Would I call it a cancer journey? No, I think not. It is a journey through my life that happened to include cancer.
Like many young people, I thought I was invincible. I had a great career, and everything was going my way. However, when I was 40, I was told I had “cancer” for the first time. My doctors discovered pre-cancer in my breast. From that moment onward, it was a merry-go-round of lumpectomies, tests, and surgery. This ordeal went for five years until I said, “no more” and walked away for a year.
That year turned into two and almost three when I found that dreaded lump. There are things worse than death, and chemotherapy is one of them. Even then, I knew I had a choice: I could give up, be a victim, and feel miserable for the rest of my life, or I could face it head-on and live my life my way.
Then, one day about twenty years later, I was talking to a friend when I leaned my jaw on my hand and felt a solid lump. “That’s not good,” I told her.
I started calling the lump “the alien” because, as far as I was concerned, it invaded me. I did not own it. It was never “mine.”
This time, I didn’t wait. I immediately saw my physician. She sent me to an ENT who said it was probably just a blocked parotid gland. She prescribed sour drops and told me to see if the blockage would find its own way out. It did not. A scan and a biopsy followed. They were all inconclusive, but the odds of malignant parotid cancer seemed minimal. I guess I should have been reassured, but once you’ve been diagnosed with cancer, the fear is always there. I started calling the lump “the alien” because, as far as I was concerned, it invaded me. I did not own it. It was never “mine.”
I went to a specialist in the city. Was it benign or malignant? In many ways, it did not matter. It had to come out. The initial report done during my surgery was hopeful. However, that report was wrong. One month and several specialists later, my surgeon confirmed it was a rare leiomyosarcoma of the parotid. I am thankful my surgeon followed up with other top-rate cancer centers.
About halfway through my own treatments, my husband, Joe, found out he had pancreatic cancer. So began a two-year journey…
My surgeon recommended proton beam radiation, but my insurance refused to pay for any of the centers that provided it, so I had to settle for what I could get. That first round of proton beam therapy missed some cancer still hiding in the jaw. It came back with a vengeance a year later. That tumor grew exponentially.
My second surgery was more extreme. I lost part of a nerve, some bone, and most of my jaw muscle. Despite all this, I was determined to return to my healthy, active life. This time, I could also get the proper radiation. However, my husband and I had to get lodging out of state, as the nearest center was a few hours away, and it was just not safe for me to drive.
About halfway through my own treatments, my husband, Joe, found out he had pancreatic cancer. So began a two-year journey, taking care of him and undergoing my own treatment. He died about a year ago.
While my face still burned from the radiation treatment, I took Joe for his first chemo treatment. He chose to prolong his life, no matter the cost. For the next two years, we juggled treatments. I started healing inside and out, growing stronger so that I could care for him in his final days.
You can be the victim of your life, or you can live your life and enjoy it.
I’ve moved far beyond that cancer diagnosis now. The only tough part is all the follow-up testing that I need to do, but I’m so involved with other stuff now. I remember it, but not with the same emotional angst that I had while going through it.
I also kept myself well informed throughout this process. Between consulting my doctors and legitimate websites, I became aware of what could happen to me. I knew my chances of surviving, and I knew I would get cataracts from the radiation, and that I would have issues with my jaw and face.
Earlier, I mentioned that one has a choice to make. You can be the victim of your life, or you can live your life and enjoy it. It takes work. Daily therapy exercises for the radiated neck muscles, daily treatments for my teeth, and constant jaw exercise to keep it open. Nevertheless, that alien is gone. I have my life back. And yes, it is a good one.
Will You Share Your Journey?
April is Oral Cancer Awareness Month. As part of that theme, we post stories written by oral cancer survivors, caregivers and medical professionals for our 30 Stories in 30 Days™ campaign. The insights they share can help others along their journey.
