Signs of Life (Ch. 8)

07 Jun 2014 4 Comments

by Suelinhess in Breast Cancer, Cancer, Faith, Family, Friendship, Healing, humor, illness, Love, Medical, Roman Catholic, support, Travel, Uncategorized Tags: , , , , , , , , , , , , , , , , , , , ,

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

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

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

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

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

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

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

no. chemotherapy.

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

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

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

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

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

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

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

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

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

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

20140607-220432-79472829.jpg

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: , , , , , , , , , , , ,

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.

Image

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: , , , , , , , , , ,

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.

Image

Domo Arigato, Dr. Hashimoto

17 Feb 2013 3 Comments

by Suelinhess in Hashimoto's Thyroiditis, illness, Medical, Thyroid Tags: , , , , ,

If you are old (as my children would put it), this will have you busting out your robot dancing and other foolish moves. For any fellow Hashimoto’s Thyroiditis victims out there, this will become your new theme song. Brain-fog, lethargy, FATNESS, and depression. That’s the rockin’ life we lead, even when treated, precisely because we are not robots and our bodies flux…especially as we age. woo to the hoo.

10 years ago, I had never even heard of Hashimoto’s Disease. My older sister had mentioned thyroid issues after her youngest child was born, but she lives all the way out in Australia, and busy me with my busy life must have been just too…busy…to pay enough attention. So time passes, and I’m around 40, and the family begins to tease me that I’m getting old, becoming absent-minded. I also notice that I am gaining weight, even though we eat healthily and exercise regularly. My hairbrush fills up with hair at an alarming rate, and I am cold all the time. And tired. Oh, so tired. There are days that I can barely get myself out of the bed, and no amount of coffee makes a difference. I would leave a room to go do something, and find myself in the hallway, reduced to tears because I didn’t know why I was there. I worried about dementia…Alzheimer’s… Finally, I take myself to the doctor, who orders blood tests and perkily tells me, “Looks like your thyroid is just not pulling its weight! Do you have thyroid issues in your family?” Do I? When I reached out to my extended family, my big sister gave me all the details of her battle with Hashimoto’s, and my father tells me that he’s been on a synthroid for years. YEARS. Yes. Communication with my dad is another issue to be discussed at a different time… So it turns out Hashimoto’s can run in families and after another round of blood tests for certain antibodies, I get to join the club. No green blazer, no membership card. Just Fat and Forgetful. Not the coolest club, to be sure.

There are all sorts of approaches to treatment for Hashimoto’s out there, from conventional synthroids, to nutritional changes, to incense and prayers (sorry, but that end of the spectrum is labeled KooKoo Land in my book). Normal hypothyroidism is very straightforward. Your thyroid is sluggish, underperforming, you just need to pop the right amount of synthroid and your hormone levels can theoretically reach a normal level. Hashimoto’s Thyroiditis is actually an autoimmune disease. You see, it is my own body, attacking my own thyroid, trying to kill it. On it’s own, my thyroid may have even had a chance to be normal and strong. Instead, it is under attack, and left untreated, would eventually be destroyed. In the olden days, I may have gone to bed and eventually never woken up, slipping into a myxedema coma. But here we are in the 21st century and modern medicine; problem solved, right? Yes…kinda. First, you have the immensely difficult task, in the beginning, of REMEMBERING to take the daily pill. Considering that memory loss is the #1 symptom of this dratted disease, it took me ages to get in the habit. The meds take some time to kick in – so a month of “oops, did I remember to take my pill?” plagued me. Blessedly, once the synthroid started to have some effect, I was relieved to find myself remembering that my contact lenses were, in fact already removed, so I could spare myself the painful digging around in my eye socket, searching for them. And I could climb the stairs in my house and remember, at the top, what it was I climbed them for. My children were especially relieved. I began using their names again, instead of the collective “Short People!” that I had resorted to calling them…The bad news is, some things are stubbornly sticking around, like the fat, and the constant feeling of being cold. The good news is, there is more energy to exercise, and I think peri-menopause is starting to send me hot flashes to combat the cold shivers. My body is a battlefield.

It’s been a few years since I was first diagnosed, and through regular blood tests and medication changes, my thyroid has been doing its best. I am still not normal, but the more I think about it, the more I wonder if I ever deserved that label in the first place. There are 7 pesky little nodules on my thyroid. I call them my 7 Dwarves. Every 6 months I have an ultrasound to make sure they aren’t growing. It always feels strange, after 3 lovely pregnancies, to go in for an ultrasound hoping that what we see is NOT growing. So far so good. And there is always the positive thought that even if the nodules do rise up and revolt, thyroid cancer is probably the cancer you want to get, if you have to get a cancer, as it is the easiest cancer to treat, and the most survivable. I can’t believe I just wrote something positive about the C word.

It’s slightly ironic, having a disease that I can’t forget about because it still bugs me on a daily basis, this forgetfulness. The brain fog is improved, but there are far too many moments when I say out loud, “what was I saying?” and all my friends and family just pat my hand and prompt me to continue. There are huge chunks of my past that I simply can’t recall. My children will ask, “remember when?….” and I draw a blank. Writing helps; I can return to precise moments in time by re-reading journal entries. And oddly enough, cooking helps. Certain smells can transport me to completely different countries, decades past. For instance, raw onions and salami? Flashback to the USSR in 1976. I’m in 2nd grade, my father and some Russian contacts are sitting at our dining table, drinking straight vodka, cutting hunks of salami, popping salty black olives, and biting whole white, raw onions,as if they were apples. The fumes go straight up my nose and make me oh so hungry for a taste. My eyes are watering from the cigarette smoke, and my ears ring with their bellows of drunken laughter.

My children are puzzled by my crystal clear memories of certain things, but my complete inability to remember everyday things, like picking them up from school, or the names of their friends (all the girls’ seem to have names that start with “K” – how confusing is that?!). My son, who is too young to have learned about Pavlov’s dogs in school, brightly suggested, “Hey Mama, maybe if we give you a cupcake every time you pick us up from school on time, you can get it right!” Okay, so I forget some important things. But I also forget some things that are too painful to hold on to. That smell of cigarette smoke? There is nothing I hate more. Cigarette smoke reminds me of chain-smoking, abusive parents, getting carsick on long rides, and Mom dying of lung cancer. No smoke, no memories. Fresh clean air and Hashimoto’s means fresh, clean slate in my brain. Hashimoto and I have a tentative truce. I let go of some of the good, and am grateful some of the bad goes with it. So sometimes I say it sarcastically, but sometimes sincerely, Domo Arigato, Dr. Hashimoto.

%d bloggers like this: