This morning we traveled to Moore Regional Cancer Center, where Buzz was to have CT scan. When we saw the RO yesterday, she failed to mention that Buzz would be fitted for his mask before the scan. So..Buzz couldn't do it. Had we been forewarned yesterday, I would have insisted on rx for Ativan! (I read it HERE, folks!) Buzz is extremely clostrophobic, and has PTSD issues. After a couple of hours with no success, RO gives us rx for ATIVAN and we are off to see chemo oncologist.
He convinces Buzz that a PEG is needed now, rather than later, and we are scheduled to have that done Monday morning, then back to Cancer Center with the little pills to try the mask and CT scan again.
Also learned that this RO does not administer Amifostine. The oncologist we saw at Baptist indicated that she would use it. When I questioned Dr. Patel today, she stated that she 'just doesn't use it'...
I feel very comfortable with Moore Regional, and trust our team to make the right decisions.
Buzz has rx for 30 Ativan with one refill available, if needed. HOPEFULLY, he won't need one before every treatment...Does anyone really get used to the mask after a while?
Thanks and God Bless each of you!

Lois & Buzz in NC

Lois,

Well, I am answering you again as you seem to be just a little behind us in the process and you have the same questions, I had.

Bill is horribly claustrophobic so the mask thing was definitely a worry for us. His last MRI (closed in) required 2 ativan before he was able to get thru it.

Scroll forward to the mask fitting. He was surprised that he was able to get thru the process by simply going somewhere else in his mind (he is a pilot and took a "cross country.") And the subsequent treatments have been OK...he is able to do them without meds (its pretty quick...maybe 5-10 minutes) and I am so thankful as it would have been awful to sedate him twice a day...yikes. Hopefully Buzz will adjust since the mask is open mesh.

I think the Amifostine is prohibitively expensive...probably one reason it is not used on everyone...our RO is not a big fan of it. I worried about it and decided that I couldn't control everything about his treatment and had to trust our docs (a little bit) to do the right thing.

Doesn't it just make you crazy to have all these decisions that seem to be life altering?? On one hand, you have to be your own advocate, on the other, you just want someone else to take care of you. ACKKKK!

I wish you the best and Buzz, a little bit of comfort getting thru his fitting! I am glad you are getting the PEG placed early...Bill was pretty pitiful for about 4 days. I would have hated for him to go thru that when everything else was yucky too.

Good luck, Deb

I had trouble also when they were trying to fit me for my mask. I also didnt like it when they tried to put it on me for my first rad treatment. I rememer getting into an arguement with the rad tech..LOL

I did however get used to it. When you go day after day it becomes just another part of the whole ordeal. Im sure Buzz will get used to it to.

Good luck to the both of you and God Bless both of you also.

Billy

Lois, tell Buzz that John kept himself centered, while in the mask, by counting the seconds between each buzz of the IMRT machine-he knew exactly how many seconds for each blast-and when he would be done. Encourage him to find a mind game to play [and Ativan should help too]. Since I am an advocate of peg tubes, I', glad for both your sakes that he is getting one. Amy in the Ozarks

Jack was also claustrophic in the mask and used ativan every time but also found the technique that Amy is describing. He will get to know the timing of the machine pretty quickly. He never got used to the mask, he just found ways to compensate so he could get thru it. The ativan is a good way to go. Regards JoAnne
PS..and the PEG was a lifesaver

Lois, I never had a problem with the mask at all. However, I do have one suggestion. I have done the radiation thing twice now, just recently completing the second time. There is ALWAYS music playing in the treatment room. Have Buzz bring along one of his favorite CDs and have them put it on for him. Music works wonders!!

I have a lot of New Age relaxation/massage CDs. If Buzz in into that sort of thing drop me a message with your address and I will send some to you. I found that by playing them at home that I did not require as much pain medication also.

Bill

Lois,

I won't sugar coat it from my perspective. I did not find the mask itself to be such a problem. The problem for me was having the mask clamped to the table once climbing aboard each morning before treatment. Just something about the feeling of helplessness and immobility of having my head clamped down to the table freaked me a bit. One of the techs who attended me quite often told me that probably close to half of the patients required medication prior to radiation due to the anxiety. He also said that the men were worse than the women as a whole.

Bill D.

MANY THANKS to each of you for sharing your thoughts! I've printed all of your posts to share with Buzz, so that he will know that he's not the only one needing a little assistance with the coping.

Like Bill, Buzz is a pilot. He's also a world-sailor and (I've always believed) that he was born WITHOUT the 'fear gene'...He's been my HERO for more than 26 years! and is absolutely the smartest man I have ever known.

I believe it's more difficult for you guys who have always been in total control of all situations....He feels that he let me down this morning, which makes no sense to me at all!

Again, thanks for your input!

The mask, for me wasn't exactly a nice experience. But needs must and all that hey?! My mask was made of lattice-like plastic, so it left my face looking a bit like a collinder when it was taken off. With kriis-kross patterns on my nose, cheek, forhead and chin. By the last week of R/T i'd lost so much weight that it didn't have that effect anymore. I guess i kind of got used to it. I'd just drift off in m mind, it helped because in the R/T room the ceiling had pretty pictures & i'd imagine myself under the blossom tree or sitting in the field.
My main issue was with being sick. Because i vommited every day for about 3months i was terrified i was going to do it with the mask on, and i'd end up drowing in my own sick and noone would help me! Crazy i know! Thankfully i managed to hold off being sick until they'd unclip me and i'd dash to the loo!

And as for the PEG - i wouldn't be here without it!

Good luck!
Michelle

My mother had to use the ativan. It helped.
Tell Buzz that the techs are right there watching. Once mom started to scratch her nose and Marshall started yelling, "Rosemary!! What are you doing? put your hand down!" I walked over to the curtain and asked what was wrong and he told me. It made me feel a little better knowing what was happening. By any chance, have you asked if you can go in with him to see what they do before they begin? It helped me in doing so. Anyone who can endure being bolted to the table, repeatedly, is my hero. Gave me a different perspective as a caaregiver.
Good luck to Buzz and Bill!