@colleenyoung I am doing “OK”. Slow progress, but progress I’ll take…just had a follow up with my team and had a scope down my throat, doctor said no visible signs of cancer remain, so I’ll take that win. Going in for a CT scan next week…

What do I wish I had known? Hmmm…I always felt pretty alone on this journey, a lot of the “why me?” thoughts in my head. But I just ran into an old friend this past weekend who had the exact same cancer and treatment as me. And he mentioned another mutual friend who had the same deal just last year. So I’m not special, lol. And somehow it was reassuring
….

@colleenyoung I wish my team, anyone that is, would have Clearly and Completely explained the truth about how much damage radiation can cause to head and neck because if I had known then what I would be going through now I would have made some different decisions. I likely would’ve had more dental work taken care of even go through getting teeth pulled out and implants put in. Now I am extremely limited in my choices and risk of infection is extremely high. I might’ve given more consideration to not having the radical neck disectomy because of the damage it did the numbness from cutting nerves that likely will Never heal. My surgeon told me there was a chance that nerves could get cut but that he’s going to do his best to be careful… making it sound as though he would be able to perform the surgery without the resulting damage. I am grateful to be alive and up until about a week ago I thought I was still cancer free. My surgeon sent me for CT with contrast one week ago for a hard lump where my jaw meets my neck. The scan was severely degraded due to prior dental work and I’m still waiting on a response And praying it’s not cancer related. I’m about 2.5 years out from the end of radiation and still haven’t been able to gain weight back even with the high calorie boost mixed with vitD milk twice daily and regular meals. My appetite is still very low and I’m still tired too much of the time. I’m wondering why. I thought chemo caused more problems than radiation and was glad I was told that I didn’t need chemotherapy and that radiation would take care of my needs. I just wish More Emphasis was actually placed on defining what radiation and chemotherapy could do versus radiation or chemotherapy alone. I don’t mean to sound ungrateful because I’m definitely grateful to be alive. I just wish that the medical professionals would have been completely direct, transparent, and even blunt about everything. Especially when I told everyone to not hold back and to just be completely honest and direct.
This all feels like too much especially when now I’m really kind of fearing the worst again.