Dittoing Christine! My job was already (fortunately) homeschooling, and Scout leadership and other youth work. That was / is volunteer work, but still needed doing. Luckily my co-leaders stepped up and filled in the gaps with both my girls and my guys so I could just go as I felt able, in the beginning. (There was a humorous meeting where I went just to help out one night and the project ended up being about writing haiku, and it turned out I was the only adult who'd done any ... and I'd just had the surgery and could barely talk ... gah! Try pantomiming haiku! LOL. But we did have a blast.) After a time, though, I had to let it go no matter how much fun I was having, because all those people meant all those germs ... and it wasn't something I could risk. And then there wasn't the energy. It taught my scouts a lot about being supportive of folks who need help (and continues to do so), but it was frustrating to adapt to ... and I kind of expected it.

I had some sweet caregivers from church who helped get my children to some of their special activities when I couldn't ... they arranged it between them, and I didn't always know who was doing what (it was a small group, and all women I trusted, but I didn't know who was driving which days) ... and even today, my memory is fuzzy enough, I don't recall who all helped .... I wish I did. I'd thank them more. I thanked them at the time, but I'd thank them again now, because it really helped us all. Caregivers are a big help, in more ways than they realize. So, because I can't thank all of them, I'll pay it forward and thank you instead. smile Thank you for being a caregiver!


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery