…because I’ve never really told the whole story…
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.
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.
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…
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.
5 thoughts on “My story – an overview of four years”
We have the same diagnosis. Mine is aggressive as well. First surgery June 2020, second October 2020. Gearing up for rads & chemo. Thank you for sharing your story. It’s nice to not feel so alone. xoxox
What a horrible diagnosis we have both had! Wishing you all the best as you fight this nasty cancer… aggressive is a good description of this one. And yes, shared experience is incredibly valuable in fighting cancer. I often feel alone as well.
I was first diagnosed in May of this year: Left Buccal SCC, early stage. After surgery in June both my surgeon and the tumor board were on the fence about radiation, with my surgeon stating he felt the side effects would not outweigh the benefits.. I went to a rad oncologist who agreed. So I did not do the radiation. At my 3 month PET it was back. I sure wish I had ignored them and done it. But I suppose we can’t think that way. You just soldier on. xoxo
Wow Wendy, when I see you all I think is there is an incredibly brave, strong, fighting positive woman. I am so blessed to know you. Thanks for sharing your story. You never know who you are helping by sharing.
I so adore you my beautiful friend. I still see you smile, although in a different way. I am thankful life is good for you right now and I pray that will continue for a longer time than anyone thinks possible. Your continued sharing in such an intelligent and vulnerable way is a blessing