Well, THAT was one of the most unpleasant experiences I've had so far (besides the surgery...)! Got the mask made today in preparation for IMRT, which will start in a couple of weeks. Definitely thinking Valium for the treatments (x30); I had thought I'd be stoic and meditate or something while I had the mask on, but now I know better -- it's NOT going to work, being bolted to the table!

Anybody else out there with claustrophobia who had to do the mask? How did you deal?

Chris,
You'll get used to it quickly and as you lose weight, it will loosen up as well. Look on the bright side. It's insurance that the least amount of healthy tissue will be destroyed during treatment. I was prescribed Zanax and did meditate a lot during Tx. I slept through many treatments towards the end.

Chris,
My mom went through tx's on ativan, she is extremely claustrophobic! do what you need to do to make it through!
I was shocked when my mom told me what she had to go through, I asked the techs if I could see what was happening. I was with her when they put her mask on and snapped her to the table. NOTHING could have prepared me for what I witnessed. It gave me a whole different perspective to what she was enduring. You CAN do this!
There are several people who have posted about their issues with the mask, use the search engine to the right and type in mask and you will see lots of stories!
My mom still talks about the mask, and she recommends that if you are put on ativan, don't wear flip flops when you are on it! she smacked her head the one day because she was so unbalanced--of course being dehydrated didn't help!
In case you are wondering, she is doing great today, actually helping me have a beautiful high school graduation for my daughter! The mask works.
Good luck,
Donna

Thanks, Gary and Donnarose, for the words of encouragement. Ativan sounds like a place I might start...and try for some meditation at the same time. I just hadn't expected it to be so tight...had heard about the bolts, but c'mon, these are industrial! I'll try to keep a sense of humor about it...maybe use it for Halloween when I'm through...

I'm glad your mom is doing well, Donna. That's fantastic! I will search for more stories about the mask.

Thanks-

They're not really bolts - they are snap fasteners and the techs can have you out of the mask in seconds if need be.

Ativan also helps with nausea a little. It can also be taken sublingually as well (under the tongue).

I am still going to make a Chia pet out of mine...

I had a second one that wasn't right, so they gave it to me. I hung it in the yard and the UV disintegrated it.

Chris,

I could feel my heart beating the first time I was clamped down but the next time they played loud music and it never bothered me like the first time again. Obviously I didn't like it but that "I gotta get loose from this thing" only lasted the first time. Measurement days (every Monday) added about an extra 10 mins or so clamped down. I also had to hold a rope in each hand connected to a strap around my feet to keep my body as rigid and motionless as possible.... and we'll have fun fun fun till your daddy takes the T Bird away.....

Wow, the rope sounds like an added bonus feature!

I have my own bonus as well: I get to hold my mouth open with a block between my teeth holding my tongue down so the radiation will go directly to the roof of my mouth. The block was shaking so hard today I had to hold onto it with my hand (and even that didn't help much). Maybe that's where Ativan would help some, too...

The Chia pet sounds like a marvelous idea, Gary. I can picture it now...

BTW, David, did you ride your bike during radiation? If so, how much? I'm just curious...

No ropes for me, they had long rubberband type things I had to hold on too.

Chris,
I posted back in Oct about me and my mask. I didn't make it through the fitting. I had to quit and go home. I was crying when they let me up. I thought I would never be able to do it. Next day, me and the Ativan made it through it. The techs also cut the eys and nose out of my mask so I could "breath". They showed me how to "unbolt" myself if needed. They showed me that they had a monitor and if I couldn't make it to just wave my hand and they would be in there in seconds. I never had to do it. By the last weeks of rads. I stopped taking the Ativan. I didn't need it anymore so why bother.
I left my mask, I didn't need it. I wont forget.
You'll do fine.
Amy

Simply stated: Xanax was my friend.
Also, the more tx's completed, the easier it became. I kept mine also, so I am with Gary and Chris,... Chia pet!!!

Bring your own music....I was able to meditate...near the end it was a little crazy but it's doable...You will be fine!!

I'm with you Ray. I burned a CD that I listened to everyday. It was all up tempo contemporary Christian and thumpin' Gospel. It really helped. Music is very important to get you through this.

Zanax was my friend too ;-)

mighty, just use the vaporizor before you head in bro!

I never had issues in rx, I slept through it everytime.

Thanks for all the encouragement, everybody. I'll ask about having my own music...or a David Sedaris tape...and it sounds like Ativan might be the way to go, at least at the beginning.

If only I HAD a vaporizer...

They never showed me how to unbolt myself!!!

MM,

I stopped riding 1 month pre Tx because I was told by my RO I needed to gain as much weight as I could and obviously exercising defeats that goal. I did walk around the block a few times but that was really boring so I basically didn't exercise until I got back on my bike in my 4th month post and that was really tough mentally as well as physically.

Yes I also brought my own CD's because my rad tech liked country and that's all the CD's she had. Don't get me wrong I like all talented musical sources but after 3 days of country, I couldn't take that and the rad and the mask.

Funny story. My first day of rad they let my wife come into THE ROOM and when she saw them clamp me down she almost fainted and had to be helped out. She never again even ventured back from the waiting room.

Aahhh yes, the good ole MASK

Here's another vote for music, music Music! I found every 20 minute plus song I could (Iron Butterfly InAGaddaDaVida was in there).

KC

Chalk up another vote for music. I made my own CD during my 2nd bout of radiation, but in my first bout I sang hymns to myself. That was distracting enough because in addition to signing them, I was critiquing what a horrible singer I was. Before I knew it - time was over.

Is there any better sound in this world than the sound of the clips being undone? Sweet.

Keep your mind busy - whatever it takes.

Donna

chris

they had no music available for my 2007 sessions, just the whirling and clanking of the IMRT and I was not only bolted (not snapped but real bolts) down but also restrained with straps on my ankles and wrists. contrast that to the CyberKnife this year where they let me bring in my own CD: (I did new age instrumentals almost meditative). Even though the treatments lasted an hour this time instead of 15 minutes, they were much more comfortable. No bolts, just snaps, No tie downs, just a chest strap. I opted for the Ativan and it was the right decision. I fell asleep during two treatments, it was so relaxing. Plus I did have them make a mouth opening in my mask this time around so my lips were not squeezed with those criss cross marks from the webbing. Yeah, I figure that by the time I am eligible for Medicare, they may start covering the Volcano vaporizer with any luck. Seriously, take the Ativan.
charm

Okay...What is the vaporizer?

Man, you guys who had straps and ropes and stuff...now that's restriction! Who knows, maybe that's coming my way, too...

Ray, the vaporizer is for (medical) marijuana, legal in some states but not most of ours... It's a non-smoke way to take it in. Interesting concept; I hear they're going to have one on the Island, along with pina coladas...

Gonna make my own CD -- you've all persuaded me that's the way to go. Of course, I'll have to get my son to burn it for me, since I'm technically challenged. Old fart at 46.

Valium and a couple of Windham Hill new age CD's. I panicked twice and had to be pulled out. As soon as I even thought I was having trouble breathing it was zero to panic in no time. That was in the early going, after week 2 I was OK.

Yeah, I'm pretty worried about thinking too much about breathing...hence the desire for 1) Valium/Ativan/vaporizer and 2) music to distract. They didn't make a nose hole for me and I have a block in my mouth, so it ain't pretty...

There were many days towards the end that I would stop in the BR before and see if I had to upchuck and even then there were some close calls in the rad room but I never did toss them there.

I didn't have a nose hole either but it didn't seem to matter. After your first radiation treatment it won't seem like such a big deal. Don't get yourself all lathered up over it - we've all gone through and survived. Breathings easy - just don't hold your breath ;-)

Until I shrank I looked like I had been hit in the face with a badminton racket but the impressions only lasted maybe a half an hour.

Yeah, I'm imagining it's kind of like having "massage face" when you come out of a massage, but worse (funnier?)(scarier?).

Love the "hit in the face with a bsdminton racquet" description. I always thought I looked wonderful to anyone who was really into graphs and grids!

Donna

I colorized a photo of myself green just after I got my mask and I look like the "Creature From the Blue Lagoon". It's on my facebook... Look in the "My Cancer Adventure" photo album.

That was the Black Lagoon. I saw that when I was 6 years old and I had to leave the movie and go into the concession area many many times as I was soooo scared. To this day I remember that movie experience just like it was yesterday.

That movie and Old Yeller when I was 9. The 2 most traumatic movies in my life.

Isn't it odd that we can remember vast details about some events occurring many years ago yet I forget to get something my wife asked to pick up all the time?

[quote=Pandora99]Is there any better sound in this world than the sound of the clips being undone?
Donna [/quote]

Yes, the clips being undone on your LAST treatment!!!

Amen to that Kevin!
Only one problem, your to sick to care by that point!
Amy

David I should have known that I have the collectors series in my "B" sci-fi movie collection.

I think the Blue Lagoon movie was with Brook Shields...

I just layed there and let my imagination do stories I would make up as I waited. I should have wrote some down. I had some interesting tales going thru this empty sphere they call a head. LOL

Chris,

Well my wife read this to me while I resting on the couch and sure enough she got me up. During the initial mask fitting they ran the machine through several cycles , calibrating I guess, which took an eternity. Finally on the third try they got what they needed but then the machines software couldn't communicate with the hardware. After they messed around for awhile they decided they had to shut down and reboot, should have had a Mac, and this corrected the problem. Meanwhile I went from calm to panic, it must have been 30 minutes complete isolation, and I started flailing my arms around. They came in and the human contact calmed me down. I was a freaking mess. I was able to complete the procedure but barely.

Good news, they will cut the eyes out of the mask for you so you can look around which is better than having a plastic sheet over your head. I made my own music disc so I can have familiar music during treatment.

I told my doctor afterwords that nowhere in this world is there a treatment that incorporated the archaic and the arcane more than this machine. It's all state of the art, firing photons and gammas rays and things that few can comprehend, yet they bolt you down to a board with a mask like some type of mid evil torture. It gets easier! Twelve down for me and twenty one to go. Hang in there.

Jeff

You're right about the medieval torture! It's seems bizarrely to be from another time, this mask...but it sounds like you're doing alright with yours now. It seems the fitting is probably the worst of all the sessions you have to endure...so I feel hopeful that the treatments themselves will be comparatively bearable. I will be taking my own music in, for sure. And I do hope for some eye holes.

Good luck with the rest of your treatments! May those photons and gamma rays go straight to where they're needed!

When I had my radiation and mask, and was bolted down when I went through the machine (20 minutes), I closed my eyes tightly and never openened them, even to peek, the entire time. I then put my mind ELSEWHERE, and hummed songs; mine were usually Christmas carols. When I first started my radiation, I counted while in the machine, but that didn't work. So, try humming a song

a David Sedaris tape! that won't work; you'll be laughing too much!

John once had to be unscrewed from the table b/c he was going to vomit; he sat for about an hour but still felt too nauseated to do the tx so was sent home (which means a tx tacked on the end I guess). This was even w/his nausea meds (zofran, reglan, ativan), but he feels the Ativan helps a bit overall with both nausea and then the anxiety of possibly having another episode like that one, etc. He's joked about putting his mask in the local EPA Superfund site "where it belongs" once he's done with it. A relative of a co-worker had cancer tx involving a mask some years ago, and his wife uses it to hang her earrings now...

Music, meditation, and prayer. Anyone can get through it as it's a step towards getting better. I remember my first treatment, strapped in and placed into the chamber and BAM, I freaked (Even after all the self convincing that it wasn't going to be an issue). They were there and had me out in a split second. A little water and refocus and then it wasn't so bad. I found a little area that I could point one eye towards the corner of the nose area in the mask and I could see some light when I needed to focus. As I lost weight I had to have another mask made so I have two for halloween decor. They look cool under a black light. LOL!! Yes, a sense of humor always helps a lot.
Best Wishes,
Steve

Thanks, all, for words of encouragement and good humor. I'll be starting in a little over a week (I think), and feel well-armed with strategies for dealing with this! Drugs, music, meditation -- it'll be like the sixties. And for afterward: Halloween, Chia pet, earring tree, who knows? So many possibilities...

I highly recommend David Sedaris if you want a good laugh. Maybe not under the mask, though, you're probably right, mg...

Why complain about something that is needed for treatment and healing. Sure it might be uncomfortable but is necessary. Grin and bear it and things will improve daily.I had the mask like we all did but could grin and have a lugh going in and coming out. Use mind comtro; and you will win.. I have a slightly used mask for sale?? LOL

I was told that the initial mask fitting was the longest or toughest part of getting used to the mask. I had my mask made a couple days ago and it was very trying to say the least. It was nothing like having to put on a gas mask in Iraq, much worst. Ironically, both masks were both there to help save my life. I didn't think to look through the forums for information before hand.

Maybe, someone could hold a mask fitting training class. After all, knowing is half the battle right.

The worst part for me was the tube that I have to have in my mouth to hold my tongue in place. Anyone else have this? Makes my throat and mouth really dry. And yes I did the deep breathing through my nose as best I could.

Yes, Kenny, I have a block in my mouth to hold my mouth open and tongue down! Mine was trembling most of the time they were doing the mold (I guess my whole mouth was shaking a little -- it's hard to get it to open after my surgery). And yep, you have to breathe through your nose...and I thought it made it hard to swallow, too...

But we'll get through this! Count in two, out three...makes the time flow by...

When I had the treatment with the mask I had a sports type mouth guard in to keep my mouth closed, I had two grab handles postioned for me to grab hold of and my knees were bent and a rubber band used to keep them in place during treatment, then the Tecs Xrayed my head and neck before they started the damn machine to make sure that I was in a perfect position! It took all the Marine Corps decipline that I could muster to get thru the 20 minute treatment. Good luck and best wishes. Semper-Fi Bob

MightyMouse my daughter Brandy had the same diagnosis of SCC in the maxillary region and just finished her 6 week checkups after completing her 35 treatments on May 15, 2009. You need to be prepared as the treatments for you are somewhat different then a lot of the folks here as they target the roof of your mouth. So your facial area as well as your neck if they are targeting all your lymph nodes too will be affected and possibly have more burns in the face area too. Just to be prepared.

Bonnie

Bonnie -

Thanks for the heads up -- this is an unusual place to be targeting, the roof of the mouth. I finally have a start date: July 13, doing 30 treatments, concurrently with some chemo (Taxol and Carboplatin, once a week for six weeks). The RO has told me of possible side effects of the radiation -- fatigue, "sunburn" on my face, jaw tightening, that's about it. Luckily, they are not doing my nodes. I'm kind of nervous, but also ready to get going on this!

I'm glad to hear your daughter is done with her treatments and hope her 6-week checkup went well!