I think that the best way to get this is to basically make the small steps seem big. I hit single digits left in radiation as of Friday. My next appointment, on Tuesday, brings it to the half way point. After Wednesday, I can say "only one wednesday left"- same with Thursday and Friday. Then, next Tuesday, it turns into "only one weeks worth". Then I start checking those days off- "never again on a Wednesday", etc.
They keep prepping me for pain. I'm sore, but I don't hurt. I will admit, I am a bit afraid of what to come. But at the same time, I'm doing well. I believe that I'm in good shape for where I am in the treatment. I look at other people at the hospital who are in a similar place to me, and know that I am less red than they are, that I am still smiling when I know they are not. I'm holding out hope that the pain won't be too bad, but like I said, boy, are they prepping me. I was told that they are expecting me to likely be needing 3 oxychodone every 4 hours, and that even then, I may be in a 5 out of 10 pain the whole time.
On Friday, the overall appointment went well. I am still gagging occasionally under the mask, and had to have them remove it just prior to radiation as I couldn't stop. It usually just takes a couple more minutes though, and I'm good to go.
I was also placed on two more medications on Friday as well. The total is up to 15. The latest are for thrush and to break up mucus.
I think that the discomfort in my mouth is the hardest. Sorry if I get to graphic for some, but this is what it is. The mucus is so thick when I have it that sometimes it's just hard to swallow it. Other times, really most of the time, my mouth is so dry it hurts. Liquid doesn't help. Originally one of my anti-nausea pills was a dissolve on your tongue pill. The problem is that I would take one, and 10 minutes later, in the middle of my tongue it would sit, maybe just a bit smaller.
This, I know, will get worse before it gets better. But, it will get better. They say that the salivary glands on the right side of my mouth are dead and gone. They won't come back. The glands on the left side of my mouth will eventually produce more saliva, and kind of help bring my mouth back to a normal stage. It just takes time. That is also why I have to do half hour flouride treatments to myself for half hour every night for the rest of my life- it's your saliva that coats and protects your teeth.
I think I mentioned it in my last post, but taste really is pretty much a thing of the past now. There are still just a few things that taste, but most of them taste the same, and taste nothing like what they should. My parents were nice enough to buy cheesecake for me last night- even with berries on it, I could taste nothing. Tonight, we had spaghetti, salad, and bread for dinner. I could taste the salad dressing. Certain things are starting to hurt too. Garlic, for some reason, burns. Hot drinks feel like I am just burning another burn more.
Eating is definitely no longer fun. I was told in the beginning of treatment that I would need to consider it a medicine- that I would have to make myself eat. I getting to that point. With no flavor, most foods just aren't enjoyable. I start to get nauseated if I don't eat though, so I still have good reason to keep myself full.
I don't remember if I mentioned this in my last post, but I have lost three pounds since radiation actually started. I got a text from my aunt teasing me that hey, at least I can lose weight out of the deal! The problem is that if I lose too much, the mask doesn't fit right, and they lose control over where the radiation is hitting. Three pounds is in their safe zone, but keeping my weight consistant during radiation is pretty critical. Losing too much weight brings the possibility of the worst side effects, like parilyzation, up. I will say though, that since the surgery, I have lost 13 pounds. The surgery was on December 9.
At this point, I want to tell everyone I am HONESTLY doing very well. I have days of emotional and physical difficulty, but for the most part I am doing good. I post a lot of the difficult stuff in hopes that someday maybe somebody going through the same thing as me may get some information that they need- to know what to expect.
I know I'm lucky- I have the most amazing support group. Mom, Dad, Beth, Bryan, Ann, Ralph, Seth, Kim, all the friends that have offered to meet me for coffee to keep me company, to my extended families, who call my parents all the time to check in on me, to all the people who read this, who post words of encouragement on facebook, you are making this somehow a positive (in a twisted sort of way) experience for me. Your prayers, thoughts and support help. Tremendously. Lastly, Amy, thank you. I know that this is so hard. Thanks for the late night talks when I need them, for coming up every weekend, for giving me the tough love when I need it, and the comfort when I need that. You are amazing to me. So thank you all. I will post this again- I will probably post it often. Without any of you, I don't think I could do this at all. With all of you, you make it easy.
Nine more treatments.