Hi all,

Here is an update on my progress for those who like to know what may be ahead. I have Adenoid Cystic Carcinoma (a super rare cancer that has no known cause -ie NO LINK to HPV, alcohol, drugs). I finished my six weeks of radiation on December 16th. Before radiation, my entire tongue (total glossectomy) and several lymph nodes were removed. Before the surgery, my medical team attempted two rounds of induction chemotherapy. The chemo did nothing. Before cancer, I was (still am!) a marathon runner, yogi, vegetarian, world traveler in my twenties working in the humanitarian sector. Here is how I'm doing now:

Feeding tube: My feeding tube was removed in February 2020 following a month of stable weight gain without using the feeding tube.

Swallowing: I mostly eat pureed soups and smoothies. However, I eat a soft solid with every meal. Yesterday, I only ate soft solids for lunch and dinner (a quiche and vegetarian lasanga). I swallow using water and my finger to push things back followed by effortful swallows. I cough to bring food back up that is stuck in my throat. I cough literally all the time during my meals to prevent food from getting into my lungs or choking me. I have eaten out with others, but if I do I stick to pureed foods and very soft solids in small bites. I prefer to eat alone.

Taste: My taste is not great. I can taste butter, peanut butter, coffee, coffee flavors, milk, squash soup - anything that is intensely savory. PLEASE REPLY IF YOU KNOW OF OTHER SAVORY FOODS THAT I CAN TASTE. Tomatoes sting. Orange juice stings. Alcohol is fire. I can stomach a cocktail if it is 3/4 juice. I cannot taste bad chocolate (Hersheys, etc) but I can taste brownies or very rich chocolate. I taste it the most when it is on the roof of my mouth or at the back of my throat.

Speech: My voice is awful, but largely intelligible. I was able to hold my own during a Skype interview with the camera turned off. I barely have to repeat myself anymore. I speak very slowly on purpose and choose words that I know I can say or fit the context. I never use complicated vocabulary. I miss speaking eloquently.

Swelling: My face is most swollen in the morning. I have a Flexitouch machine which I use for 45 minutes every morning and evening. I also have a compression mask that I wear during the day if Im alone and don't have to talk. I try to wear it when I sleep, too. This routine appears to be working. I'm told that my face looks like a normal face.

Physical Activity: I am running two hours a day again. I also try to bike or walk or practice for an additional hour. I'm a slow runner, but improving steadily.

Job: I lost my job because of the cancer. I'm looking for a job now. It's a really hard time to be looking and I'm very worried. I loved my work. This year has been very hard without working - work is what makes us matter, no? ANY ADVICE/THOUGHTS ARE WELCOME.

Dating: I have scars from the port, the surgery (one from
ear to ear below my chin, one down my entire thigh), and one from the trach. I'm afraid to date.