Hi all,
R0se here with an update. I am 7 weeks out from radiation. I honestly surprise myself every day. I am gaining more and more energy. I am now able to run, practice yoga, and bike. I try to run or walk up to (at least) 15000 steps a day. *Pre cancer, I was a marathon runner who was practicing at least 3 hours some form of exercise a day.* I am no longer napping, but I do feel sleepier during the day. I also forget things. I try to be hyper organized to make up for it.
Food wise...I can easily (ish) swallow water, coffee, vitamin water, pureed things of varying consistency. I use my teeth to mash and then my finger to bring back very soft foods (peanut butter watered down, moist bread dipped in hot butter, croissants/donuts dipped in coffee, oatmeal with milk, frozen berries then microwaved until hot and mushy etc. I struggle with very "airy" things - chocolate mousse, the damned foam milk on fancy coffee drinks. Oh, and I cannot do apple sauce.
Alcohol and anything spicy...not happening. It feels like my whole mouth is on fire. I am not sure if this is because my mouth is definitely still healing or because my new mouth can't handle those flavors.
Speech...Im told that I am pretty clear. I can address strangers simply, answer the phone and have simple conversations, talk with my family. I try to be very loud, use simple vocabulary, use non verbal cues, and avoid sounds I can't pronounce. I cannot do g, d, or ch. Im sure there are more that I can't do. I have a prosthesis that does seem to help. It makes my voice louder.
Lymphedema...I still have it on my neck and cheeks. I look like a chipmunk. I can't get rid of it. It's super frustrating - 1. because Im vain 2. because my face is something I shared with my half sister and my dad. My sister and I otherwise look like exact opposites. I also saw my mother and grandmother in my old face. Now, all I see is a chipmunk.
PEG...still have it, but trying to use it less and less. I have managed to gain 10lbs (what I had lost since the start of cancer) within 6 weeks of radiation ending. Now, I am trying to swallow enough food to maintain.
My new goals are to somehow figure out how to drink alcohol (Im in my twenties and single, alcohol is very much needed), get the lymphedema under control, keep swallowing new things, swallow more things in a way that is not gross so I can eat with friends and family, get the PEG out, and slowly build my physical stamina. I'll be running marathons and working abroad again - just wait.
