Have you ever talked to something inside your body?
This week I received more good news… another scan that shows, well, not much, actually.
“No change from last scan” Translation? Stable.
“No enlarged lymph nodes in axillary region” A year ago I had a golf-ball sized tumour in this area. It was neither pretty nor comfortable… almost like having an ankle in my armpit… very sexy…
Apparently the ‘undefined’ area in the clavicular region (as described in my last scan in April 2021) wasn’t even worth mentioning on this CT report. A year-and-a-half ago, this tumour, ‘she’, was trying to kill me…
‘She’ was invading every space possible… major blood vessels, lymph nodes, nerves, and my clavicle bone…
So I named her… Daisy. I love Daisies, so much so that I chose them for my wedding bouquets, along with my absolute favourite, the gerbera daisy. I considered names like Bertha or Gertrude, but I found myself frightened at the mere thought of such intimidating characters living inside my body. So I chose Daisy instead, to maintain positive energy and conversations within.
Thanks to Wikipedia for a picture of Bellis perennis, a.k.a., a Daisy
But NEVER (ever) in my 32 pre-cancer years of life did I picture myself chatting, out loud, while walking my neighbourhood, to something (someone?) living inside of me. But I did, because hey, what did I have to lose? I was dying. People I have never met have seen the inside of my face, neck, wrist, thigh, calf (and who knows what else). I have pooped in front of nurses. A few peering eyes or questionable glances at the girl speaking absolute nonsense to someone named Daisy, who was likely perceived as an imaginary friend, was just another peculiar part of my journey.
Not quite as interesting as peeing my pants in a cafe bathroom in Greenwood when traveling back to Nelson during my radiation saga in 2017.
But that’s another story…
And so, on these long walks, I informed Daisy that if I died, she would also come to a fatal end. I wonder if she had ever considered this fact? I suggested she shrink a little so we could thrive together. I didn’t ask her to leave completely, but rather to refrain from killing me. As I watched the winter turn to spring in 2020, our conversations became lighter, the tears shifted to smiles (well, half-smiles, for those of you who have seen my try to smile with only one facial nerve), and with the shrinking (or dying) of Daisy, I began to feel alive again.
I haven’t chatted with Daisy in quite awhile. I wonder if she is still there. My radiologist didn’t feel the need to mention her in this latest CT scan. I guess I cannot expect medical professionals to acknowledge my flower-power tumour when she is fading away.
But I will never forget this growth inside me, the conversations we had, and the transcendence of the spiritual that comes with the fading of the physical world; in other words, while staring death straight in the face. This state was a unique experience, one I wish we could all experience without death looming around the corner. But alas, I guess some experiences must be saved for these unique moments.
This post was, really, a long way to share the good news that my body continues to respond incredibly well to treatment. ‘You have a few months to live’ has turned into 19 months of living well, enjoying life and considering how life might look beyond terminal.
When reading the draft version of this blog to my critical editors (aka, my children), my almost-13-year-old, who is well-educated in all-things-cringey, suggested I could have simply written “CT scan went well, thanks for reading, not dead”
And just for fun, a picture of these acclaimed editors, both suddenly (at least) 5′ tall!
My sweet lovelies enjoying the hammock at Grandpa and Grandma’s house in Saskatchewan.
The last few months have been good… amazing, really, with positive reports from doctors, great CT scan results… these are answers to prayers from hundreds of people around the world.
And with these good results and amazing periods of stabilized health, come energy, hope, and the glimmer of a future. I realize that it’s time, time to write, to tell my story, to share my challenges, and to bring hope to those who have or continue to suffer under similar circumstances.
My story… as promised…
It all started with a sore in my mouth that refused to heal. Despite a soft diet, essential oils, a mouth guard, stitches… the sore only got worse, to the point of an infection that left me with a lump in my left cheek and intermittent excruciating pain. Finally I saw the specialist, an Ear, Nose, and Throat doctor, on January 3, 2017. He took one look in my mouth and told me he was concerned. A couple years later he told me his heart dropped when he looked in my mouth, as he knew right away he was looking at cancer. I was diagnosed the following day. When we think of moments that change our lives, I will always remember that moment… the phone call, the words, the disbelief, the sudden grief, the loss of identity, so many emotions defined by one moment. My diagnosis was oral squamous cell carcinoma of the buccal mucosa. When the tumour was removed five and a half weeks later it was 3.9 centimetres.
And that was my first surgery, the beginning of a long and painful journey that is far from over. On February 10, 2017, I had a left buccal resection, with a left neck dissection and right radial forearm free graft, and a tracheotomy. In layman’s terms, the tumour was removed from my cheek, and the inside of my cheek was rebuilt with skin from my wrist, lymph nodes were removed from my neck, and I had a tracheotomy for a few days post surgery.
February 10, 2017 at Vancouver General Hospital just before my first surgery – the lump in my left cheek is all tumour
My first surgery was horrible. I remember waking up, which is the only surgery I hold the memory of waking. I thought, “there is no way they could be done already.” But I saw the clock, 4:15… and then I started feeling the pain, the discomfort, and the many, many lines attaching my body to machines.
Someday I might go into the suffering that comes with major surgery, but that story is for another day. All I will say is this: the recovery I had to endure, twice, was, by far, the worst physical suffering I have ever experienced.
But I healed, and I felt good. I lost 25 pounds in the two months leading up to my surgery and the hospital recovery. I was gaunt and weak at 110 pounds, but I gained 15 pounds before starting chemotherapy and radiation at the beginning of May 2017. Chemo was not fun… I was nauseous and so, soooo fatigued. Thankfully my chemo was only to enhance the radiation, rather than killing the cancer itself, so I only had two doses, four weeks apart. However, I had radiation 5 days per week for 7 weeks, a total of 35 rounds of radiation. I tolerated radiation fairly well, but lost my sense of taste around four weeks, and had considerable pain in my mouth for the last two weeks. I watched others go through much worse.
Strapped down and ready for another round of radiation!
I saw my family most weekends when I was in Kelowna for radiation. Leaving them on the Sunday before treatment was always emotionally painful. I cried a lot, recognizing the unnatural stage of my life. A mother is meant to be with her kids, raising them, supporting them, not away from them, fighting for her life. The most difficult part of this hell is the impact on my kids. They have been through too much, and for much of this, I was not able to support them adequately. This part is heartbreaking, an absolute anguish for any parent.
The feeling of being ‘done’ is incredible. I waltzed out of the Kelowna Cancer Agency ready to move forward with life, to be home with my family. On June 16, 2017, I was cancer-free!
Only I wasn’t. We use the term “the cancer came back”, but this term is incorrect. The cancer wasn’t ever gone in the first place. I didn’t beat it. It was still there, but this time instead of forming a tumour in soft tissue, it went into bone… into my jaw.
I cannot tell you the worst day of my life. Was it January 4, 2017 when I was told I had cancer? Or July 19, 2018 when I was told I still had cancer, that treatment was not successful? Or could the worst day of my life be December 17, 2019 when my prognosis became ‘terminal’? These days are all horrible, each one holding its own level of devastation. But July 19, 2018 was a bad day, one of my worst, because ‘returning’ cancer was a bad sign…
My first recurrence in July 2018 resulted in another big surgery on August 28, 2018… left fibular flap reconstruction of the left mandibular defect, left mandibulectomy, neck dissection, and tracheotomy. In other words…? The cancerous portion of my left jaw bone was removed and replaced with my left fibula (a bone in the calf that we can, apparently, function without), more lymph nodes were removed from my neck, and once again I had the dreaded tracheotomy.
Recovery from surgery number two was worse than the first, despite being very similar. The knowledge of what I had to endure made the experience so much worse. Plus, I got an infection, which resulted in an extra three days in the hospital. And I hate, HATE staying in the hospital. I did not do well emotionally…
August 28, 2018 The moments before my second surgery, desperately trying to be brave despite knowing the difficulty of my impending surgery and recovery
Surgery number one had very little impact on my appearance, unnoticeable to almost everyone. Surgery number two, however, required the removal of some tissue from my face, leaving me a little unsymmetrical. I wish I could have this face back now, though. I could still smile… and blink… and move the left side of my face…
In November 2018 I received more bad news… I had another tumour, on the left cheek, this time on the outside. Another surgery… a left facial resection and bilateral advancement flaps. Goodness, this sounds like they removed my face! This surgery was on December 11, 2018, my sister’s birthday. I guess I didn’t get a good omen from sharing my surgery with my sister’s third-39th birthday, because my next tumour was diagnosed the following February, in 2019.
This diagnosis hit me hard. The tone had changed among my doctors. I heard defeat in my surgeon’s voice. But another surgery was booked… on my 35th birthday.
And so I turned 35 in the operating room, and fell asleep to the entire surgical team singing ‘Happy Birthday’ to me, as instructed by my dear surgeon. This surgery included a left parotid resection and all overlying skin resection full-thickness, including the upper sternocleidomastoid muscle, and a facial cervical rotation flap closure and drainage of submental abscess. What the heck does this all mean? I had skin, cancer, and muscle removed from the region around my left ear… oh, and I also had an infection, which was cleaned during surgery, but also resulted in a six-day recovery period in the hospital until the right doctors could figure out what to do about this damn infection. Did I mention my left facial nerve was damaged during this surgery? I lost control over the left side of my face… I lost my smile, on my birthday. Happy fucking birthday to me.
I usually maintain a positive attitude, but losing my smile was incredibly difficult. Anger is a natural response to grief and loss. I will write about this experience one day, but today is about the chronological story.
After six days in the hospital my surgeon came to see me… to deliver the difficult news that I needed another surgery… the results of the surgery showed positive margins, which means I definitively still had cancer in my left cheek. I was devastated. But let me tell you, the words from a doctor are powerful, and in my hospital room he told me “This tumour has made me really angry. But I haven’t given up on you, and neither should you.” Then he hugged me and let me cry on his shoulder. Despite my grief, my sense of loss, my overall hopelessness, I decided to continue to fight. What choice did I have? Either he would ruin my face removing the cancer, or the cancer would slowly ruin my face on its own.
The days and weeks that followed were dark, a very low time as I grappled with multiple factors, including the fact that I STILL had cancer, the devastating details of my next surgery… removal of part of all of my left ear, and the loss of control over the left side of my face. Part of me wanted to die. The first time I said these words out loud I burst into tears. I felt defeated.
Have you noticed the pictures have stopped? I hate pictures of myself now. I miss my pre-cancer face.
On April 9, 2019 I had the next dreaded surgery… composite resection left face, parotid facial nerve, masseter muscle, mandible, posterior belly of digastic muscle and styloid process, and left neck dissection… basically the left facial nerve was now gone with no hope of ever recovering function of the left side of my face, and a big chunk of my left face was removed and replaced with tissue and skin from my left thigh. And yes, another neck dissection, which means more lymph nodes removed. I had an incision about 10 inches long on my left thigh, and that thigh now has a funky shape with a very obvious scar. My thigh has is character, this does not bother me. But I woke up with my left ear… with only a tiny part of the lobe removed, which they discovered was cancer-free, and therefore, did not require full removal. I am so thankful for my left ear.
Two weeks later I found another lump… and this tested positive, only, when it was removed surgically it actually was not cancerous. But I had a surgery anyways, on May 28, 2019, my father-in-law’s birthday. There seems to be a trend here…
Two weeks prior to this surgery I felt another lump in my neck, and it grew fast, from the size of a pea when I first felt it to 1.5 centimetres when it was removed. So the false positive that had occurred (unknowingly at the time) a couple weeks prior was a blessing in disguise as the surgery was already booked. This new tumour in my neck had grown outside the lymph node and on to the left accessory nerve and sternocleidomastoid muscle. But this surgery has a simple name this time, left radical neck dissection, which means my neck was opened up and cancer and lymph nodes were removed, in addition to the left accessory nerve and sternocleidomastoid muscle.
Then I had a break… an entire three months until I found the next tumour, just a tiny one on my left neck… resulting in a left neck dissection, but locally in Trail on September 17, 2019, the only surgery I would have that didn’t require travel to Vancouver.
A routine PET scan in October 2019 showed a suspicious area in front of my left ear… so this area was removed on November 5, 2019, with a surgery being called a left parotidectomy (although the parotid gland was removed a year prior, so who knows…) The results of the surgery were good, with no cancer found in the tissue removed. However, by the time I received these results, I had found not one, not two, but three new tumours in my neck, one on the right side.
And they were all cancerous. For the first time, my surgeon told me he was worried, and wasn’t sure he could remove it all. He was the third doctor to give me this news. I knew going into my surgery that I would likely come out with a terminal diagnosis. On December 17, 2019, my dad’s birthday (see the trend?) I had a left radical neck dissection and right modified radical neck dissection… once again, tissue and lymph nodes were removed, along with my left jugular vein. However, cancer was found in blood vessels and bone, and this could not be resected. The results of the surgery were horrible, with cancer in 10 of the 13 lymph nodes that were removed. To make matters worse, I had a post-surgical complication, a Chyle Leak (yes, pronounced like my husband’s name) that left me in the hospital for an extra few days. Thankfully I was out on Christmas Eve, and spent Christmas Day in Vancouver with my little family and my brother.
A terminal diagnosis at a young age is difficult, seemingly unfair, and certainly unnatural. A terminal diagnosis as a mother with young kids is all the more devastating. Although I may try someday, I likely will never be able to do justice in articulating this experience in my writing.
In January 2020 I started immunotherapy, a drug that is still in clinical trial, but is showing incredible promise for cancer treatment. However, some of the uncommon side effects are incredibly serious, making this treatment a little risky. My surgeon had left cancer in two areas of my neck, one on each side. Shortly after starting immunotherapy, as expected, these areas got worse, and four more tumours showed up in my neck and left axilla region… recurrences 9, 10, 11 and 12. Immunotherapy makes cancer worse before it gets better as the drug causes inflammation around tumour cells. In February a CT scan showed tumour growth on the left clavicle, but tumour shrinkage on the right neck, so five rounds of radiation was completed on the left clavicle. A CT scan in May showed improvement in all areas, except for the tumour in the left axillary region… aka, my left armpit. I completed five rounds of radiation to this area in July 2020, and since this time the tumour has shrunk dramatically.
A CT scan in August 2020 showed shrinkage of the two remaining tumours, one on my clavicle, and the other in the axillary region. The other four tumours have disappeared from sight. A scan in November 2020, only a few weeks ago, showed the same, further shrinkage of the remaining two tumours, no new disease, and some healing of the areas once invaded with cancer. These results are remarkable, what I believe to be a miracle coupled with modern science. My doctors are blown away with this response to the treatment.
These results do not mean I am cancer-free, nor do they provide the assurance that I will beat this cancer. But for the first time in years, I have a glimmer of hope for a future. I am so thankful for life, for everyday.
And this is my story, an overview of four years of fighting, of suffering, of enduring, but now of living, and living well. Nine surgeries, 45 rounds of radiation, 2 rounds of chemotherapy, and 12 rounds of immunotherapy… and counting. This journey is not over, but I am at a different place than a year ago, and life is currently pretty awesome.
A LONG while, especially in the cancer-fighting world where things can change so quickly.
My last update was in October 2019. I had just received some good news. Two months later in December 2019 I was given a terminal diagnosis. For the first time I heard the devastating words from my doctor: “You will die from this.” I knew for a long time that my disease was heading in this direction, but this knowledge could not protect me from the reality of my situation.
I was 35. My kids were 9 and 11. Christmas was a week away. Would this be my last Christmas? Would I live to my 36th birthday in March? How will my kids cope without their mommy? These questions and my reality would run through my head daily. And then some not-so-serious questions would infiltrate my mind… who would Elizabeth end up with on When Calls the Heart? Yes, this was an important question, being a fan of the show and most definitely #TeamNathan. If you’re wondering, I did get to (spoiler alert!) see Elizabeth choose Nathan in the final scene of the season.
I started immunotherapy in January under the care of one of the most wonderful doctors I have ever met. Okay, ALL my doctors are the most wonderful doctors. I am so lucky and blessed to have such an amazing team of professionals who look out for me.
Immunotherapy is a non-curative (at this point) treatment that basically boosts the immune system to recognize and kill cancer. But the drug can cause a host of other problems, some life-threatening. Shortly after starting my treatment I ended up in the hospital. Pain, infection, mouth sores, incredible fatigue, a blood clot… life was rough, very rough. But then, I slowly started feeling better, with the help of some lovely drugs. I didn’t experience any of the life-threatening side effects of this amazing treatment. I watched tumours appear on my neck, which is common in the initial stages of immunotherapy. I then watched four of these six tumours completely disappear, both from being visible to me, and from CT scans. I endured a week of radiation in February to supplement the work of immunotherapy, and another one in July to shrink a tumour that managed to go undetected… the little bugger.
Today I received the incredible news that my CT scan yesterday showed that the two remaining tumours have both shrunk! I do have a swollen lymph node on my neck that still needs to be biopsied, but if it is cancerous, it is not trying to kill me… not yet, anyway!
My prognosis has not changed. No one expects me to beat this in the long term. This treatment is expected to shrink tumours, make the cancer temporarily dormant, and extend my life rather than save it, although immunotherapy has already helped some people beat cancer. This is the reality I live in, and I live well despite this prognosis. I also feel great, with only minor side effects from my treatment. I am incredibly scarred, both physically and emotionally, from cancer. I have limitations because of missing nerves, muscles, bones, etc. Anyone who looks at me knows I have been through something big. Thankfully the “were you in an accident?” questions are few and far between. (If you’re ever wondering, this is NEVER an appropriate question to ask a stranger.) I am certainly also not a better person for going through cancer, rather a different person. But with all this comes a thankfulness and gratefulness for life. In January I didn’t think I had much time left, and in some ways I was ready to die and be rid of the physical and emotional pain. But I am so thankful now for this time of living, and living very well. I have prayed for a miracle, and I know hundreds of people have prayed the same for me. And today I feel like I am living a miracle.
COVID was and still is a huge upset to all our lives. But let me tell you, the frustrations, fears, and longing for some semblance of normal is the life of someone fighting cancer, especially someone with a terminal diagnosis. When March hit and we listened to our dear Dr. Bonnie Henry guide us through the initial stages of the pandemic, my doctor commented to me “we all just joined you.” I felt this, and I continue to feel this, everyday. Somehow we have to persevere as a society, and we don’t know how long this will last. Some of the consequences of reducing the transmission of COVID-19 are significant, including extreme financial loss, mental illness, and potentially other health issues. I have not experienced most of these consequences, but I empathize with so many who have. We are all in this together. In the words of our amazing top Provincial Health Officer, let’s be kind, be calm, and be safe.
And yes, these are the John Fluevog Dr. Henry shoes… and my feet! Did I mention I was one of the lucky people who got these coveted shoes? No? Silly me, this should have been my first update! Really, I could not resist sharing these beautiful shoes, as they represent so much more than just style and the incredible artistic talent of a Canadian shoe designer. These shoes signify a unified fight against an invisible enemy, and as one of the ‘vulnerable’, the continued sacrifices of so many people are an incredible gift to me and all of my fellow warriors.
John Fluevog Dr. Henry shoes
Thank you all for so much support and love, especially over the past nine months. We have struggled, but we have the most amazing community. Even during the darkest times, I have felt incredible gratitude for every single person who has supported us and loved us through this difficult journey.
This week I am feeling so thankful… or SEW thankful, since I always like to mix in some sewing with cancer. What a lovely combination…
Last weekend I was in Vancouver for, yep, you guessed it… medical appointments! One of my co-workers was also in the city for the weekend, so we indulged ourselves in Gastown… Fluevog and Nuba restaurant… a much lovelier combination than the one above. If you haven’t been to Nuba, you absolutely must go and try some Lebanese cuisine. I also found these cozy reading socks from my favourite footwear designer with a message that defined my weekend.
So yes, last weekend in Vancouver I had the dreaded PET scan…
Interesting that these scans, PET scan, CT scan, often called a CAT scan, create images of cuddly creatures who love us and bring us joy. But these scans are anything but cuddly, cute and joyful. Rather, they are a little noisy, uncomfortable, and require the injection of toxic drugs.
PET, short for positron emission tomography, is a scan that looks for cancer in the entire body, from the top of the head to the knees. (I really hope this cancer never spreads to my toes, because they will become quite lumpy or fall off before anyone notices they are cancerous!) Prep requires 6 hours of fasting, an injection of radioactive drugs, and lying still for 1 hour (no reading allowed, believe it or not). You then get the lovely privilege of lying flat on a hard surface for 20 minutes while the machine slowly brings you through a tube and reads your body. Following the scan you must drink lots of fluids to eliminate the radioactive drug. Additionally, if you are flying or crossing a border within 24 hours you must carry a letter depicting your sad tale of being radioactive, as the metal detector WILL sound the alarm. Ask me how I know this…
The scan itself is completely bearable with no side effects. (other than filling my body with toxins… again…) The real agony is waiting for the results… which I would receive that afternoon.
Then came the unexpected call from the office requesting that I come in, despite already having an appointment (apparently it was hiding?). I knew what this meant, my surgeon NEEDED to see me, because my scan showed SOMETHING.
Prior to surgeries 5 and 6 I was told I would lose part of all of my left ear. I was shown pictures of the side of the face sans ear. I researched prosthetic ears. I imagined my life without a left ear. I was devastated. My body is full of scars, showing the transfer of body parts from one area to another. I have significant nerve damage on my left face, neck and shoulder. But looking at life without an ear was devastating. I cried and cried, and then cried some more as I came to grips with my future reality. But then I woke up from both surgery 5 and surgery 6 with a left ear, only missing a tiny part of the lobe (and my piercing). The nurse told me later he couldn’t figure out why I asked over and over if I still had an ear. The joys of post-surgery amnesia.
I visited my local ENT specialist last week concerning a lump around my left clavicle and received similar devastating news. If this was cancerous, it was right by the nerve controlling my left arm. I imagined my life without the control of my left arm. As I went about my day I considered all my activities that require two arms, especially those activities that bring me the most joy… yes, I might lose the ability to sew, crochet, or knit. I thought about learning how to paint, or draw, finding a new passion. I looked longingly at my beautiful fabrics, my sewing machine, my new-to-me serger, praying desperately that I would not lose these things that have become a huge part of my life. I realized very quickly how the loss of function was so much worse than the loss of beauty.
So when I received that call my heart started beating faster. My palms got sweaty. I was terrified. I prayed and prayed and tried to keep myself together while I waited in my surgeon’s far-too-familiar waiting room. All these emotions continued until my surgeon walked in and started feeling the area in front of my left ear, not my neck. “Your scan showed a spot in front of your left ear. It also showed this spot on your last scan in May and it hasn’t changed.” He felt some more. “But I don’t feel anything.” He then told me that my scan was otherwise clear. I felt relief rush over me. For precautionary reasons I will have another surgery to remove this area showing on the scan, but the areas of concern in my neck didn’t show, meaning they aren’t cancer. My surgeon is a big teddy bear and cares a great deal for his patients, so this news was almost as good for him as it was for me. I know my case has been difficult to watch for my entire team of doctors, including ENTs, GPs, oncologists and residents. So a little bit of good news is a relief for everyone. The scan has difficulty detecting anything smaller than 1 cm, which means if cancer remains in my body, it is not yet detectable by a scan. I am good for now. I can breathe.
So yes, my fuzzy socks define how I feel, Let’s be thankful… SEW thankful! (cheesy, I know) I am especially thankful that, for the foreseeable future, I have the function of my left arm, which means I can sew!
And here is my beautiful, creative 11-year-old daughter who loves clothes just as much as her mama, but already has a better eye for fashion than me. I love sewing for this girl and, thankfully (there’s that word again!), she loves her (largely) handmade wardrobe. This Knoxville top is my first pattern test for New Horizons Designs, and I can’t praise the pattern enough. Not only is it a quick and easy sew (the knot seems tricky, but the tutorials help), but you are given so many options for sleeves, knots, necklines and lengths. And bonus, the top is also available in adult sizes! This dreamy bamboo stretch fabric is from my local sewing shop, Nelson Stitch Lab. This mama also needs one too!
Girl’s Knoxville Top by New Horizons Designs with fabric from Nelson Stitch Lab
The Fluevog Gastown store had a mini clothesline where customers could hang their reasons for being thankful. This serendipitous moment of hanging my reason for thankfulness was the icing on the cake to an amazing weekend.
It was like any other evening with friends. We had food, we played games, we laughed, it was a good night. The evening was winding down, but the conversation continued. I was my normal self. But my normal self is always aware of the potential for another recurrence. With this awareness, palpating my neck and face has become habit, I don’t even think about it, yet when everything feels as it should, I relax. But as the evening was winding down and my hands naturally graduated to my neck, suddenly I couldn’t relax. No, this evening my finger felt a smooth, slight protrusion, less than 1 cm in diameter. I felt again. Unfortunately this was not my imagination. And the familiar feelings of panic, of despair, of deep frustration rushed over me. I suddenly went quiet. I knew what I felt. I knew this was cancer.
Six days later my doctor confirmed what I already knew: the biopsy had tested positive for squamous cell carcinoma.
I love my otolaryngologist. I’ve never actually attempted to pronounce this word, in justified fear that I will absolutely butcher the pronunciation. Rather, I use the Ear, Nose, Throat acronym: ENT, when describing this doctor. My local ENT diagnosed me and has been with me every step of this cancer journey over the past (gasp!) almost THREE years. He has never rushed me out the door, has always answered all my questions, and is very gentle with bad news. Oddly enough, he now also comments on my shoes. But that’s a story for another day…
So when I heard his voice this time, I knew right away the biopsy was positive. Receptionists and support staff call with good news, doctors call with bad news. “Oh no, it’s you calling…” I said. Slightly offensive… he calls me and I express my disappointment in hearing his voice! Thankfully he knows me well enough by now to know this disappointment is not personal.
So the process begins… again… booking a CT scan, communicating with my surgeon’s office in Vancouver, determining where the surgery will occur, waiting for CT results, praying that nothing else shows on this scan. And thankfully this is it, a 1.3 cm tumour on my neck, right on the jugular vein.
My surgery was booked for September 17th in Trail! Notice the exclamation mark? This is my seventh surgery. My first six were in Vancouver. Trail hospital is a 45 minute drive to my house. This means that I don’t have to travel for surgery. I can recover at home instead of at a (very generous) friend’s apartment in Vancouver. I can see my kids right after my surgery. And this kind, lovely otolaryngologist will finally operate on me. See what I did there? I used the proper name for his specialty… still don’t know how to pronounce it.
My seventh surgery was my easiest yet. I walked into the OR at 8:00 am, and I walked out of the hospital at 4:00 pm that day. I was told the morning of my surgery that, given the location of the tumour, the jugular vein would likely require removal. However, my surgeon was able to remove the tumour with very little impact to the tissue surrounding the area, all while saving the vein. Amazingly enough, we can live with only one jugular vein!
A few days after surgery I received the good news that margins were negative, meaning they believe no cancer is remaining in the area where the tumour was removed. This certainly does not indicate cancer-free. But I can breathe, I can relax.
So what do I do when I’m not seeing doctors, having cancer removed, or recovering from yet another round of anesthetic? This summer I spent a lot of time in my garden, and am still enjoying so many fresh vegetables! I’ve made 29 pints of salsa and counting. But when the weather cools, the leaves fall, and the fire is lit, I love to sit in front of my sewing machine and create. This is therapy, this is relaxation, this is what I need.
New Horizons Bellevue with Bamboo Lycra from Blended Thread Fabrics
I fell in love with this Titanium Border Bamboo Lycra fabric from Blended Thread Fabrics the moment I first saw it online. It is soft, it is dreamy and I absolutely love the pairing of this fabric with the New Horizons Bellevue, a PDF pattern with dolman style, off-the-shoulder sleeves. I have made this pattern, wait for it… eight times already! My only complaint about this pattern is the neckband is too wide for the opening. However, once I figured this out (I cut 2 inches off the total neckband length), I just cut accordingly and whip this baby up in less than an hour. Okay, why not post the first one I made, also in a must-have Bamboo Lycra from Blended Thread Fabrics… Archie!
New Horizons Bellevue in Blended Thread Fabrics Bamboo Lycra paired with Fluevog Prepares Pledges
I’m in love with both these tops and, of course, paired them both with Fluevogs. Oh, did I mention that John Fluevog, my favourite designer, visited me in the hospital after surgery 5? I have some of the most amazing friends who arranged the whole thing. He was kind and lovely, and I felt truly blessed to have this visit. Sewing and Fluevogs… a match made in fashion heaven!
Someday I will write more about my other six surgeries. Some have been major, with bone grafts, skin grafts, blood vessel grafts (a.k.a. free flaps), tracheotomies, lengthy hospital stays, infections, etc. But a couple have been easy day surgeries, and for these, I am so thankful. I hate living with the constant threat and reality of recurrences, but when I have good surgery results, I am not waiting for biopsy results, I don’t have any new lumps scaring me, I relax, enjoy the everyday, and use my sewing machine as therapy.
I’m not a techie by any stretch of the imagination, nor am I a writer. However, with the power of WYSIWYG technology and the forgiving eyes and ears of my readers, I can become a blogger, talented or not.
Why, oh why, would I start a blog?
I have a story to tell, and a life to share. I am a normal person with an extraordinary story… a story I wish I had no part, but alas, I must live this story.
On the surface, these pictures show a woman (me!) modelling a dress and shoes. Below the surface, however, these pictures go much deeper. The woman is wearing a dress she made from a pattern (Sofilantjes Litore) she customized to suit her style. Upon looking closer you will notice the woman is not looking straight at the camera. In fact, she only shows the right size of her face while hiding behind hair thickened with hair extensions.
This is me. This is my reality. On January 4, 2017 I received a devastating call from my doctor. “The biopsy results came in and… it’s cancerous.” In one moment my life turned upside down. This 32-year-old mother of a 6-year-old boy and 8-year-old girl had cancer: oral squamous cell carcinoma. I was thrown into a world in which I had no experience. We hear that everyone is touched by cancer. Aside from losing my grandfather at the age of 7 to lung cancer, I hadn’t ever felt the devastating emotions of cancer… until that day, and then it didn’t hit close to home, it was right at home.
A major surgery… 35 rounds of radiation… 2 rounds of chemo… six months of hell and then, suddenly, it was over. I felt good. I looked good, healthy, vibrant, full of life. I hit the one year cancer-free mark. I was at the top of the world. I felt good, our family of four had just come back from an amazing European adventure, my career was advancing, and I was happy. But then on July 19, 2018 I received the most devastating news of my life, worse than my original diagnosis. “We found squamous cell carcinoma in your jaw.” I hadn’t beat cancer. It had returned with a vengeance. Another surgery, this time leaving my face scarred and a little misshapen. A few months later I had another recurrence, another surgery… and another… and another… and another… the left side of my face is very scarred. My facial nerve was damaged during surgery 4, and removed during surgery 5, resulting in a loss of control in the left side of my face. I cannot smile. My left eye cannot fully blink. My left nostril runs freely in the cold. The fibula in my left leg is now in my jaw, leaving a scar in its place. I have a huge scar on my left thigh, and another on my right wrist. I have a square scar on my right thigh. My neck has been opened 5 times. I have experienced the anguish of 2 tracheotomies. This is me. This is my reality.
In the midst of all the devastation, however, I have found so much joy. I love spending time with my precious kids, who are now almost 9 and 11. I have the courage to say no to the trivial, but yes to the important things. I spend much less time keeping my house clean and a lot more time doing the things I love…
One of my loves is creating with various textiles. I crochet, I sew, and I finally learned to knit last fall. I have always loved clothing. My head is full of new design ideas. Having cancer has inspired me to release this creative energy through various textile mediums and spend my time doing what I love.
These pictures hide the physical scars of a difficult story, but, at the same time, display the inspiration that comes from a life-changing journey. This blog will tell both, the continued journey of navigating cancer and the art that results from facing your own mortality. I have faced a wide range of emotions over the past 2.5 years, but joy through this cancer journey has taught me one thing: this life is truly worth living.
Tailored for Life 