My story? Like so many others, it involves cancer. It begins thirty years ago, which means I’ve lived longer with cancer than without. It’s not been an easy journey. I’ve had wonderful support and love from my family, but that is their story. And this? This story is mine alone.
It was a new year and I’d just begun a new job. But the best thing in my life right then was my beautiful, bald-head baby boy. And then I noticed it. It was just a tiny sore spot on my tongue. You know, that sore you get when you can’t wait for the pizza to cool before you take a bite? Nothing to worry about, right?!? That was March.
Fast forward a couple of months. My baby’s a chunky monkey, growing like a weed. Unfortunately, that sore was still there and it’s growing, too. I have the doctor look at it. He says it’s nothing to worry about, an antibiotic for two weeks should take care of it. That was May.
My baby boy is now a happy, healthy, adorable nine-month-old, and the job is going well. But that sore is still there, and now I can feel a knot under my chin. Back to the doctor, and while he still doesn’t think it’s anything, he suggests a biopsy, just to be sure. It was the middle of July.
It’s the day of my biopsy and before I know it, it’s done and I’m back in my room. My room becomes the lounge for my family while we wait for results. And then the doctor comes in and utters the ugliest words in the English language—It’s cancer. There are no words to describe the fear, despair, confusion. What happens now? What about my baby? Who will take care of him? Will I even live? The next day is a blur of tests. At one point I’m downstairs after a test, waiting for transport to take me back to my room. I wait. And wait. And finally lose it, sobbing with tears and snot, breathless and red-faced. That finally got someone’s attention, and I was back in my room shortly. That was Thursday, July 28.
And now it’s THE day. I kissed everyone and taped a pic of my son on my IV pump. And that’s all I remember for a while. I come to in recovery long enough to discover I don’t have the tracheostomy that I was worried about. Soon I’m moved to ICU. That was Friday night.
I wake up Saturday and it’s bright and sunny. A dramatic contrast to the fear and pain circulating through my mind and body. Over half my tongue is gone. The cancer has spread, putting me at Stage 4. There are only 4 stages I find out later. My incision runs through the middle of my bottom lip, down and under my chin, down the middle of my neck, around to the right, and back behind my right ear. There’s IV’s in both arms—I’ll also have one in my foot before I’m discharged—and a tube in my nose for nutrition, which will stay till November, when it will be put directly into my stomach for another year. I develop an infection under my chain, the staples come out, and a drain goes in. There’s a drain in my chest as well. I’ll spend 18 days in the hospital this time. I’ll be in and out of the hospital for the next year or so. I go home August 13, 1988. Time becomes fuzzy to me in this part of my story. I think it’s because by far the hardest part, both physically and mentally.
The beginning of September brought two things: my 23rd birthday and the start of radiation therapy, aka hell. Because radiation would be directed at my head, it was important that my head not move during therapy. A mask made from hard plastic mesh was molded over my face to be bolted down to the table during each session. To someone with claustrophobia, this was torture. I endured thirty treatments. It took me eight weeks to finish. It was during this time I started to think that maybe I wouldn’t survive this. I had open blisters on top of both shoulders, as well as the roof of my mouth. I can’t eat or drink for the next year, my nutrition coming through my feeding tube. In November I had my tube moved from my nose and inserted in my abdomen directly into my stomach. This stopped the constant nausea and vomiting, as well as enabling me to take care of and play with my baby without him grabbing the tube and displacing it. Back to the treatments…in addition to the open sores, I’m fatigued beyond belief. I lose so much weight I’m about fifty pounds underweight. I can barely take care of myself, much less my son. My mom tends to me, my teenage sister, my son. One night in absolute despair, I wonder if I can endure much more. But what happens to my son? So, I concentrate on him. And I dream of holding my baby’s baby. Because of infinite prayers, wishes, dreams, crossed fingers…I make it! Treatments are done, no more hospital stays, I’ve started to eat and gain weight, the feeding tube came out, my energy came back…and life went on. I’d beaten cancer, it was overall over! Or so I thought…
Skip a few years, my ‘baby’ is now eight, and I have a fantastic five-year-old son. I also have some terrible pain in my jaw, and my teeth are breaking and falling out. It seems that radiation continues to destroy for years. I have osteoradionecrosis—a long word that means I have dead bone in my jaws. This requires surgery to remove teeth and the dead bone, followed by six weeks of hyperbaric oxygen treatments. But radiation wasn’t done yet…
Another baby rounds up the family, a beautiful little girl this time. Life continues with all its ups and downs. It’s now been twenty years and my dream comes true…I get to hold my baby’s baby, a precious girl. I love being Gramma! Fast forward five more years and there’s another precious granddaughter. Life is good! And then I wind up in the hospital with pneumonia. My tongue no longer functions enough to prevent aspiration when I eat. So overnight, I can no longer eat, and the feeding tube that came out twenty-three years ago, goes back in. This time it’s permanent. That was five years ago.
Life is still good, just a bit different. Days now include feedings, meds, maintaining my tube, doctor’s appointments. But I am DETERMINED to not let cancer rule my life. So, days also include sleepovers with my granddaughters, wedding planning with my daughter, meaningful conversations with my now adult children, laughter with my family, and thanking God for miracles..