Now that it has been 4 weeks since the surgery we are ready to begin rad/chemo on Monday 10/1. I made it through having the mask and mouth piece made but not sure how it will be having to wear that mask for 20 mins. Trying to stay clam and focus on anything other than what is going on but still will need the Xanax to get through it. Getting nervous about what the side effects to both are going to be too. My daughter (and care giver) and I have made a few liquid meals to see what taste good (even though I'm sure that will change)Turned pot roast with carrots into a soup and put it in the freezer. Have to say, it was pretty good. MO recommended the PEG so that goes in next week too. I'm trying to stay positive and hoping for the best. It's just a lot to taken in. MO said they will do 7 doses over 7 weeks instead of the 3 big bags to try and reduce the severity of the side effects but still looking at nausea, lose of appetite and of course hair lose. The only good thing is I have a few extra pounds to spare so it won't be a huge problem if I loose the expected 15 - 20 lbs. Just don't want to loose much more than that. Here's hoping for the best!
DeniseM: Sounds to me like you have so many positives in preparing for the Rad Tx. It's good that you have a few extra pounds to spare and you're getting meals ready. Plus you have a great caregiver. Before my son started his Rad Tx, I think I was more nervous than he was! But he did just fine. The Rad Room attendants would play whatever music he wanted or he could bring his own. Some people bring audio books to listen to or work out math problems in their head. Or you could work out a decorating plan for remodeling your kitchen. I'm sure the Xanax will help, too. Others just count the # of zaps you hear so you know how close you are to finishing. Your pot roast recipe sounds good. You could probably go over in your head all the steps to making it and pretend you are doing it for a TV special. Wishing you the very best as you start your rad/chemo on Monday! Do let us know how it went and what you did to make it as easy as possible.
Yes listening to music and the louder the better, can help pass the time. As with just about anything, you will get use to it.
Are you using Fluoride Trays?
Be mindful of using that PEG. Your swallowing muscles will forget their purpose quickly if not used daily so use the PEG but only when necessary.
Regardless of your weight now, you must consume a ton of calories and water each and every day. I recommend 3000 cals and 48 ozs of water a day starting yesterday.
Keep posting. Ask us questions or complain about anything. We know what you will be going through so treat us like your BFF.
Denise, at this time you will want to eat everything you can and then have seconds. Dont worry about gaining a couple pounds, your metabolism right now is burning calories rapidly. One things you mentioned above is its ok to lose weight. The goal during this is to lose NO weight at all but thats pretty hard to do. When you are losing weight during treatment, its muscle not the extra weight. I too thought 'its ok to lose weight' and that landed me in the hospital for malnutrition and dehydration. It seems like 3000 daily calories is too much but your body is burning calories at such a rate that even if you would take in more than that you would not gain weight.
Even with the PEG site you will want to keep eating and swallowing every day even if it hurts. Your sense of taste will change and the delicious soup you might want to eat early in your treatments.
Best wishes!!!
I am going in for my mask to be made and PET scan Monday. Best of luck with everything!
Denise M: I pray that you will do fine while getting your treatment Monday. I always kept my eyes closed and tried to "zone out" myself by thinking about past trips I made, funny things I did in the past, and just anything but where I was then and what was going on. It's scary at first, but then you sort of know what to expect each time you go. Anyway, hope you do fine.
Curly: Good luck with the Mask Monday, and more importantly, the PET - I send a prayer for good results.
Julieann
I did the same, kept my eyes closed and pretended I was laying on the beach getting a suntan so I didnt move.
Denise, stick with us and we will help get you thru this.
Best wishes!
Thanks everyone for the encouragement! We made a few more meals today's and I will keep in mind to swallow daily no matter how much it may hurt. My daughter said she'll "go boot camp" on me (she was in the Army) if need be to make sure I'm getting at least water down and hoping to not need the PEG to much. We looked through some old pictures today of family trips and of when all 3 of my kids were small so I'll fresh "memories" to think about while doing the TX's. I have a great imagination too so coming up with things to think about shouldn't be difficult! I'll give an update next week and all that are going through this can stay strong and have a great outcome!
DeniseM, I am also starting treatment 10/1. My MO is going with the 3 BB with me. I asked about the small bag, he said I should stay on the 3 BB cisplatin. He also said as of Monday we have a new full time job - eat and drink all day and every day. This will be over for thanksgiving.
I want to wish you all the best of luck when it comes to having the mask used. I was scared to death, but they played my music and gave me a vary low does of ambien to stay calm, and the technicians were funny and very friendly. I wish I would have found this forum before I went in TX. I was never told to eat and swallow as much as I could. The radiation can do alot of damage depending on your need for it. Take care Curly, Denise, and Hockeydad! I look forward to your next posts.
Good luck the both of you? Think healing thoughts
How did the first day of treatments go?
Donna
Wish you luck. The mask is worse to think about than wearing it actually is. Just try your best to relax. I went through 35 IMRT sessions and it got easier each time. Not that radiation is any fun (I'm an nerd, so it was interesting for me to watch the machine in action), but in my experience surgery was the most difficult part.
This is for anyone feeling anxious about getting fitted for The Mask and would like to see what one looks like. My son had asked one of the nurses in attendance to take a picture which I have uploaded to my web site here:
http://webpages.charter.net/xila/He did extremely well and I never saw any anxiety on his part. The attendants were so very helpful and even invited me to go along to see everything in the Rad room. I think it put both of us at ease about what to expect.