Deb Sweeney's Catastrophic Cancer-Related Expenses
Donation protected
It all started with some tooth pain in August 2018 at her 50th birthday party. During dinner she complained her teeth hurt. Weeks of taking over-the-counter pain meds, attempting different brushing and chewing techniques; she visited the dentist. Exam, X-rays, and a cleaning resulted in a diagnosis of sound teeth with no reason for pain.
By October the electric shooting pains in her neck and head had begun. This prompted a visit to urgent care. The diagnosis: a swollen lymph node, but had a CT scan, result 1-inch mass at the perotid salivary gland left side. [“Don’t worry though, 90% are benign”]. Visit ENT to discuss removal; review films and MD’s opinion: DO worry a bit, this doesn’t look benign. Needle biopsy: it’s cancer but we don’t know what kind.
December 3, 2018 surgery. Tumor removed; facial nerve traumatized; facial paralysis. Pathology took a week. Results margins not clear and the cancer now has a name: High grade mucoepidermoid carcinoma. Very rare, very fast growing, and penetrated the lymph nodes and vascular system. Survival at 5 years with aggressive treatment: 50 per cent—and lets not talk about at 10 years.
Referral to radiation oncology; meetings with radiation and medical oncology. Decision from these meetings: 6 weeks of beam radiation and chemotherapy. Christmas Eve 2018 MRI for planning session for beam radiation. January 4 2019 radiation oncology sees cancer in the MRI maybe. Very large likely cannceois lymph nodes visible.
Referral to head and neck cancer surgery at UC San Francisco.
UCSF head and neck surgeon reviews MRI, recommends additional MRI and likely more surgery including facial nerve removal, skull base removal and other resection. Weeks of planning, poking and trekking back and forth from Sacramento to San Francisco, 2-3 times a week.
February 25 2019. 17 + hrs of surgery: Skull base removal, facial nerve removal and temporary graph, drilling out part of the skull, partial jaw removal and install of a metal plate.
Total left side facial paralysis, loss of control of left eyelid. Number Nine nerve damaged causing swallowing issues.
Six days in the hospital and scheduled more surgery for Monday March 4, 2019. Expected 2-3 days in ICU followed by three or more in cancer ward. Six weeks of healing, then 8-10 weeks of beam radiation and chemotherapy.
Deborah’s husband Dennis has lost one full month of work caring for her post December surgery: several days a week providing transportation and support for the San Francisco trips. Two plus weeks so far for the February/March surgeries.
Deb has not been able to work at all; teachers do not get disability from their employer and school districts do not pay into social security. Deb’s income is zero with no option for any private or government disability. A teacher can’t teach without talking and Deb can’t.
Travel, hotels, and expected home care are not covered by insurance. Loss of work is not covered by insurance.
Dennis estimates that between deductibles, out of pocket medical expenses, travel and misc they have spent $20-30,000 on her treatment; loss of work and income increasing that number substantially.
Dennis needs to return to work and that means home health aid for Deb at least part time. Home health aids are not covered by insurance; post-op trips to SF are likely to be many. Even if Deb is able to work again she missed the rounds for next school year so will lose at least two years of work if not more. That teachers have no recourse for disability is a sad comment on how we value the people who educate our children.
By October the electric shooting pains in her neck and head had begun. This prompted a visit to urgent care. The diagnosis: a swollen lymph node, but had a CT scan, result 1-inch mass at the perotid salivary gland left side. [“Don’t worry though, 90% are benign”]. Visit ENT to discuss removal; review films and MD’s opinion: DO worry a bit, this doesn’t look benign. Needle biopsy: it’s cancer but we don’t know what kind.
December 3, 2018 surgery. Tumor removed; facial nerve traumatized; facial paralysis. Pathology took a week. Results margins not clear and the cancer now has a name: High grade mucoepidermoid carcinoma. Very rare, very fast growing, and penetrated the lymph nodes and vascular system. Survival at 5 years with aggressive treatment: 50 per cent—and lets not talk about at 10 years.
Referral to radiation oncology; meetings with radiation and medical oncology. Decision from these meetings: 6 weeks of beam radiation and chemotherapy. Christmas Eve 2018 MRI for planning session for beam radiation. January 4 2019 radiation oncology sees cancer in the MRI maybe. Very large likely cannceois lymph nodes visible.
Referral to head and neck cancer surgery at UC San Francisco.
UCSF head and neck surgeon reviews MRI, recommends additional MRI and likely more surgery including facial nerve removal, skull base removal and other resection. Weeks of planning, poking and trekking back and forth from Sacramento to San Francisco, 2-3 times a week.
February 25 2019. 17 + hrs of surgery: Skull base removal, facial nerve removal and temporary graph, drilling out part of the skull, partial jaw removal and install of a metal plate.
Total left side facial paralysis, loss of control of left eyelid. Number Nine nerve damaged causing swallowing issues.
Six days in the hospital and scheduled more surgery for Monday March 4, 2019. Expected 2-3 days in ICU followed by three or more in cancer ward. Six weeks of healing, then 8-10 weeks of beam radiation and chemotherapy.
Deborah’s husband Dennis has lost one full month of work caring for her post December surgery: several days a week providing transportation and support for the San Francisco trips. Two plus weeks so far for the February/March surgeries.
Deb has not been able to work at all; teachers do not get disability from their employer and school districts do not pay into social security. Deb’s income is zero with no option for any private or government disability. A teacher can’t teach without talking and Deb can’t.
Travel, hotels, and expected home care are not covered by insurance. Loss of work is not covered by insurance.
Dennis estimates that between deductibles, out of pocket medical expenses, travel and misc they have spent $20-30,000 on her treatment; loss of work and income increasing that number substantially.
Dennis needs to return to work and that means home health aid for Deb at least part time. Home health aids are not covered by insurance; post-op trips to SF are likely to be many. Even if Deb is able to work again she missed the rounds for next school year so will lose at least two years of work if not more. That teachers have no recourse for disability is a sad comment on how we value the people who educate our children.
Organizer and beneficiary
David Madison
Organizer
New York, NY
Deborah Sweeney
Beneficiary