Welcome to our Caring Bridge’s website, which is a keen way of communicating in one place the story of my mother's battle with an unexpected tumor that has made a second appearance in our lives.
I am Barbara's daughter, Debbie, and will begin Mom's story today but when Mom feels up to it, she will share updates herself, and possibly other family members as well who can help co-author her progress.
Mom’s story began last May 2020, when she noticed a wee sore bump on the left side of her jaw but chalked up the discomfort to usual TMJ issues she’s dealt with for years. An MRI later revealed the little bump was in fact, a high-grade, mucoepidermoid carcinoma of the parotid gland; a/k/a: a very bad, very rare, cancerous tumor in a salivary gland.
The painful bump quickly grew to the size of a goose-egg, succeeding in wrapping itself around several major nerves in her face and grew into her masseter muscle. Mom’s ability to even open her mouth and comfortably eat was greatly affected in just a matter of a couple weeks.
Fortunately, a terrific team of doctors assembled at Overlake Hospital in Bellevue determined the best course of treatment for Mom and all concluded, surgery to remove the tumor ASAP was Step One. So by early July, the tumor was removed by Dr. Zundel, a wonderful & caring doctor that Mom and I adore. Needless to say, the surgery and recovery were tough going, but Mom patiently & persistently dealt with each issue that arose and over the next couple weeks, healed well enough to begin Step Two: 30 rounds of intense radiation that lasted from Aug to mid-Sept.
At the time, her oncologist, Dr. Reece, and surgeon, Dr. Zundel both apologized for the amount of radiation they’d scheduled, claiming “it may seem like overkill” since they both felt confident all the margins had been removed. Nonetheless, both wanted to be sure they “got it all”, which is why they decided so much direct radiation to her face & neck would help rid any resdidual cancer cells possibly left behind.
I won’t sugarcoat it. The radiation was brutal, but Mom came through it like a rock star! She did everything perfectly and received glowing reviews and admiration from her entire healthcare team. The clinic was amazed she never missed a single radiation appt and she took optimal care of her skin so the obvious side effects seemed relatively nominal. Also, she didn’t lose any weight, which was remarkable since most who receive radiation to the head end up with a feeding tube since radiation drastically alters the taste of food making it difficult to maintain a healthy weight. So all in all….Mom came through the whole wretched ordeal with flying colors and accolades from everyone involved.
Once Mom was in full-on recovery mode, the primary issue that seemed most bothersome post-surgery was the damage caused from the loss of one of her major facial nerves that controls the left eyelid’s ability to close. When an eyelid cannot close, the eyeball is not regularly nourished & moisturized by the simple act of blinking and as a result, the eyesight quickly deteriorates. So this made it difficult for Mom to comfortably read, text, watch movies, respond to emails, etc. Many regular day-to-day activities had a new, frustrating, uncomfortable twist for Mom. And yet, she persevered and continued to do the work necessary to adapt and improve her new normal in an old world.
Thankfully, the nightmare known as “2020” finally ended. Our country got new leadership, a COVID vaccine was on the way, and Mom began making plans for her future in retirement. After we both got vaccinated, we made reservations to fly back to Michigan in July 2021 to visit our awesome, Midwest family from MI & IN…but unfortunately, cancer had other plans for us this spring.
A couple weeks ago, a “funny spot” appeared in the exact same place on Mom's jaw, and a biopsy revealed the same damn cancer was back in the same damn place. How in the hell this cancer was able to survive radical surgery & 30 rounds of direct radiation just goes to show how incredibly tenacious it is. According to an oncologist at UW, only 3-5% of the world ever gets this type of rare cancer so treatment options are not widely known.
After conferring with her Overlake Hospital team of caregivers, as well as new oncology specialist (Dr. Christina Rodriguez) at UW and Swedish Hospital surgeon (Dr. Namou Kim) in Seattle, it appears Mom’s next best option is to undergo another surgery to remove tumor #2, which may involve grafting part of her fibula bone (to replace her left jaw if it needs to be removed), as well as tissue. But after 30 rounds of radiation (after tumor #1), the tissue in her face is still recovering, so she is not eligible to do any more radiation post-surgery #2. So if the cancer comes back again, her next healing process will likely involve some form of chemo.
Pursuant to Dr. Rodriguez at UW, “There are no known causes for why Barbara got this rare cancer. Neither gender, age, race, overall health, or occupation are known to play a role in getting it either. It's simply 'bad luck', " Dr. Rodriguez explained. And so it goes.
My next Caring Bridge post will be shared after Mom's surgery #2, which is scheduled for Wednesday, April 28. Thank you so much for your continued love & support.