Nick’s House Stories: Meet Kathy Barnett

From my 66th birthday in December of 2019, I began to look forward to retirement and all I wanted to do. I started having some sinus issues in March, just stuffiness or slight drainage on one side. Then in early April, a frequent bloody nose. My primary care physician saw me via tele-med (due to the COVID-19) and prescribed antibiotics. No improvement. She then said try Afrin over the counter, no improvement. Tried Zyrtec, no improvement. She did say she would refer to an Ear, Nose, and Throat specialist. I heard nothing for a couple weeks so I made the call myself. The practice had just started seeing patients again in office, so I was lucky to get an appointment quickly for May 12th. My last day of work was May 14th.

The ENT doctor performed an endoscopy, found a tumor and ordered a CT scan. Just a week later on May 21st, I had the first surgery. My father, mother and an older sister had colon cancer so that had always been my fear. A sister and a brother had both been diagnosed with skin melanoma.

Over the next few days, I researched Head & Neck, Sino-Nasal Cancers. It’s funny when you start wishing for this or that kind of cancer. Of all the ones I had seen information on, I didn’t bother to even read the one about Mucosal Melanoma. What are the odds? Such an uncommon cancer, only 1% of melanomas are mucosal. Then came the devastating news on June 1st of a definitive pathology of Mucosal Melanoma.

It is such an unusual diagnosis; there hasn’t even been a large enough group sampling for a proper research study. All of the reports online offer a grim prognosis: local recurrence of disease after complete resection, distant metastases, overall 5 year survival rates of 12% to 30%. Although we always know life is short and we are all mere mortals, the realization that you are a cancer patient . . . hearing yourself say those words is still a shock. It seems surreal sometimes. My husband and my sons have been supportive and want me to have every advantage in treatment.

The local ENT doctor recommended traveling to a larger cancer center with more experience in melanomas. I researched and spoke with Head & Neck Centers at Vanderbilt, OSU, and the Hospital of the University of 

Pennsylvania. UPENN was so responsive and quick! I spoke with them on Thursday, May 28th and saw Dr. Kennedy on Tuesday, June 3rd. From there it has been a whirlwind. I’ve continued follow up care with Dr. Kennedy, met with radiation oncologist Dr. Michelle Alonso-Bansata, and met with oncologist Dr. Lynn Schucter. I have had MRIs, CTs, PT scans, bloodwork, x-rays, surgery and now am being treated with proton radiation. From June 3rd until August 3rd, I had made six eight-hour drives to Philadelphia and spent 19 days in a hotel. Financial costs were mounting and I wasn’t even on my treatment path yet! My treatment plan included surgical resection, followed by seven weeks of proton therapy five days per week, and finally chemotherapy or immunotherapy.

There are no medical facilities in West Virginia that offer proton therapy, and so the seven-week treatment recommendation created quite a problem. How can I leave my home for seven weeks and find somewhere affordable to stay?  We spoke with a couple of local hotels who have a relationship with the hospital; the cheapest patient rate was still $113. Per night! A search of local Airbnb looked like about $2500 to $3000 per month for a furnished studio apartment. I was beginning to question whether I should just stay in Charleston, WV for ordinary radiation due to the costs involved.

The Radiology Dept’s social worker told me about Nick’s House. I spoke with Sarah Mahony at the HEADstrong Foundation for more information and started the application process. We arrived at Nick’s House on August 3rd and I started my proton therapy the same day. Proton therapy does less damage to surrounding tissues. Since my cancer is considered a skull base tumor, damage to the optic nerves and my brain from regular radiation was a concern and reason enough to travel to Philadelphia.

Seven weeks is a long time to be away from home but I am ever so grateful for such a beautiful place to stay. Being able to stay here eases my mind, that my health care is not such a burden on my family. The financial burden of such extended stays weighed heavy on my mind. I just didn’t want to be such a drain on my family. The home atmosphere at Nick’s House is wonderful. The house itself is so beautiful and welcoming. I truly appreciate the vision that Nick and Cheryl had when they began this journey. Thank you so much for allowing us to be part of this experience. 

Kathy Barnett, HEADstrong Hero and Nick’s House Guest