Well, dear friends, I guess I wasn't emotionally prepared for a radiation treatment! Maybe I'm just tooooo sensitive/emotional, but boy, when they put that mask on Tom, I nearly lost it! I didn't get hysterical or anywhere near dramatic, but I certainly had tears pouring down my face!
He seemed perfectly calm - - - how does ANYONE make it through those sessions without wanting to scream? I'll admit to being claustrophobic, but wouldn't anyone get that sensation with the mask?
Anyway, I survived - as did he! The good news is that the radiation doc said he felt the chemo has done about an 80% job of getting this thing on the run, and that the tumor should respond very well to the radiation

It is late, but I wanted to record this 'sensation'........
(Tom refused to take the last day's worth of Xeloda today because his skin is red and fiery........I couldn't get a response from my call to the chemo nurse to find out if he'll be OK with missing those doses...
Night all..
Nicki

Oh Nicki, bless ya'lls hearts. You have only just begun. As for that mask, well how else can one put it, you do what you have to do. I don't think there is a soul that enjoyed that part of radaition. Well any part of it now that I think about it. I have been praying for ya'll. You need to take care of you too, don't forget that..For now I will say good-bye and a prayer for ya'll. Always Miss Vicki

Nicki,

With all that I've read on this site about the offensive masks, I guess I'm glad that in the "old days" when I had radiation they weren't using masks. It was certainly bad enough without them.

Please be sure Tom stays focused on nutrition -- it's a real challenge as radiation goes along, but it's also a critical part of getting well again.

Cathy

Nicki,

I guess I was lucky. No one ever asked if I wanted to go in with Heather when she had her RAD. I stayed in the waiting room most of the time, so I never saw her with the mask on. I did see the mask after her treatments were done, though and it's probably a good thing that I never saw her with it on.

As for the Xeloda, I don't know if skipping the last dose is a big deal or not. I can tell you that we were told up front that Xeloda could cause skin problems. I think I remember you mentioning that Tom has had some problems with red and splotchy skin. The Xeloda causes dehydration, which in turn causes the skin problems. The chemo nurses recommended using either Udderly Smooth or Bag Balm. We used Udderly Smooth....just rubbed it in several times a day. They said the palms of the hands and soles of the feet usually are affected the most, so we concentrated on keeping those areas well moistened with the cream.

I believe you also mentioned that Tom has had some tingling in his toes and fingers? I found the booklet we were given when Heather started on Xeloda. It calls this condition hand-and-foot syndrome and says to let your doctor know ASAP if you experience it. It usually starts with numbness, tingling, redness and swelling. It can progress to painful swelling and redness and can sometimes cause blistering and peeling of the skin. However, when caught early, it is easily treated. I certainly would let the docs know about the tingling/numbness before Tom starts the next round of Xeloda.

Rainbows & hugs,
Rosie

Like Vicki said, you just do what you gotta do! For me I listened to music fairly loud, didn't really matter much what. It made the time go quickly most of the time. The first week we tried Amofostine, which did not go well at all. I threw up 2 different times that week during radiation! You've never seen rad techs move so fast to get that mask off & my face in a bucket!! They really cared & probably weren't all that excited about the thought of a puke sprinkler in the rad room!! HaHa!! Tell Tom he can do it!

Hey Nicki,
You guys surely are in my prayers. Dan had 7 chemo treatments and 41 rads. I hope you guys decided on the PEG...Dan could not have made it w/o it. He ate and did well until 3 weeks in, and then overnite it happened...he could not eat a thing or even drink water. That day and for 5 months he took nutrition only thru the PEG, nothing by mouth. It was a rough haul, but Dan got the max rad to four places and it was full field, not IMRT (which probably made it worse). With pain meds, make sure you ask the docs for some strong meds for constipation. Dan really had a few days of horrible constipation that we had a hard time getting under control. Docs didn't mention it beforehand, so make sure you ask and get ready for that! Anyway, hang in there and keep praying...it's what got us thru along with some very loving friends!
Deb

Nicki, all totaled I guess I went through about 110 of those lovely sessions under the mask, counting both occurances. Hate to say it, but one just kind of gets used to it after a while. I either slept or tried to think up orchestrations to the sound the IMRT colimiter leaves were making a they did their thing.

I'm one of those that did this without the PEG, not a big deal the second time around since they only did my neck and I didn't have much pain except for a slightly sore throat for a couple of weeks, but first time around I wound up in the hospital the last week getting fed through IV as they were nuking my tongue as well as neck.

Suggest if they are going anywhere near his mouth he do the PEG, but try and wean himself off as soon as possible.

Good luck to you both, You will find that time passes, things will get better.
Bob

Nicki, I think this is one of the areas where it is worse to be the caregiver than the patient. I am not claustrophobic, so had no problem with the mask, and like everything else, after one does something a couple of times, it gets to be routine. I, too, slept a lot and many times the techs had to wake me up. If for some reason I had to choose to have surgery, rad, or chemo again, I would choose rad because it was by far the easiest. You and Tom will get though this just fine.

Hi Nicki

Soon you'll be writing 34 down, 1 to go!

I didn't mind the mask either. It may look frightening but wasn't painful. I saw it as a positive tool in my treatment. Used my mind to visualise a clean healthy throat while the ray was on and to take me away in between times.

I suspect your day may have been harder for you than your husband. Think of all the malignant cells which are now history.

Best wishes to you both for successful treatment, with love from Helen

Nicki,
Like Bob, I slept through a lot of my treatments. As I lost weight the mask loosened up a little. It was pretty tight at first. I did fear getting sick in the mask but it never happened. It really wasn't a big deal. I WANTED to make sure that they accurately hit the target and the mask guarantees that.

Hello Nicki,

The first steps on any journey are the most frightening. Don't let the mask on Tom bother you one bit. That mask is critical in the use of radiation treatment. My treatments were only 15 minutes long. The machine never broke, no delays at all. I had IMRT radiation and luckely had no side effects from the rad at all. I tossed my mask in the garbage today. It was sitting on a shelf in the basement. Why would I save that!!!!

One important thing for both of you to remember is to input enough nutrients to both maintain and heal. Talk to a nutrrisinist to find that out.
Another thing to remember is a general rule of thumb is one month of recovery for every one week of radiation. When the radiation ends alot of us became depressed. All of a sudden your all alone. There are no more treatments except follow up scans. Just beware this could happen to Tom. Most of us are on anti-depressants. Alot of it has to do with quality of life issues. Different for everyone but a reality to.

Remember to ask anything you want to, someone will answer. You are a valued member of this forum and I know I and many others are pulling for Tom to beat this bastard of a diaease. He is lucky to have you as his primary caregiver. Your love and caring shine through in your postings.

My wife told me something when I started all this a little over a year ago. I thought you might like it. Remember, "This To Shall pass"

Love Ya, Your Friend, Danny Boy

The mask is a state of mind. I was quite uneasy with it and found my self hyperventilating with it. I calmed my self down before going in and thought the most pleasant thoughts while it was on with my eyes closed. That seemed to make the time pass and go easier. I was in it for 25 minutes each time because of IMRT.

Dear Nicki,

On a follow up to my last posting I wanted to share with you my experience with this forum. Tom and I are almost 1 year apart in dx. I was lucky to find this website prior to my treatment and was stunned to know I wasn't alone.
Some of the older posters like Gary, Mark, Mandi,
Karenng, Rosie, JetageHobo (Bob), Dee & Packer, Helen, Judy, Dianh, Christine, and so many others were there to answer any question I had. They gave me advice on what to expect as well as love and support. It meant the world to me and still does. You can't find better information on Oral Cancer than you can on this site.

We are talking people from all over the world.
This forum has had a huge impact on not only it's over 1500 members but I know Brian receives
millions of hits here monthly.
I was vere tentative at first not knowing anyone, not knowing what to ask but as time went on I felt like part of a huge international family.
Soon I was the one that could offer advice and my experiences with different treatments. I was able to help someone else. Offer comfort and Prayer. That I hope will happen to you also.

I have a new life and at times it ain't so hot but I will always have a home here.

Who better to ask than someone who has traveled the path ahead of you? I've rambled on enough for a hayseed from Wisconsin, Everyone who knows me as you can tell I'm feeling better regardless
of my dx. I am Here!!!

Love Ya All, Danny Boy

You are so sweet, Danny Boy...here's a big cyber-hug! (((((((((((Dan))))))))))))



Christine

Nicky,

I will never forget that as long as I live.
The first time they strapped that mask on me and gave me radiation I cried out loud and actually made them stop. They had to give me a seditive to calm me down. I did get used to it after a while but its kinda like when you first lose your hair. The stark reality that you have cancer is upon you and there is nothing you can do about it.
Good luck, god bless, & FIGHT FIGHT FIGHT.
Robert

Nicki,

I am so sorry you had to see Tom in the mask. I didn't think much about it but I did not want my wife to see me that way. I saw a photograph and it made me look much more helpless than I really was (at that point at least ). My only fear was when I was feeling queasy and worrying about about puking in the mask or choking on this horrible thick brown goo that develops in the throat towards the end of radiation. I never did and all that worrying was for nothing. I made the techs promise they would listen extra carefully for any gagging and rush in to help me. They were just great about it.

By the time you read this...33 left! I am on the finish line, cheering you both on.

Ed

God love you all! I did much better today! It was a busy day, and driving 1 1/2 hours in driving rain was no fun - - I was glad it was only off-and-on rain for the drive home.
Tom had a hearing test to start the afternoon, then lab work, and then radiation. The doctor informed us that they found another tumor on the left side - - set me back, but, as he says, they'll get it as well. He and the chemo doctor are pow-wowing on whether to do the third round of chemo next week....
Very strangely, if I understood correctly, I felt the doctor was saying if the DON'T do the chemo concurrently with the radiation, Tom won't need the PEG. I'm standing firm, however, that he has one. I know that his weight, as much as any pain he'll endure, will keep me in a high state of anxiety. He was up to 144 today - that up 6 pounds since Saturday

HAS ANYONE USED ANY OF THE LINDI SKIN PRODUCTS?

OOPS. I hit the wrong key ...
Anyway, I have just gotten samples of LINDI SKIN products. On is called a "skin cooler." The literature says, "Esp. beneficial to ultra sensitive or compromised skin resulting from ratiation or chemotherapy treatments...For radiation sites, skin coolers are extremely beneficial in alleviating burns by soothing and hydrating the affected site. Cools on contact."
I will definately let you all know how they work in this household!

Danny - actually, Tom's diagnostic biopsy was performed exactly one year from your dx date....(and at I consider YOU one of the "older posters! )

Did you ever get the photo I sent to you? I'm so sorry I won't be able to meet everyone in Vegas. How many are expected?

Rosie, thanks for addressing the Xeloda issue. We have an information sheet on the side effects, which is why Tom decided NOT to take the last 3 doses. I finally caught up with the chemo nurse, and she agreed that he was right in discontinuing. We'll review everything next week before (IF) they do the third round.

I am really in awe of you and other surviving caregivers who continue to post on this site in order to help others. You are real-life heros.

Nicki

Nicki and Tom -- 2 down, 33 to go!!

YOu guys sound a lot like us -- we were 1:30 from our treatment center so we had to do a lot of driving initially. I can't remember if I've mentioned this before but check with your local chapters of the American Cancer Society. They provided FREE lodging for Pam and I during both rounds of my radiation treatment. All told, I used about 10 weeks worth of hotel rooms at no cost to me (except for renting the occasional fridge and meals, etc.) It might be easier as the radiation gets tougher not to drive so much. Especially on chemo weeks, all i wanted to do was go back to the hotel and be still. The driving would have killed me then...

As for my mask experience, the very first day they had me in there doing films, I felt very claustrophobic and even yelled "help!" at one point (which got muffled because of the bite block on my tongue). It got easier and easier over time, and the second time I had radiation it was pretty much no problem (except for fears that I was moving/sliding around in subtle ways and that the radiation was missing the intended targets).

As others said, you do what you've got to do... I think that's the most amazing part about the human psyche. I'm pretty much a fraidy-cat when it comes to pain but I've amazed even myself by what I've endured. On the day they did the very first biopsy I was scared SICK about the fact they were going to put me out for 10 minutes to do a little snipping. Now, it's like "Boy, would I dream to have such a little procedure done" compared to chemo, CT-guided needle biopsies, neck dissections, etc.

Keep up the good work!!! Be safe and be well...

Eric

Yes Nicki I received your photo. Thank you for sending it. It printed out real nice. Sending
some powerfull good vibes Tom's way.

Love Ya, Danny Boy

Hi Nikki,
Each time will get easier. I kept a calender on my fridge and marked off each day. My radiation was at 10am each morning and it was the highlight of my day to come home and put that X on that day! I still have that calender in a scrapbook on my dresser. The simulation for me was by far the most horrific experience for me out of the entire treatment. I was enormously unprepared for what they did to me. I am very stoic so didn't say a word to anyone until I got in the car and talked to my daughter about it. I hated that mask more then I could ever express in words. When they tried to bring it out to me on my last day I stopped them. I had my whole family there with me and there was NO way my kids were going to see that horrifying thing. For as long as I live I will never forget that first experience of the mask. I remember thinking I was going to have a heart attack and the only thing that got me through was to count, just simple counting. I did get to the point where I wasn't upset by having it put on. The techs were experienced enough to recognize that I was apprehensive even though I didn't speak up about it.
Keep pushing for the PEG. I was begging my doc to take it out the week prior to radiation, I was eating well and didn't think I would need it. Thank God that my doc had common sense and left it, or I would have been BEGGING them to put it in around the 4th week of radiation.
Take care!
PS. how far are you from Va. Beach??

Hi, minniea!
I was busy tonight reading old posts (I am learning so much by doing that 'research!') and found one from you that says you have 7 daughters!! How awesome! Tom and I have 3 children, but how wonderful it would have been to have been blessed with more. We do have 2 grandchildren already, so that is wonderful!

Today, Tom wanted me to take a picture of him while in the mask. Made ME nauseous, and I could only snap one. He's nonchalant about the process, but he knows it bothers me....

We didn't get to see the doc today; hopefully tomorrow....I am anxious to get this PEG issue settled. As far as I'm concerned, he WILL have it.

We live about 4 hours from VA Beach...my sister lives in Chesapeake, so we get down there from time to time. We LOVE staying at The Seahawk hotel on the beach...it has been awhile, however, and we'll have to see about getting back down there.
Will you be in Vegas?

Hi Nikki,
Yes, seven of them, all as different as the next. They are Charity 24, Amy 22, Meg 20, Kelly 18, Mercedes 14, Skylar 12, and Sammy 10. We also have two grandaughters Kayla 6 and Shelby 5 with the third on the way (looks like the name will be Alexandria "Lexie" for short) and she will be here the end of October. I am so very excited about having a baby around again, we are certainly a baby loving family!
I live right on the city line between Va. Beach and Chesapeake. My girls attend a small private Christian school that is actually in Chesapeake yet I can see the school from my house. We have been looking for land in Chesapeake for over a year now but not having much luck. I dream of somewhere that I can feel some freedom rather then looking out my window and see my neighbors house. I want some horses for the kids and lots of land so that each of them can build a house right close to me! They all live right here in Va. Beach now which I am so thankful for, four still in the house with us and the other three less then two miles from us. Amy went to University of Maine for her first two years but transferred to a school here when I was diagnosed. She always jokes me that I didn't have to go to such lengths to get her to come home, lol. It was an empty feeling for all of us when she was gone.
I'm glad to hear that Tom is getting through the radiation with a good attitude, it will serve him well later down the road. My husband came to one radiation treatment with me, my last one. He just couldn't handle it so my daughter, Amy, always took me. I couldn't imagine having to watch someone I loved having that mask put on. I say a prayer many times a week that it is not one of my children suffering this. I can handle it for myself but could NEVER handle it for one of them. I have always said that if this disease gets me then I have the easy job which is to die and then go to my reward. My husband and children will be left here, without me, to work through the emotions of it all. Guess it's a good thing that I plan on living around 40 more years or so!
Take care Nikki and when you get to Chesapeake again let me know.
Minnie