As told to Nicole Audrey Spector
It’s probably just a sinus infection.
That’s what my doctor thought when I came in a year ago with an earache, swollen lymph nodes, difficulty swallowing and congestion. I was examined and sent home with antibiotics.
The swelling of my lymph nodes went down, but all my other symptoms got worse. Soon it became difficult to swallow food. I relied on smoothies for sustenance and, with no intention of losing weight, went from 160 pounds to 120 pounds in just six weeks.
When my doctor saw my drastic decline, she ordered a CT scan of my head and neck, and said that something didn’t look right. She noticed a lump in my upper throat and scheduled a biopsy.
Just a few nights after seeing the doctor, I woke up unable to breathe, called 911 and was rushed to the hospital in an ambulance. I had an emergency tracheostomy so I could breathe through a tube in my throat and a gastrostomy tube inserted in my stomach so I could get nutrients.
After various tests, it was determined that I had squamous cell carcinoma of the hypopharynx, a type of throat cancer. I learned of my diagnosis in the worst way possible — through a hospital text alert on my phone linking to a report that did not make much sense to me. I forwarded it to my primary care doctor, saying, “I don’t think I have cancer?”
But I did, she confirmed. And it was aggressive.
I was in total disbelief. Just completely stunned — as were my doctors, who explained to me that I’m a highly unlikely candidate for this type of cancer. I’m a Black woman, just 40 years old at the time of diagnosis, a nonsmoker and nondrinker with no history of the human papillomavirus (HPV).
The diagnosis was devastating, yet there was just the smallest sliver of relief to finally know what was going on. My symptoms had already bulldozed my life, causing me to pause my quest to get my teaching certification. That meant losing my teaching job (a job I adored) and having to go on disability. My once independent and prosperous life was thrown into peril. I risked losing my home and my car.
2022 (Photo/Ian Giles Photography)
Thankfully my friends, family, sorority sisters and church community stepped up to cover all my expenses. This has been so helpful, and I’m brought to tears just thinking about it. Without them, I don’t know where I would be. Their support has made it possible for me to navigate this challenging time without having to worry about money.
Once I found out I had cancer, my doctors laid out my options for me. I could try chemoradiation therapy or I could get a laryngectomy — a surgery to remove my larynx.
I didn’t hesitate to opt for the chemoradiation therapy, which I started immediately. This was an immensely painful process. I still have burns on my neck from the radiation.
There were times during the treatment that I sank into depression. I recall one morning watching throngs of kids run by as school was being let out. I was so angry. “I want my life back!” I thought, curling into a ball of tears.
I then realized that I had a choice: I could either own my illness and fight it tooth and nail with dignity and grace, or I could give in to self-pity and resentment.
The second path would have been easy. I chose the former.
But it wasn’t as simple as just snapping my fingers and becoming brave. To build up my spirit, I needed to deepen my relationship with God.
I began, as I like to think of it, spending time with God. I do this by journaling, meditating and praying each morning. It’s an intensive practice that I engage in every single day — often for up to two hours. During these sessions, my soul is open and totally free to receive positivity and strength.
In addition to deepening my relationship with God, I started paying more attention to the needs of my body. I was getting minimal nutrients through my feeding tube but not much beyond that. I started making my own juices using all sorts of vegetables, fruits and spices. Since integrating homemade juice into my regimen, I feel so much more alive and capable.
Unfortunately, the chemoradiation therapy didn’t get rid of the cancer, and my only viable option was immunotherapy or the laryngectomy. Because I believe surgery should always be the last resort, I opted for immunotherapy. But it didn’t sit well with my body. And so, here I am, looking at the last resort: surgery.
I will undergo the laryngectomy very soon. It’s a major operation and after, you must relearn how to swallow. You no longer have a voice box, so you must learn to speak via a voice prosthesis. I’ll breathe out of my neck and be unable to smell.
I will have to learn how to live in a new body. But I’m looking forward to the surgery because I know that after, I’ll be able to eat and taste again. Can you imagine that? Biting into a wedge of pineapple? Feeling the sweetness drip down your chin?
Most importantly, I’ll be cancer-free — and there is no greater gift than that.
Still, I’m not totally without fear. I am, after all, stepping into the unknown with the certainty that I’ll re-emerge a different version of myself. I know I’ll miss smelling, so I’m stocking up on scented candles and aromatherapy now so that I can savor that sense a final time.
I know I’ll miss my voice, so I have begun recording myself reading letters aloud to my loved ones — even the people I have never met, like my future husband.
I want them all to know that my voice is still strong and resonant: It just sounds different than the one I was born with. I want them — and everyone else — to know that cancer has no color. It can happen to anyone. And that’s OK. Faith and science get us through it.
As I prepare for the sleep of surgery, knowing I will wake up in a very different body, I’m at total peace. There is nothing to be afraid of.
This resource was created with support from Merck.
Leonora Sneed passed away on July 15, 2022. She showed tremendous courage in sharing her story and was an inspiration to all of us at HealthyWomen and to our readers. She will be greatly missed.
Updated July 26, 2022
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