. Being in the early stages of my breast cancer journey, I have to be honest that Markus and I are also struggling a bit with our new roles. The furry man wants to be my best cheerleader, and take everything onto his own shoulders. I am much more practical, and I know that even superheroes can burn out unless they take a break or ask for help. These are early days – I want him to mellow out and save his energy for the hard days of clearing drain lines dangling out of my chest, and cooking and cleaning if I need to spend time as a chemo zombie. He thinks I should let go and let him take charge. I think he should reach out and ask a few people to bake some lasagnes when I go in for surgery down the line. Hess Tough vs. Treppenhauer Stubborn…much head butting and growling ensued. Markus is reading a very good book titled: Breast Cancer Husband; How to Help Your Wife (and Yourself) Through Diagnosis, Treatment, and Beyond. It has taught him invaluable things, like how to read pathology reports, how to write down everything the doctors say to me, and how to stay calm in the face of a frightened PMS-ing wife who seems to be losing her mind. Normally my furry man is the light in my life, keeping me smiling and laughing. This morning, his own worries plus my hen-pecking transformed him into Serious Markus. I hate Serious Markus because then we are BOTH grumpy. In the parking lot of the doctor’s office, I told him I don’t like Serious Markus; that I want my funny man back. He pointed a finger at me (I won’t say which one) and said, “Then stop BOSSING me, woman! Hess Tough sucks when it’s me that gets it. Trust me. I’m going to take care of you. I got this.” Message received; Hess Tough Torpedo Guns have been aimed elsewhere.

Enough soap opera; back to the Journey! A Nurse Navigator is the main angel in a special program that we have up here in Paradise (aka Canada). The Alberta Comprehensive Breast Care Program takes patients that are at high risk for cancer; patients like me that have discovered a lump, or had abnormal mammogram results. We are pulled out of the sometimes confusing mainstream of our national healthcare system, and fast-tracked toward the appropriate doctors, procedures, and cancer centres that we need, cutting to the front of the line of any waiting lists. If further tests come back negative, those patients are bid farewell are sent back to real world. The rest of us keep marching forward. When admitted into the program, we are each assigned a Nurse Navigator; our medical guardian angel/advocate. My personal angel’s name is Diana. She is a nurse, packed with ages of experience in the field of breast cancer treatment. She handles most of my appointments, calling me to tell me when and where, and how to get there. She spent what seemed like hours on the phone with me, as soon as I got home from hearing the worst 3 words I’ve heard in my life, last week, “You have cancer.” My family doctor is a moron and actually could NOT explain most of my pathology report, and “didn’t want to go out on a limb” to explain anything further to me, for fear he would be held liable if I misunderstood, blah blah blah, welcome to Jasper. So I had asked for a printout of my pathology report, took it home, and looked up every single word I didn’t understand, and then I called Diana. She confirmed what I had concluded, and in a very gentle voice, began to tell me about the road I would need to travel to reach wellness. She spoke for so long, reassuring me, sharing what resources this wonderful program had to offer, told me that she would be mailing me a big packet of information for me to read through, including a book to help my children cope with my new illness. She told me that I would be overwhelmed with information, and to write everything down. She told me to be careful about choosing websites to read about breast cancer, and she gave me a list of good sites to explore. On the spot, she booked me in to see a surgeon, and told me that she was there on the other end of the phone if I ever felt confused. And if she was ever away from her desk, she told me that her office was full of professionals ready to help; that there were therapists and social workers on-call if anyone in the family ever needed to talk to someone about how they are feeling throughout this time. How IS it that this beautiful country can create such a brilliant program to take special care of frightened, vulnerable women, without having to worry them about how they would manage to pay for everything? My Nurse Navigator told me, “Mental Health is just as important as Physical Health. Just treating the cancer with medicine would be pointless if, in the end, if you are an emotional and financial wreck. We treat the whole person.” Reason #437 to love Canada.

After the showdown in the parking lot, Markus and I entered the Meadowlark Health Centre in Edmonton. We were immediately greeted by a bevy of sweetly smiling receptionists. Markus and I looked at each other, our faces saying, “We’re not in Jasper, anymore, Toto.” We were 45 minutes early and thought we were in for an enormous wait (one is never seen earlier than 30 minutes past their scheduled appointment time in the Jasper clinic). I didn’t even have time to put down my purse, when a lovely lady came to collect me for a breast exam. I followed her down a long corridor to a private room, where I donned my lavender gown and waited for my aardvark surgeon. A knock on the door, and a perky young blonde with a ponytail entered, with a pimply teenager in tow. She introduced herself as Dr. Olson’s (I found out the spelling was different from Little House on the Prairie, bummer) Chief Resident. Her name is Dr. MacGyver. I kid you not. I’ve got MACGYVER on my team! And she introduced her skinny little sidekick as Mark, a medical student at University of Alberta. Yay, I get to flash my boobs to a crowd! After extensive questioning, MacGyver proceeded to palpate my breasts very carefully to confirm location of the tumour, etc. Then, she invited sidekick to join her from the edge of the room, where he was nervously nodding his head, and asked him to palpate my right breast to see if he could find the tumour on his own. I had to keep a straight face as he timidly reached out and poked at my boob like it was a bowl full of bad jello. Poor boy. Anything I can do to bring added education to the world, I am happy to do. Perhaps it was the first breast he had ever met, because as soon as he thought he’d found it, he jumped back to his wallflower position.

After the breast exam, MacGyver asked me if I had any questions from my pathology report, and I said that I am an American, so please forgive me, but I didn’t understand why my tumour was measured in millimetres, yet all literature about breast cancer discusses tumours in centimetres. She and Mark smiled at the ignorant American, and kindly explained that it was because my tumour was smaller than a centimetre. Well, duh. That shows you just how flustered I am these days. Then MacGyver started talking about hormone receptors, and I was like, “WAIT. Your pathology report doesn’t match my pathology report!” As if it could be possible to have an even lower opinion of my Jasper doctor, it turns out he only gave me HALF of my biopsy results. When I had asked about hormone receptive or not, or HER2 and triple negative, he flapped his hands at me and told me they would tell me that after my surgery, when they had removed the tumour and examined it further. One more medical lesson learned: DON’T BE A SHEEP!  So MacGyver told me that my tumour is estrogen receptive, which is well-treated with hormone suppressant chemo. Hello, Menopause. Then, MacGyver and Pimple Boy left to find the doctor.

After a few minutes alone, I heard a booming voice coming down the hall, “WHERE IS THE AMERICAN!” and a bearded lumberjack in glasses swept into the room, replete with plaid flannel shirt. He reached out his hand and said, “You must be the American! I’m Dr. Olson. So pleased to meet you! What on earth brought you to Northern Alberta?!” I explained about the furry German man and Fairmont, but that actually I’m only American on paper, having grown up all over the world. And he laughed, “AAAHH, a nomadic type – so I can’t even ask you where you’re from, eh? There goes my next conversation starter.” He blew my worries about cold, clinical, aardvark-Nellie-Olsen-sibling-surgeon right out of my mind. Tension melted out of my shoulders almost immediately.

After another breast exam, Dr. Olson (aka Paul Bunyon) went out to get my husband. I could hear them in the waiting room, Paul Bunyon calling out, “I’m looking for MARKUS! And upon meeting him, declaring, “So you’re a FAIRMONT man! Yes, your wife and I have been talking about you. She told me everything. Come this way!” He arranged us in the small exam room, “Sue, you’re the Queen,” (how did he KNOW?!)  “so you get the throne. Markus, you sit next to her. MacGyver, you sit in this chair. And Mark, you’re going to have to pretend to be the patient for the day and hop up on this exam table; UP you go.” Then he sat down on his stool, faced me, and said, “Ok. Now let’s get serious. We have much to discuss, and you have some decisions to make.” In the blink of an eye, Paul Bunyon turned into a doctor. He explained that there were many choices for an average woman in my shoes. Breast cancer starts in the milk ducts; most breast cancer stays in the ducts, just growing bigger. Mine is invasive, and has escaped from the duct it was born in, and has microscopically begun to get around in there. With a relatively small tumour, likely no cancer in the lymph nodes, many women just need a lumpectomy and radiation, and they may never have a recurrence of breast cancer for the rest of their lives. He explained that radiation is typically 5 minutes of focused X-rays, 5 days a week, for 5 weeks. There may be skin changes, there may be slight burning, there might be some fatigue, but it would be nothing like my mom’s radiation 30 years ago (she used to laugh about how one of her nai-nai’s had a very nice tan from the radiation). Then he said my situation was slightly different, with the family history of breast cancer. He said, “yours could have been a hereditary thing, or it might not be. You can take a genetic test, like Angelina Jolie did, but you also need to understand that currently, who ever takes it and gets positive results, will be refused life insurance applications forever, and their children will also never be able to qualify for life insurance. It will be permanently on the records. Those rules might change in the future, but that’s how it is for now.” Whoah. He followed that with other possible options for me. I could have a skin-preserving mastectomy on one side, with reconstruction to include an implant to match my “generous” other side. I asked about a bilateral mastectomy for my peace of mind. He said it could be done, but that would have to be my request. He said he could do that and preserve the nipples, and I asked “what about the odds of recurrence of cancer in the nipple, I heard it was a considerable risk?” He replied, “Well, true. The nipple is the front door; all the milk ducts and glands lead to that – it goes to reason that cancer might appear there in the future.” I said, “I could always get nipple tattoos…” (Look at me, wild woman thinking about tattoos!) and he pointed his fingers at me and said, “YES, you can. And there is nipple reconstruction too. You have LOTS of choices.” My mind spun as he offered even more on the breast treatment buffet table, the whole time my furry man scribbled furiously in our Journey Journal (we knew that we would forget 1/2 of what we were being told). Regarding reconstruction, there are fillers made of man-made materials (saline/silicone implants), and fillers made with Suzy Creamcheese-made materials (my own skin, muscle, and fat, from back, abdomen, butt, or inner thighs). During this discussion, he mentioned, “You have ptosis.” We looked blankly at him. He said very tactfully, “Well, when women have, er, generous breasts, over time, they tend to lose volume and they are not as perky as they used to be…” I was like, “OH! Yeah, after 3 kids, they are not at all what they used to be. That’s okay, they fed 3 children; they did their job.” And now I have a proper word to use when referring to my gravity-stricken breasts. “National Geographic boobs” is too much of a mouthful. I have ptosis. Sounds more mysterious.

Toward the end of our appointment, having weighed all the possibilities, I decided that I would opt for a bilateral mastectomy, with immediate reconstruction. Bracing myself for my doctor’s disapproval of what even my own sister has deemed an irrational decision, I was so grateful to hear him respond, “This is your choice. It is your body, it is your fight, and only you can decide this. There is something to be said about the breast cancer phobia that someone with extensive family history like yours might be feeling. It weighs heavily, and if this brings you peace of mind, that must be taken into account and respected. So skin-saving bilateral mastectomy with immediate reconstruction it IS!” He turned to Markus, pointed a finger, and said, “Write this down, Scribe. ‘Dr. Blair Mehling.’ I will set you up to meet him after you have a sentinel node biopsy.” If Dr. Olson is my lumberjack Paul Bunyon, then I suppose his plastic surgeon friend, Dr. Mehling, must be Babe the Big Blue Ox! Can’t wait to meet him…wonder if he will have horns…

A sentinel node is the very first lymph node that the nasty little cancer cells would bump into on their way out of the breasts, as they try to sneak into the rest of you. If there are cancer cells in that first lymph node (the sentinel…the lymph node on guard duty, get it?) then it shows the cancer is on the move; more lymph nodes need to be biopsied, and your adjuvant treatment (follow-up treatment to surgery; radiation, chemotherapy, etc) is adjusted to be more aggressive. The more information the doctors can glean from the sentinel node biopsy, or from any tissue with cancer for that matter, the better armed they will be in the fight. Before the operation, they will (brace yourself) inject a radioactive dye into my right nipple. Guys, hearing or reading that for a woman, brings a similar feeling to you reading about injecting radioactive dye into the little buddy in your pants. OW. Then, they will put me under general anaesthesia and use a Geiger-counter like a metal detector to probe into my armpit. The first lymph node to light up is the sentinel node. This good soldier node will be cut out and sent to a lab for analysis. If there is cancer, we will regroup. If there is no cancer, rejoice and full-steam ahead with our booby going-away party!

When I was first diagnosed, my friends and family quickly rose to my defence, with the collective battle cry, “You will kick cancer’s ass!” On my Facebook page, one day, my sweet furry man was commenting about that bastard cancer, and autocorrect oh-so-helpfully inserted “Barnard” instead. My cousin Gaby took it one step further and envisioned cancer as the stinky Parisienne pickpocket who tried to steal my iPhone while we were visiting the Eiffel Tower last year (a whole other story). Barnard the Parisienne has developed into a full-blown effigy who is after more than my iPhone. He wears a dirty beret and dangles a perpetually smoking cigarette between his decaying yellow teeth. My Facebook page now has a middle finger salute to Barnard, a toast to kicking Barnard’s ass, etc. Occasionally, someone who hasn’t been paying attention will comment, “Who the heck is Barnard?” Now y’all know. Barnard is goin’ DOWN.

So now the initial shock of discovery is over and it seems this journey is turning out to be more a race of endurance, rather than one of speed. I need to take my own advice that I gave to Markus this morning: calm down a little. I need to save my strength by not using it to panic. Be the turtle, not the hare. I would hate to run out of energy close to the finish line. Now I wait for April 3rd, to have my sentinel node removed. Between now and then, there should be less worry, and more living. There will be a thousand moments of joy; a thousand chances to smile or laugh. And I must be fully present to grab those moments and savour them. This journey is turning out to be adventurous, indeed, with colourful characters to meet all along the way. Diana the Nurse Navigator angel, MacGyver and sidekick Pimple Boy, Paul Bunyon, possibly Babe the Big Blue Ox Plastic Surgeon, and my parade of angels: my CIBC Run for the Cure team; 30+ strong women and men, coming together from Alberta and all over the world, to raise money for the Canadian Breast Cancer Society. I’m Suzy Creamcheese and they are The Suepremes. Say it, SAY IT: I’m a Chinese Diana Ross, baby! Our team would love to raise $9000 by October 5th, when we will come together and walk and run side by side. By that time, I hope to be healthy and well. Here’s the link if you’d like to help us collectively kick Barnard’s ASS: http://www.runforthecure.com/site/TR/RunfortheCureFY15/PrairiesNWT?px=3564263&pg=personal&fr_id=1851

I hope you enjoyed Chapter 2 of Follow the Breast Cancer Road. I expect many of you read, “BLAH BLAH BLAH MacGyver BLAH BLAH BLAH lumberjack BLAH BLAH BLAH National Geographic Boobs” and left this blog with your head spinning. Don’t worry. You and I, we have much in common. I am going through my days in a similar state. “Blah blah blah malignant blah blah blah absolute outcome blah blah blah wait 2 more weeks.” I want more “blah blah blah Mom I can burp the abc’s blah blah blah honey give me a kiss.” And flying monkeys; I want flying monkeys. If I have to be on this road, send out the flying monkeys…I already gave birth to the lollipop kids years ago.

Ganbaru 頑張る! (Ch.1)

(Facebook post from March 2014)

I learned a few new words today. The first words were Infiltrating Duct Adenocarcinoma. In layman’s terms, it means breast cancer. Words that I have dreaded for 30 years since my mom was diagnosed while I was in high school. Statistics told me that the chances of it striking me if my 2nd-degree relatives (grandmother, Aunt Barby) had it, are higher than average. Statistics told me that the chances of it striking me when a first-degree relative (Mom) had it, are even higher. I think my sisters and I held our breaths for years, waiting for one of us to come forward with the awful news because when you have our family history and you add a sister with breast cancer on top of that? It’s like really bad compound interest on a maxed out credit card; you’re probably going to get a call from that creditor for payment … So a few days before Valentine’s Day, I felt the lump, and the first thought was, “Oh no, JoJo and Annie…”

As I was out of town enjoying the best Valentine’s Day I’ve ever had, I ignored that lump like it was a whining child in the backseat of the car. I would deal with it when I got back home. As soon as I came home, I saw our family doctor and he sent me straight to Edmonton for a mammogram/ultrasound. My furry man (Markus, my husband) and I kept telling each other, “This could be nothing. Let’s not freak out until someone officially tells us to freak out.” I called my Aunt Barby, since she has been a survivor for 14 years, and she briskly told me, “Now, don’t you go hanging crepe, Sue. Even if the worst is confirmed, so much has advanced in breast cancer treatment in the last 14 years. You can do this. You hang tough and you don’t forget to look out for your furry man. After all, you’re a Hess and you are Hess Tough. He has a slight disadvantage.”

Although there are many critics of some of the wait times in a national healthcare system, it is almost a magical thing to see how quickly people can move in such a system, when things are urgent, here in Alberta. I went in for a mammogram/ultrasound (normally several weeks – months wait), and after a closer look, they asked me to overnight in the city and come in first thing in the morning for a core needle biopsy (normally a few weeks’ waiting time) on the lump and a surprise lymph node that looked “suspicious.” I turned to the radiologist and asked in a shaky voice, “May I see what you see on the ultrasound? Why do you think it’s suspicious looking?” She obliged, showing me the lump, which looked icky and alien, and the lymph node, which turned out to look EXACTLY like the Death Star, I kid you not, complete with the narrow alley that Luke Skywalker had to fly through to blow up the place. I thanked her and held it together until I reached the parking lot and melted into a blubbering mess behind my steering wheel while on speaker phone with Markus. After soothing me and letting me cry for a while, he waited until I calmed down a bit and said one very true thing, “Honey, we have been waiting for this for years, haven’t we? We always knew that this might come up, with your genes. Now that the moment is possibly here, I know we can do this together. Our family can do anything.” So I went back to the hotel room and for the first time in my life, raided the Honour Bar in the room. I binged on Pringles and chocolate and ordered cheese from Room Service. Then I went to bed at 5pm to try to sleep away the time until my morning appointment with the giant needles. Had the craziest dreams from the chips, cheese, and chocolate, and woke up completely unrefreshed.

The needles were super big AND they had a spring-loaded trigger that reached out a mini-claw to snip off core samples of the lump and lymph node. I swear the trigger snapped exactly like my automatic cookie press at home. Each “SNAP” made me jump, and when the radiologist, Dr. Ling, muttered, “darn it” I knew she would have to try again. She apologized and said, “I’m so sorry. I need 4 core samples from each site and these tumours and lymph nodes don’t just sit there nicely. They’re slippery little suckers…like..like…” and I blurted out, “Like bubble tea taro bubbles?” She burst out laughing and said, “YES, EXACTLY! I have never thought of that comparison, but they are JUST like bubble tea…now I don’t know if I ever will drink bubble tea again…” So laughing together and with me doing my Lamaze breathing to stop panicking, I got through that procedure. We taped up the two little tunnels in my breast and armpit, and I drove 4 hours home into the arms of my loving family.

At first, I thought I would wait to tell the kids anything, only sharing if the news was bad. But I made it back home in time to pick them up from school, and Hanna and Simon immediately started to cry, and asked me, “Mama, are you going to die?” I guess not knowing CAN be much worse than knowing. And they jumped to the worst case scenario when they found out I had to stay overnight in the city for more testing. So I decided to tell them absolutely everything. Of course, I had to give them the all the possibilities, which did include possible death, but considering I’ve been having annual mammograms since I was 30, the tumour could only be, at most, a year old. And I caught that sucker all by myself in a self-exam. And I reminded them, I am Hess Tough. We had a big cry and a big hug, and luckily, they went back to being normal children.

The last week has been miserable, waiting and wondering. I used the time to read up on anything I could find about all the possible outcomes, all the types of breast cancer, all the potential treatments. I tried in vain to find cases of a negative biopsy on both a tumour and a lymph node. The very worst part of all was not telling anyone. I didn’t want to worry my dad if it turned out to be benign, I didn’t want to put my sisters into a panic, I didn’t want to burden friends, and even though I am the first to share everything with friends and family on Facebook, I couldn’t bring myself to say it out loud.

Normally I give up Facebook for Lent. Yesterday, I realized with a start, “TOMORROW IS ASH WEDNESDAY.” How was I supposed to go through this ordeal in this Godforsaken place, with most of my friends and family so far away, without my touchstone? With Facebook, I log in and see that you’ve had your morning coffee, that you share my teenager problems, that you laugh at the jokes I love, and that you care about me. I have conversations and I give sympathy or lend a helpful shoulder for anyone to cry on. It could be 3am here in Canada, but my friends in Taiwan, my cousins, friends, and sister in Australia, my old friend in Turkey, and my other loved ones around the world might be awake to have a chat. For the first time, I realize that this would be the wrong Lent to take a Facebook hiatus. This would be the time I would need my friends the most. I bargained with myself, “If the news is good, I’ll give up my FB connections for Lent. If the news is bad, I’m going to ask my friends and family to lend me their shoulders.”

So here I am, on Ash Wednesday, letting you know that you won’t be getting a Lenten break from Suzy Creamcheese this year. One of my closest friends, Laurie, called me from Arizona tonight, marveling, “Sue, what timing you have. Here we are on Ash Wednesday, getting ready to begin a spiritual Lenten Journey, and you have ahead of you the biggest journey of all. Don’t forget that you are not alone, that you can glean strength from all those who love you, and from your faith.” And then I started reading some more and I learned the best new word of all: Ganbaru (頑張る). It’s a Japanese word which some say means “to do one’s best.” But to the Japanese people, it means more than that. It means to do more than survive; it means to “commit oneself fully to a task and to bring that task to an end.” And I hope my furry man, my sweet precious children, my family, and my friends, will Ganbaru by my side. I’m going to do my usual oversharing. I understand that some of you don’t know me as intimately as most so this might gross you out. Don’t worry if you need to bow out and block my feed for a few months. I will see you on the other side. And I am determined to do that – to get to the healthy side of summer. With you to keep me company on this journey, and Ganbaru and Hess Toughness…this shitty little disease hasn’t got a chance.

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