We started to see a local oncologist in Bloomington, IL along with a local dermatologist. The treatment was Light Therapy, oral chemotherapy and other topical and oral medicine. Six months later the spots were on my face, arms and back. My cancer was getting severely worse. My husband and I were determined to find better care and soon were heading to the University of Chicago. At this point my entire body is covered by spots that crack, bleed, itch and are severely painful. I am also losing my hair in patches on my head and have lost all my eye lashes on my right eye.
Our doctor at University of Chicago is specialized in this rare form of Cancer, which we were glad to find, as many of the oncologist we talked to have only read about this rare form of Cutaneous T-Cell Lymphoma in med school. We soon would discover that not only do I suffer from a rare form of cancer that there is NO CURE for but that they can only treat the symptoms.
After many more skin biopsies I was given the news I had a very rare subset of this cancer where the cancer attacks my hair follicles, which is what caused me to lose my hair and my eye lashes. About 3 months ago at one of my bi-monthly visits to Chicago, another set of biopsies were done for more testing of the large lesion-like tumors. I was told to cover them with basic wound care. On top of having the biopsies taken we were given the news that my doctor was leaving the University of Chicago and moving to California to do cancer research. We would now find ourselves being referred to Northwestern University in Chicago, IL, to a doctor that has knowledge and specializes in this form of cancer.
On our first visit we were inundated with many different doctors, dermatologists, onologists and research personnel. We felt amazing about the level of care and their plan to aggressively attack the cancer. After my second at visit to Northwestern, my biopsies that were done a month ago, were deep and still not healing and VERY painful. My immune system is weakened from the cancer which makes me susceptible to infections. I had already been on two rounds of antibiotics for a staph infection that developed on another spot. Now to find out after yet more tests that I had a bad infection and a different and stronger antibiotic was prescribed along with special instructions of an additional regimen to do daily and weekly to help prevent infections from growing in my lesions, plaques and tumors.
I am losing sleep, along with having to deal with painful spots on my eyelids, ears, feet, and every thinkable inch of skin on my body. We were soon given the news that my form of cancer is even rarer then we have already thought, my T-cells are CD8-/CD4-. Now I will be soon starting radiation treatment along with interferon injections that my husband will be giving me, along with the daily treatments of Valchlor that he has to rub on my skin.
The Northwestern team of doctors have prescribed a different form of UVB light therapy. We will have to watch my lesions and spots very closely along with my blood panels with the Interferon and it can possibly make my lesions worse, drier and more sore than they are now.
We have to drive to Chicago every two weeks for appointments, along with my local oncologist appointments, for the radiation treatments and UVB treatments. With having to take off for all these appointments and the driving back and forth to Chicago, the cost of gas, parking, copays, and medicine, my doctor bills are piling up to an uncontrollable level that any normal person could handle. On top of all of that, my husband had to have a knee replacement surgery this past December and lost his job for quite some time. He just recently found a temporary job working as a 3rd party in a call center. He does not have any benefits, so when he takes time off to take me to doctor appointments or care for me, he does not get paid.
Even with his job we struggle to keep a roof over our heads, gas in vehicles, food, and utilities paid. This is a physical, emotional and financial battle. We would appreciate any and all prayers that God heals me and any financial gift will be used to help cover and kick this cancer's butt!