Paige’s Squamous Cell Carcinoma Story

Paige had no idea that losing her ability to speak would give her words so much more power.

On the day she was diagnosed, Paige heard only some of what she was told. “I recall a few basic things the doctor said to me that day: ‘You have tongue cancer, half of your tongue will be removed, part of your arm will be harvested to make a new tongue, they will take a skin graft from your leg, you will have a neck dissection, tracheotomy, and a feeding tube.’ I am quite certain she said many other words of comfort and did not rattle those things off, but that is all I recall hearing, and I was devastated.”

The spot on her tongue that had been bothering her had already been dismissed as nothing by doctors, but once it started affecting her speech she sought another opinion. Speech had become painful, and despite being an otherwise-healthy, 35-year-old, single mother of three, Paige knew something was wrong. On March 28, 2012, Paige Lewis was diagnosed with Squamous Cell Carcinoma of the tongue.

How would she tell her children? Her family? Her friends? Not figuratively—not what words would she choose—how, literally, would she communicate without the voice she had always taken for granted?

Facing months of silence due to invasive treatments, Paige turned to writing. She explained, “I have always been able to express myself best in written words, so I just started to write about all that was going on.  I realized I had to tell my friends and family about this diagnosis and I simply could not tell everyone one by one.”

A friend of hers who had also been diagnosed with cancer had used a blog to keep everyone informed, so when she found MyLifeLine.org, Paige signed up for her own free site. She wrote about the medical treatments, the surgeries, and the medications. She wrote about the pain—both emotional and physical.

She reflected, “My site was the only way to express myself and work through all of my emotions. I think that is why it is filled with such raw emotion and why people were drawn to it.”

Throughout her journey, Paige had loving caregivers assisting her and her MyLifeLine.org site was helpful to them as well. One of Paige’s caregivers said, “Not only did her blog help me stay abreast of what was going on with her cancer, Paige included what was going on in her mind. I was able to mourn the sad news away from her to then be strong in her presence.”

“MyLifeLine.org was a lifeline for me during my journey; it was my connection to the world, my connection to my own self, and a place where I could be encouraged by others. I am still using the site and will always want it and continue to share my story. Every time someone asks me about my scars I tell them a brief version of events and I hand them the web address for my site on MyLifeLine.org,” Paige said.



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