Stories of Hope are meant to inspire and empower patients, loved ones and caregivers. Below we spotlight individuals who experienced the pain, sadness and vulnerability of having a cancer diagnosis.
Stories of Hope are meant to inspire and empower patients, loved ones and caregivers. Below we spotlight individuals who experienced the pain, sadness and vulnerability of having a cancer diagnosis.
Meet Matthew Gagnon
(USA, Ohio)
Matthew is a Middle School Assistant Principal and ACC Thriver. For 4 years, he had a lump that was dismissed by doctors, ENT’s, dentists and others. He knew something was wrong and through the ACCOI community and resources, he was able to find a medical team who listened and acted!
Matthew was diagnosed with stage IV metastatic ACC in his submandibular gland and it spread to 5 lymph nodes with perineural invasion. His treatment consisted of 2 surgeries, a neck dissection and 33 treatments of proton therapy. He is currently 5 years NED and living a quality life again!
Matthew wrote himself a letter during treatment and chose to share a few snippets, to inspire and motivate others going through active treatment now:
“The wounds may be visible (for now) but you cannot take my spirit. You tried very hard. I applaud you, but you have failed. In fact, you have done completely the opposite of what you set out to do. You had plans to weaken, harden and kill my spirit and will to live. You tried to do the same to those I love around me. You definitely had us worried and scared for a bit. I will give you that. In the end, that worked against you.”
“I became stronger than ever! We all did! You showed me just how strong I really am. You showed me and others the power of love, hope and community. You showed me angels on this Earth walking among us, some of whom were complete strangers to me until now. You allowed me to look God in the eyes and you gave Him an opportunity to open his arms to fully display all the true love and grace around me that I did not see until now. You brought upon me the greatest blessing in my entire life. You showed me true love and gratitude! For that, I thank you.”
Meet Amy Wilson
(USA, Oklahoma)
I’m Amy. There’s a lot of things I suppose is customary to talk about one’s self; age (49), place (Oklahoma), marital status (married to Ross). There’s a lot more about me that I’d like people to know, however. I still pick up cool rocks, my socks never match, I just learned to make rope from dandelion stems, I can’t tell a joke, I am a mom to two good humans, I make friends with strays (cats, dogs, ducks) more often than my husband would like, and I am surviving adenoid cystic carcinoma.
I have been healthy all my life. In 2018, I saw my doctor for an odd, occasional pain in my right ear that felt like something stabbing me. There was nothing. A few months later, I went back again, with the ear ache, but now my cheek would sting too. Fast forward to January of 2021, I was in constant pain, crying every night, struggling to eat. I had seen more than a dozen physicians and dentists of varying specialties, including oral surgeons and even had Botox injected into my face several times seeking pain relief. I finally had a biopsy and on April 28th, I got that terrible phone call that I had Adenoid Cystic Carcinoma. No one in my family had ever had cancer. We were shocked, devastated, terrified.
A month later I was having surgery to remove my upper jaw, hard and soft palate, and a few weeks later went back in to remove nasal turbinate to get better margins. I had proton radiation and chemotherapy seven weeks later. I lost 60 pounds in a couple of months. I barely remember those months afterward, they were brutal and I could not have survived without the never ceasing love of my husband and my daughters. I have fought with obturators and infections and ear tubes and hearing aids. We travel to MD Anderson for trismus therapy to help my jaw open again (it’s working!) and the incredible team at the oral oncology department made my obturator that I barely notice is in my mouth now. My husband drives us there every few months like a road warrior so that we can get back home as soon as possible. We make it fun. We make memories.
My scans are still NED, but my anxieties think that every little pain or ailment is that awful companion cancer lurking somewhere in my body.
Over the course of this journey, I made some friends in the ACC groups online. A little girl gang of us reluctant acc participants that encourage, care, support, love, complain, celebrate, and grieve together. I am forever grateful for them, as I learned so much about this disease from others.
I wish I could say I’ve learned something profound about life by surviving cancer. I haven’t. Maybe I love a bit more, and I go out of my way to make things for my loved ones (I’m a potter). My feelings have been hurt by friends who have disappeared from my life, but often replaced by near strangers who have shown me and my family an overwhelming act of kindness. I strive to do the same for others.
This disease is part of my life, but it’s not the definition of my life. I’m clumsily navigating the physical and emotional sea of cancer, but I’ve got people sailing with me.
Meet Alan Walker
(Australia)
My name is Alan Walker. I am a 67 year old retired physicist and a marathon cyclist for fun. I live in a town of 100,000 people in a cold part of Australia. Back in late September of 2016, I scratched an itch under my chin. It hurt enough to make me jump and further cautious prodding revealed a lump. A few weeks later, the lump was diagnosed as ACC in my submandibular salivary gland. Surgery was scheduled for late December 2016.
The day before I was admitted, I looked at the MRI scans on my home computer. Big mistake: the report specifically noted two hot spots in the middle of my chest between my lungs, which terrified me. On the day of the surgery, the surgeon said that the hot spots were probably sarcoidosis, and could be dealt with after I recovered from the surgery. About a month later, I was sent to a big city hospital for more investigation. After further scans and a biopsy under general anesthetic, I got the diagnosis. The lung specialist told me it was a very rare inflammation of lymph nodes that happens when there is cancer elsewhere, that no-one knows why it happens and that it usually disappears in a year or two. So I had a rare cancer and a rare non-cancer.
The first half of 2017 was dominated by recovery from the surgery, then radiation therapy, then recovery from the radiation therapy. My treatment and care was very thorough. Starting about two weeks before radiotherapy, and continuing for about two weeks after, I had fortnightly consultations with an oncologist, and weekly consultations with an oncology nurse, a speech therapist, and a dietician. The speech therapist helped me overcome a severe cough caused by irritation in my throat and the dietician helped me keep my weight stable when everything tasted of salt or metal.
Let’s wind back the calendar. In the July prior to cancer, I had completed a ride of 780 km / 485 miles in two days. After the radiation therapy, my rehabilitation goal was to ride 200 km / 125 miles in one day. The exercise physiologist in charge of my rehabilitation was delighted by my ambition and supportive. I hit my goal in November, seven months after my last dose of radiotherapy. I’m still riding, sometimes 200 to 300 km in a day.
The itch was a lucky coincidence. The cancer could have grown a lot worse if I hadn’t found it and if my doctor had not been so careful. I don’t feel sad or bitter about ACC. I have already lived a longer and more comfortable life than most human beings who have ever lived.
Meet Alder Allensworth
(USA, Florida)
In April of 1990, I was just completing my Master’s degree in Music Therapy, getting ready to defend my thesis. I worked full time as a Music Therapist with emotionally disturbed teenagers in West Palm Beach Florida and commuted to Miami for graduate school.
I got sick and went to the doctor, it was the flu. But a very sharp nurse asked me why my left eyelid was drooping. I explained I was exhausted between school and work. She shook her head ‘no’ and looked closer and saw a lump, like the end of a pencil eraser protruding out from under my eyelid. She asked me how long that had been there. I said I had noticed it putting in mascara, but it really didn’t register to me as something different. There was no pain, but as I looked back, I kept blowing contact lens out of that eye. The eyeball had started to protrude. The nurse sent me to an ophthalmologist who treated me for infection of the eyelid. No change with antibiotics so he sent me to have a MRI. The MRI showed a tumor encapsulating the lacrimal gland.
Then it was off to a surgeon who removed the tumor in May of 1990. The surgeon said that it was probably benign, said he may have to take the eyelids. This really frightened me. I was 32 years old and my grandfather had lost an eyelid to skin cancer. All I could see was the disfigurement. I did under go the surgery and the tumor was removed. He did not remove the eyelids. I went on with life, defended my thesis and received my degree.
It was the beginning of July when I received a call from the plastic surgeon to come in for the results. The surgeon told me that it was ACC Lacrimal Gland. He said I had to go see a doctor in Ft. Lauderdale and he had made an appointment for me that afternoon. Needless to say I was in shock. My parents and I went to see a Doctor in Miami. He did not pull any punches! He said I was case 80 documented in the world and the eye and the whole orbit had to be removed. I had been fretting over eyelids, now I may have to lose it all.
On July 11, 1990, after a successful 9-hour surgery, I had lost my eye, the orbit, muscles, bones, and the optic nerve back through the brain. The surgeon was able to get clean margins. There was no other sign of cancer. I had regular CT scans, as I can no longer have MRI due to the metal twist-ties holding my skull together, for 5 years. Every scan came out clear. I was given a clean bill of health in 1995, and threw one heck of a party!
It is now 2023, and I am almost 33 years out, with no recurrence and no metastasis. I credit my surgeon for having the courage to get the cancer out and my lifestyle changes to stack the deck in my favor. I believe that we are responsible to do our best to stay healthy.
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Find Your Community
It’s important to remember that you don’t have to deal with this diagnosis on your own. Many patients are living very full lives with this rare cancer. Talking with people close to you or joining peer support groups or patient events can be a great comfort during your journey, and your treatment outcome is more likely to be positive as well.
