My radiation journey - Week 4

Woohoo! 4 weeks down is awesome. How do you feel about the mask? Is it easier?

Sleeping well? Any narcotic pain Meds? They keep pushing it on me, but I'm not in pain yet. Monday will make week 2 for me.  

Any issues with mucositis? Stiffness of neck? Jaw?  I'm hanging on to your coat tails until I'm done.  

You are doing really well, weaving and dodging many of the typical side effects. Without any taste, eating becomes a chore but keep eating and drinking fluids as much as you can. I can't think of a single person who was heavier at end of treatment. Hang in there!

Rottiesmom, I'll be thinking of you. My last session is July 12th. There are two visits where I go in same day for two treatments. I'll be fully baked by then!

Thank you Lise...so you will be just about done as I start!  Wow...2 in the same day?  

stevenpepe said:

Hi Lisa, none of those issues

Hi Lisa, none of those issues yet. My jaw does feel a little stiff but then I had a neck dissection, as well. I already had a little stiffness in my jaw.

I am avoiding narcotics if I can. I am on Gabapentin, which is designed to help with narcotics, should I need them.

I am sleeping well and still working half days before I go for treatment.

Sadly, I lost most of my beard from the radiation. I really hope I get it back. 

The mask is a piece of cake now. Treatment is only 10 minutes, so I'm comfortable with it. The first 2 or 3 times felt very claustrophobic.

No mucositis yet but my doctor warns it's coming. I'm doing lots of rinsing and drinking. Maybe I'll get lucky and avoid it. Time will tell.

Stay positive! I'm hating this but holding on to the prize, which is a cure. I hate that I got cancer and still trying to understand why me? I was such a low risk and it kills me to see how rare tongue cancer is. I haven't met anyone with this cancer and it bothers me that my speech is so altered, making me very uncomfortable to talk with people. I am HPV - with a light history of tobacco dating back 25 years. It seems so unfair to watch people smoking and drinking with no consequence. Some quit and never experience this. It really sucks. People can't understand how I got this when I took such good care of myself.

Ok. I will stop complaining now. Let's keep moving forward with this.

I too found myself searching for an answer to the "why me" question. First I thought for sure there was a law that you can’t get a cancer you never even heard of. I had no tongue cancer risk factors, such as tobacco, alcohol, HPV, eating hot coals, etc. In fact I was in absurdly good health having competed in my last Ironman triathlon only a year prior to my diagnosis.

One day I was feeling sorry for myself and I guess I laid the whole “why me” trip a bit too heavy on one of the nurses. She told me she would take me to the area where they’ve figured out the answer. Even though I realized she was only half serious, she did have my curiosity going, and as we were about to enter the elevator, I asked where we were going. She quickly answered “the children’s ward”.

Not only did I never ask that question again, that night when I got home, I checked my birth papers. I did find a birth certificate, but nowhere was I able to find my fairness certificate.

My advice to anyone who is willing to listen is that all the energy you spend on the “why me” would be put to far better use elsewhere. I realize it’s easier said than done, as my mind still does occasionally drift in that direction. When it does, I think back to the children and realize that in the grand scheme of things, I could have done a lot worse.

 Also glad to hear you’re still working. I found keeping busy to be a very good form of therapy. 

My fingers are crossed for you, Steve. Hoping it doesn't get worse.