First, just a summary: I am still cancer-free. Two more visits to my ENT and I am officially 5 years out from my treatment. I recently had to make an extra ENT visit due to a sore salivary gland. Needless to say, I take no risks. It turned out to be a submandibular gland with goopy saliva (a problem I learned is associated with dry-mouth). The solution was to work it out of the gland with sucking on lemon drops (any hard candy), extra water consumption and manually pushing the gland in the direction of the duct to move the saliva out.

Second: I am occasionally asked by someone I know if I could talk to someone else who has recently been diagnosed with tongue cancer. I always say yes. If they want advice, I tell them my list of “do-differents”. I am going to list them here, as I always give them this link to my cancer journey. So here we go!

If I had known...
1) I was going to have altered taste after my first chemo, I’d have waited to start chemo until after the feeding tube was in. (Know that the chemo dose will be adjusted and #2 is easy peasy.) 

2) My body was going to burn calories like crazy healing itself daily from radiation, I would have supplemented food with liquid food via the feeding tube every day. I needed something like 3000+ calories daily afterwards to heal and try to put weight back on. I will struggle to maintain my weight for the rest of my life. Right now, I am at 142.5 and I must eat about 2100 calories a day or I lose weight.

Things that helped me:

1. Use Aquaphor on the skin after radiation every day. As time goes on, ask your team if there is something they can give you to help the burns.

2. Find the correct chat room on Amercan Cancer Society website: cancer.org, the survivors’ network: Head and Neck cancer. This was the best place to get helpful information on dealing with side effects from people who have walked your path.

3. Drink your 8 glasses of water everyday. You want to keep your swallow reflex intact. I always got one down when I couldn’t sleep at night.

4. Do your mouth/tongue exercises everyday. (See #3.)

5. Find your comfy spot in your home and if you live there for 7+ weeks, staring out the window and watching whatever appeals to you on TV, that is perfectly ok.

6. I found that swishing a tablespoon of coconut oil in my mouth in the morning helped relieve any soreness in my mouth. (Don't spit it in the sink.) It is by the Crisco in the grocery store.

7. The treatment is tough, but you will survive. (Advice from my 1st ENT in FL.) It is and I did!