5 months : 1 month : 2 days

now

august (reference: my before)

WHOOP! I'm 5 months post surgery, 1 month post radiation, and 2 days from moving home!

After surgery my leg was sore and difficult to move and weak. Honestly though, i barely noticed because it was the least of my worries. Now the scar is healed up (i am thinking of telling people it was a shark attack?). I'm walking as far at 4.5 miles a day. I can squat down and get up without help and have my former flexibility back (i was no yoga master to start).

The outside of my neck has recovered from the 'burns' of radiation and my stoma opening is thoroughly healed. My surgery scars up either side of my neck are healed up well.

This means that i was able to 'graduate' from the Lary Tubes (these are soft plastic that stick down into the stoma about an inch and a half, and while they don't really poke you, they aren't exactly comfortable either) with the collar that goes around my neck (annoying thing that feels icky and sometimes pulls on the tube and is unattractive) to adhesive mounts for my stoma cover aka HME. (see picture at the top). I feel liberated !!!!

You can see that the swelling aka lymphedema on the sides of my neck and in my face have largely dissipated. However, under my chin is still pretty swollen. It's hard to the touch and makes my neck feel tight. It's more swollen in the mornings and reduces after my lymphedema massages and as i am vertical longer. My reconstructive surgeon said that it will continue to reduce, but not reduce completely. That a good chunk of that is actually the hunk of thigh in there that replaced the space my tongue was in, and which doesn't have anything much to support it. A bit disappointing, but i guess my modeling days are long over anyway (HAHAHAHAHA).

Inside my mouth we have improvements! My thrush might be gone (see doctor tomorrow), and its not sore anymore. My gums are still a bit sensitive because i couldn't properly brush them for quite awhile with the sensitivity. I'm working back up to liquids with a bit more viscosity, more 'flecks' in them (like protein powder) and fruits (that had started to sting). My 'thongue' still feels like maybe i have a tongue that is pinned down to the base of my mouth. Perhaps that is just phantom limb syndrome, don't know. Still working on dealing with mucus management (TMI? ewww....but it is what it is folks).

My ear, not sure if i have mentioned this prior, but near the beginning of radiation my right ear drum filled with fluid. I saw an audiologist and lost about 80% of my hearing in that ear. However, the recommendation was to wait for it to drain on its own, which could take months. Very annoying. Then today i started getting some popping and clicking in my ear and boom - i got SOME hearing back!!! Fingers crossed that it continues!!!!

My peg tube site is all healed up!!!!

Up next on the docket: the drive home,14 hours of covid free bliss! (thankfully i'm excused from driving :). I will be taking it easy this summer doing some further recovery, doing my rehab exercises, building up my body strength, increasing my homemade liquid diet (vs Kates Farm formula) and moving towards purees. We return to UCSF on June 22 for a week of scans and follow ups. More scans in august-september, and then 3 month increments to 6 month increments to 1 year increments.

This isn't the end of the story, just the end of this chapter!