I know this has been discussed. I have read the post. BUT I JUST HAD A PANIC ATTACK. Ct sims. Mask fitting. Call it what you want. I cried. I couldn't breathe. I couldn't think about something else, because I couldn't think. I had to go home. Rescheduled for tomorrow morning. 1mg Lorazepam precribed. I didn't see anything to play music. I have to be able to do this, I really don't see as I have a choose. But I have no idea HOW I am going to be able to do it.
Can anyone help me?
Amy

I can totally empathize sympathize and understand what you are saying...I wish I had a magical solution to your problem as mine is the same...I am extremely fortunate at this point have not had to have radiation treatments but yet I know that I would react the same as you have...despite being told to take deep breaths or thinking about something else I give you credit for even deciding to go through with the treatments and now that you are more familiar with what is going to happen you may be a little more relaxed. I can immagine how intimidating being constricted would be. For music if you have an mp3 or anything like that they have small speakers that can attach...or a portable cd player can hook up to these portable speakers...or a boom box
The other thing that helps me is detatching myself from myself it sounds wierd but that is the only way I actually went through with my surgery the hour and a half trip to hospital...I would find one thing and just focus on it like something in the room or for me it was stone necklace (kinda spiritual)focused on the smoothness, the feel of it in my hands...Please let us know how you make out. I will keep you in my thoughts as I may need the same support some day and if there is something that works for you you have to know you are not alone and it may work for others as well...Take care sweetie and for tonight try a long hot bath some candles and soothing music...just try to relax...

Thinking of you

Dianne

Amy

Im so sorry you are going thru such a rough time. First stop for a second and close your eyes. Take a few slow deep breaths and try to slowly relax yourself from your toes to the top of your head.

It can be very scary doing the mask for radiation. I did it too. While I didnt have any panic attacks, I did experience the maks which can be difficult to deal with.

Ask the techs to play music for you. The techs are there to help you so let them guide you. If you need meds to be calm, its ok, dont feel badly about that. Everybody gets thru this a bit differently.

I used to close my eyes and pretend I was lying on a warm sunny quiet beach. I never even opened my eyes the whole time I did the 35 rad tx, not even once. I programmed myself to close my eyes when I layed down and not to open them until the mask was being lifted off. Soemtimes if I was nervous, I would count as high as I could go. There also was the music which helped too. Try to think of something that calms you and make use of it even if its only some wonderful memory of the past.

Good luck with this, you can do it

Amy, I definately know what you are talking about. I had the same thing happen to me. I am clostrophobic and I have panic attacks since I was a child. When they put that mask on me I kept fighting the panic attack and trying to fight it and by the 2nd day I was crying and couldn't stop. One thing is I am held down, the mask is so tight and the neck area chokes me as well. The radiologist told me to wait for a minute and talk to my oncologist. I told her I didn't know what he could do because I took a xanax before the treatment and it didn't help. He had them to cut the nose part off the mask and I could breathe a little easier. Now I am still fighting the clostrophobia and panic attacks but just that little bit did help some. I know I want to get better so I will fight this with all my might. Talk to your Doctor's and they will help you make it through. I have to stay in there 25 minutes and it does get tough, but it does get better. God bless you, Angel

Amy,

Where are you being treated? I go to Shands at UCF in Gainesville. If you read my first post, you'll see that I started out with a local ENT, but soon needed much more than he could offer. I'm not insurable (medically challenged one way or another all of my life) and also medically needy. I think that is why I was fortunate enough to be sent to Shands for the very best care. Who knows if an insurance co or HMO would have pulled out all the stops like the county and state did to save me.

I know it's scary, but you want this blasted (being clean here) thing dead and gone, so you'll get through it. I tended to think of it as a separate entity trying to take over and my fighting spirit kicked in and overpowered my fear.

Do you have anyone to go with you - family or friend? It might help. Actually, I'm stronger without the company. I tend to keep it together unless there's someone with me to catch the pieces. I do like the company for the drive to and from, though, and sometimes it hasn't been a good idea for me to drive the 6 hours round-trip.

Diane's "detaching myself from myself" is how I got through a lot of this, too. It helps with pain, also. My Gram used to say "This too shall pass". It also helps if the Doc and assistants know how you're feeling. They helped me a lot with their reassuring words and gentle kindness. You should be better tomorrow - you already know what to expect, and do take that med to help calm you. You'll do just fine. Get mad at the cancer and fight back. That fighting spirit leaves less room for the fear.

My very best to you,

Lani

Amy,

Just tell yourself that it's a must. It's not easy and nobody has a good time going through these txs. I can barely swallow and get enough calories but I'm trudging through this dark tunnel. You know why? It's a must. One step at a time, one tx at time, one problem at a time, one day at a time. You can do it because you have too. Try to think of all the the important things in your life and how you want more. Think about all the important people in your life, hopes, love, time and if it helps--God. One step at a time. You can do this...

Amy,

Talk to your docs and see what they can prescribe for you. Take your own boom box if you have to. Please try to relax and please find a way to do it as your life depends upon the radiation. There is no other way.

Amy, you can do it! I have told my doctors they should show you a video or give you some kind of brief about the procedure before taking you in and the next thing you know they're pressing that damn mask on you. I too never opened my eyes throughout the tx and would go in would an "agenda" in my mind e.g. thinking/playing a round of golf in my mind, reliving vacations at the beach, visiting with relatives from the past, working business deals, etc. Anything to relax and try and forget where the heck I was and what was going on around me. I had a poster chart and marked off each visit - a countdown from 34 which also helped. Your time will come to X out the final treatment . .. we feel your anxiety and wish you the best.

Hello Amy,
I recall my mom having the same issue as you. She panicked so bad that she made herself physically ill. They did prescribe ativan 1mg for her to get through it. In the beginning she was so frightened. She tried to tell me about getting the set-ups done and I couldn't imagine what she was saying, the next day I went and spoke with the techs and they let me see the table and her getting snapped in. I felt my own panic start to rise but I had to remain strong for her. This whole diesase is just awful and the tx's are mind boggling. I wasn't sure how to keep my composure...actually at first I had tears in my eyes that I hadn't realized were there. My mom looked over and said she was ok and I told her the truth that while I trusted the team, what she had to go through broke my heart. I left the room where she was and they let me stay in the "tech room"....for lack of a better word. I watched her whole 15 minute tx. They did have music that they piped in for her, can't recall what it was but it seemed to ease her. She was so brave, and did it 30 more times after that day and then a few weeks after she had brachy therapy. In the beginnning she made it through her Erbitux tx's. She is an amazing woman, very strong. She later todl me it helped her to have someone see her in there and to know what she was facing. I know it helped me and we could talk about her fears and I could semi understand what she was saying. Maybe you have a CG who can go and see what it is all about? I'll be honest with you, it's not easy seeing someone you love snapped down to a table with a wicked halloween mask over the head adn shoulders. If it weren't for these treatments, I know for certain that my mom would not be with us today. She is extremely claustrophobic. No matter how cold she can get hs ecan't weara coat in the car because it is too cumbersome. She's a little lady so it isn't for lack of room.
I know you can do this, if you need to PM me and I will give you her phone number and she could tell you her experience and how she made it through. Honestly, I think she prayed a lot. You are not alone, there are many here at your OCF family holding your hand and your heart.
Donna

Lani, you asked were I am being treated. I am on the otherside of the panhandle from you near Pensacola. I may have to go to Shands for my bilateral neck dissection. No one around here that is qualified will do it for what Medicaid pays them. My ENT is talking to an ENT oncologist in Pensacola to see if he might take on my case. Just cause he's a good guy. The last I heard he was up for it. I have meet him and have another appt with him in Nov. Very nice doc. The kind that takes time to talk to you. Not at you!
Donna, thanks for telling me about your mother. I will try and remember that she was able to do it tomorrow. Maybe someone can talk to me through the speaker. I did feel better with someone in the room.
Bill you are right a video might have helped. A video would show those doc and tech who is going to need special help and extra time. And I would have already had the happy pills so I wouldn't have wasted a morning for everyone involved!
I am scared of everything that I am going threw, but this was something else. As I told the tech I will just have to Man Up and do it. I just don't know how I will. My life depends on it. I know that! I believe that the more I do it that the more comfortable I will become, but BOY.
Anyone know of someone that couldn't make the radiation tx because of the dreaded mask? I wonder if there has ever been a person that called off the cancer treatment completely because of fear of the MASK. (I'm coming up with a better nick name for it, will let you know)
Amy

Amy. My husband always hated anything on or around his face. When it came time for the radiation and the mask I was so worried that he wouldn't be able to handle it. It wasn't easy, but he did it. He was so frightened having cancer, that he would do anything to wipe out this hideous disease. It was tough, but if he got thru it, so can you. Just think of it as "this may be saving my life". When you start, count down the days and you will be surprised how fast they go. Jim gets his 2nd CTscan tomorrow. I called the nurse at oncology and told her to tell the doctor that if the report is bad, not to tell him unless he asks. When the brutal doctor told him that he had less that a year to live, he started to withdrawal and now we have the recurrence on his jaw. I have my days, but I try so hard to be positive. I am praying for a miracle. Good luck to you Amy---I'll be thinking and praying for you. Lots of love, Claudia

I can relate to anxiety and panic attacks. I was on Zanax the entire time I was in treatment.

Amy,

There are Shands Hospitals in both Gainesville and Jacksonville. My RO's wife, also an RO, is based in Jax. Being able to be treated at Shands is what saved my life. I was referred to the clinical research and teaching teams for head and neck cancer and Medicaid never questioned a single thing - not tests, procedures, costs, nothing. I imagine that the costs billed to them were probably less than they may have been by a private Doc because of the very nature of the department, but I never saw a bill or was asked anything at all about payment. They took care of everything (especially me).

While I was receiving rad & chemo in Gainesville, I stayed free of charge at Hope Lodge, which is run by the American Cancer Society for out-of-towners in treatment. I really had nothing else at all to worry about, leaving me free to focus on fighting and beating this horrible "thing" inside of me - and I had a heck of an army behind me. This is just my opinion, but I would say that if you have the opportunity to go to Shands, take it!

By the way, my #2 son is career Navy and he just got transferred to Pensacola. He'll be there Nov 2nd for the closing of the house he's buying there. I can't wait. This is the closest he's been in the 16 years since he joined.

Take care and be strong. I know you can do it.

Lani

Ditto what everyone else said, Amy. You CAN get through this. Get a prescription for some pills to relax you and then once you get into the room, keep your eyes CLOSED and forcus your mind on a mental image of someplace that you love to be. Somewhere with peace and calm. I used to picture myself in the forest. Light playing at the tops of the trees while I walk in the quiet shadows of the undergrowth. You can hear the leaves growing. Hold the picture of that spot in your mind. Smell the cedar. Before you know it - the treatment will be over.

Donna

Hi got up early cause was thinking of you today and wanted to wish you all the best today and encourage you...YOU can do this and you will come out stronger cause you did...Find your safe place and stay there till you know its over...Take care and be strong

Dianne

Amy,

Please get another opinion before you have a neck dissection, especially on both sides. I had 5 opinions and Moffitt, a CCC, told me that I would not need a ND due to the size of my nodes (2 but both less than 2 cm) and that the radiation would most likely kill all the cancer. They also said that I could always have it dealt with post Tx, if needed but they didn't think I would have to and so far so good. Unnecessary surgery is never good.

further surgery would be post TX. My nodes are R 3.5cm and 4cm
adv by my second first opinion said it would most likely not take care of the bigger one. The second opinion says that both need to come out, regardless. Since the second opinion is a head and neck oncologist I am most apt to listen to him.

I am tying not to panic. I just have to do it to get better. There is no other option.
Thanks everyone.

That's great that you are hearing from more than one doctor and lets hope that the radiation does the trick and you can avoid the ND's.

Amy, you undoubtedly are an intelligent person and you know what has to be done so just go with the flow and take the clamping as a challenge. YOU CAN DO IT!! Did they have the Little Red Train story when you were in the first grade? That Little Red Train has helped me more than once in my life.

Ladies and Gentlemen. I am back home.
Because I DID IT! Radiation and Chemo to start one week from today!

Amy,

I knew you could and would!!! Keep up that fighting spirit! (But now you can go take a nap, if you want. )

Lani

Super Amy,

You are finding that you have more strength than you possibly know and you can conquer this because you know it is what you have to do.

Congrats...now keep fighting, Deb

Way to go!!!! Huge accomplishment be proud and yeah you deserve to reward yourself with whatever makes you happiest.....I/we all are soooo proud...so what's the secret? I would really like to know?!!!

Good for you Amy!

The secert was. I took 1mg Ativan and the techs already had the eyes and the nose cut out of the mask when I got there. I laid there with my eye closed and never once panicked. Breathed easy the whole time. The techs also took me next door to get a good look at the room that the radiation is done.

Amy, Way to go! Angel

Amy,

I saw in your profile that you enjoy gardening, and you live in Florida. Me too, and me too. When I'm really tense, afraid, sad, or any other not so great emotion, I find it calming and "real" to get out into the dirt. Even when I'm not physically strong, I can still sit and pull weeds or fuss around my plants and shrubs. It's very therapeutic for me and helps me put things into perspective. The weather is usually cooperative and there's always something that you can find to do.

Just a thought,

Lani

Amy, rather than have a lone ENT deal with it, were I you I'd be talking to Shands.

The cancer centers bring a lot more to your case than a lone practitioner -- Besides surgical followup, they bring both medical and radiological oncologists (which in this case you already have), dieticians, swallowing/speech therapists, lymphedema therapists, etc., plus your case is reviewed by a Tumor Board consisting of a number of experts, not just one person's opinions.

Finally, and very importantly, they will have seen a far larger number of oral cancer cases than a lone practitioner!

Pete
Thats a great idea! for someone else. For my life it will not work. I live hundreds of miles from Shands. I have four children that need as much of there life to remain normal as possible. I have a husband, he has a job. I would like him to have it when this is all over. I have 2 ENTs one is a "lone practitioner" that refered me to the Head and Neck Cancer guy. While I live in the woods, I do have access to the medical community, sometimes they are just not in the same building, that's all. My Dr.s and nurse's have given me their personal cell numbers, I'm not a big town girl but I don't think you get that in Gainsville or Jax.

Very good job Amy !!!!

I knew you had it in you, keep up the good work.

Amy,

You must be incredibly proud of yourself. Dealing with the diagnosis is stressful in and of it's self, but conquering the fear of the mask on top of it well that's extraordinary. You go!!!

Susan

Way to go Amy! I knew you could do it!
Donna

good job Amy!

Amy, I just wanted to add my congrats to the posts and tell you it does get better!

The mask was especially daunting for me too.

A couple quick points I wanted to throw out there.

1) You mentioned you "Don't have a choice" about getting the treatment.

Sometimes, I think we humans react with the most panic when choice seems to be removed from the menu.

That powerless, hopeless, helpless feeling can be more paralyzing that a Wall Street meltdown.

I found that when I remembered I DO have choices and that I was making them as intelligently as possible, it usually helped.

You know that the scary statistics about this disease include a fair number of people that choose to do NOTHING.

And, there are about 4 million choices between nothing and doing what you are doing, not the least of which is making the choice to get through the treatment.

2) Pretty soon the challenges of the treatment will move to the forefront. I remember wondering at the beginning how I could possibly get by emotionally everyday, laying on that hard, cold, table for what seemed like hours, with some sci-fi waffle mask on my face, not being able to move. Good news- The radiation kicks you in the butt so much soon, that you'll be concentrating on the best distraction there is. Survival.

3) Concentrate on how you are going to decorate (or torture) that mask when you are done. This probably doesn't work for everyone, but I remember having some comfort in the imagination of how I was going to decorate the mask (they'll give it to you after tx usually). It sounds silly, but that's the point. Find silly things to think about so that your body & spirit can deal with the serious challenges you are going through.

sorry for the ramblings...I haven't had my 2nd caffe latte so this may make NO SENSE whatsoever :-P
Embrace it.

Hope today went well again for you.

Today was a nothing day. I had nothing to do so I sat around and felt sorry for myself. Until someone gave me a little kick.
I don't start my treatments until the 28th.

OHHH....sorry about that. Thought you had started rad and wanted to check how you did with the mask. Was hoping you were doing good.

Its an easy trap to get into feeling sorry for yourself. Every once in a while I do it too. I find that as time goes on and I think about how fortunate I am in life, the less I dwell on anything bad. Cancer has given me a different outlook on life. I havent had the 'why me' syndrome, mine was always whats next, lets fix it.

If you dont start tx til the 28th you probably have alot of free time on your hands and that can let your mind wander. Remember, you have your OCF family to cheer you up, we are right here to help guide you thru this.

I find that I don't feel very sorry for myself because I am looking at how things will be in the future, not how things were in the past -- I am just in a new stage in life, as I was at many points in the past -- Limitations existed in many of my 'past lives' and I just get used to them -- Beats heck out of the alternatives!

Too much free time. I sat around last night and thought about laying in that mask straped to the table, with laser beams cookin' away. I have a very active imagination. Very visual. I need to find something to do this week-end. Maybe a festival or something! I do have about a months worth of yard work. (Seems as though all the yard work stop on or about 9/23/08)
But I'm afraid if I do something physical, I am going to pull out this d**n Peg tube. Maybe extra tape? Any ideas? I would like to go running. I haven't asked anyone if I could/couldn't.

Amy,
I would go easy on the yard "work" with that Peg tube. Stick to the less physical cosmetic gardening like pulling weeds and pruning shrubs - preferably while sitting down or at least moving carefully. Leave the mowing, raking, & rock rolling to your husband and kids - or just leave it until you can get them to do it. But, as I said in a previous post, gardening is so therapeutic for those of us who enjoy it. Fingers in the dirt, helping beautiful things to grow, and the results are so rewarding. It really helps me "get to real" and comforts me.

When I got my Peg tube, my RO's office gave me a tube-shaped very flexable kind of stretchable netting that fit around my waist/tummy area and held the tube from flopping around. It helped a lot. A little extra tape to hold it should also help. Just don't do anything that puts a strain on those abdominal muscles - no heavy lifting, etc. I don't know about the running. That's something I've never done, but I would get someone's professional or at least experienced advice before I tried it.

How old are your 4 kids? Young enough for you to work on Halloween costumes and decorations? Maybe you guys could try a "game night" over the weekend. My Grandson has started it in his family and they all really love it. He and his sister are 11 and 7. If you like cooking, maybe you could plan and prepare a really great dinner this weekend - maybe try out some new recipes or just some old favorites that you don't make too often.

Just a few ideas, but if I haven't helped yet, let me know. I've got a million of them.

Lani

Amy I felt the exact same way before my surgery same reason...did exactly the same thing went to a fair went to the movies... sat around a camp fire and just had some laughs...I understand how difficult it can be ...If you are anything like me you over analyse and think constantly but you know yourself best..do what works to keep your mind occupied...Laughter does help..and for me was writing journaling and talking to people here who are supportive..If you need to talk there always seems to be someone here...

Don't do any running. A good brisk walk in the beautiful fall
air looking at the leaves and trees along the way. Find a good
place to hike and enjoy the view as well as getting rid of some
nervous energy.
I have a sled dog, and boy does he like to walk with me but I bet
I almost wore him out walking so much last fall. It helped so much!
It increases your seratonin, which helps keep back the depression that accompanies most of us at one point or another, increases your blood flow and is so good for your bones.
Maybe we should all start a dog walking business!!
Thinking of you!
Debbie

Good thinking Debbie. Maybe if I come to VA you will walk me. J/K I like to walk to but for right now I have to watch I don't overdo it. I had a Bassett that would run for his leash if I asked him if he wanted to take a walk. That dog understood a lot of things .

I have two very soiled dogs. The oldest is a huskey mix and she walks well. She also understands lots of things. The "baby" was a stray when we got him and he is still learning to walk on a lead. And will deside to pull me down the rode. I don't know what kind of dog he might be. We just call him "American" if someone asks!
The kids are all old! 23,22,19,14. I wish I had some little kids around here. I don't even have little kids neighbors to borrow.
I started running when I stopped smoking this spring. I started to put on too much weight. (wish I had it back now). I have just always been real physical and sweating kinda clears the mind. I'll have to find something to do, or I will just drive myself crazy!

Amy:

I have found that getting my yard ready for winter has helped me to feel much better about myself. I have ordered 2 cords of firewood and stacked it right along with my kids. I have rakes and cleaned out the shed and garage. It gives a sense of accomplishment and more energy. My house and yard went to heck for the past year and a half and it made me feel upset. My house is only a couple years old, I moved in and a few months later got sick. I never even had the time to properly unpack everything. Ive now cleaned out several closets and made alot of progress in getting things to how they should have been before I got sick.

Dont overdo it but its ok to still be active with having the PEG. It sure beats letting that imagination get the best of you.

Walking dogs is fun, but watch out if they pull you. My darn dog (the big rottweiler) took a flying leap off the porch with me holding the leash last summer. I broke my pinky finger. Just last week I had her out and she went after a chipmunk and she knocked me over. Probably a pretty funny sight seeing me rolling down the septic mound and into my garden.

Maybe you could get together your holiday decorations so they are handy. Or how about Christmas shopping now? You might not feel very well when it is time to do the shopoping later. How about cooking some big meals and freezing them for your family? Catching up with old friends. Making a list of people who to help you by driving you to tx or things like laundry, shopping, pharmacy runs, etc. Just a couple ideas.

Amy,

Well, I guess that kind of puts a damper on the family game night and Halloween costume ideas, but at least the "kids" are old enough to put to work on that yard work.

Dog walking hasn't been too much of an option for me, either. I also have a husky mix and he's fine to walk, but then there's my shepherd! When I got him as a pup I started to train him to the lead, but hurricanes, family crises, and finally my OC got in the way of his training. He's a lovable pup who would never deliberately hurt anyone, but he's also 120 lbs and full of energy! Even now, 2 years post Tx, I'm only 86 lbs. He loves and listens to me, but when he gets excited - which is all the time - it takes him a bit to even hear me. My son says he thinks the dog has ADHD.

Well, there's still the dinner idea if you don't hate cooking. Sometimes I do the whole holiday dinner thing "just cuz" - Turkey, roast beef, whatever with all the fixin's. I've said many times that it's got to be God's little joke - now that I have the time and interest and have become a fantastic cook, I can't eat any of it. I do have fun making it, though, and when I get teeth I'll be able to enjoy eating more of it.

Maybe you could get a start on your Christmas or other holiday lists. You could wander around the internet window shopping and mark down ideas for gifts. Maybe it could help you keep your mind busy for now. And maybe you could take that walk, either alone, or with just the one dog if you can sneak out without the other one getting too upset.

I really think that after Monday when you get your first treatment you won't feel quite so antsy because you will know what's happening each day. You just need to get through the next 2 days & nights. And remember there's usually someone on line here if you want to talk.

Take care,

Lani

Amy,
You should get used to the mask pretty quickly. I was sleeping through treatment about half way through. Make sure that they put the pillow under your legs and ask for a blanket if you are cold. They keep the treatment rooms well air conditioned as a rule. The mask will feel looser as you lose weight as well. They are typically a little tight in the beginning, probably taking that in mind. Also if the neck positioning device is backwards or for a different patient let them know immediately - that can make it very uncomfortable.

Another tip - make sure that YOUR name is on the treatment plan on the computer monitor.

I'm amazed that they don't have a stereo or boom box in the room. You can bring your own. Make a CD of your favorite tunes. That's what I did.

Amy,

I started out pretty thin to begin with and the table was so hard on my tailbone. They had a "donut" ready for me for each treatment to take the pressure off and make me comfortable. It made a world of difference.

And me too, Gary. I slept through most of the treatments after a while.

I hope I can sleep through all of this! Tomorrow is the day. I have turned into a very ugly human. I have bitten off the head of my poor husband. Only thing he ever did was love me. Throw a fit at Wal-mart. (Wal-mart always brings out the best in me). And if one more person tells me to be positive! ACK!!!

Amy,

I'm sorry. I thought you were starting today. I wouldn't expect you to sleep through tomorrow, but soon it won't seem like a big deal. It doesn't hurt or burn or anything like that while you're being "zapped". I spent the first 2 1/2 weeks wondering what the big deal was. "This is nothing."

Of course then the burning sensation started in my mouth, lips, and throat and - can't & wouldn't lie to you - it gets worse. But still the treatments themselves weren't a problem at all for me. Just the effects of them.

I won't tell you to be positive. (I kind of like my head right where it is, thank you very much. ) But I will tell you to hang in there and fight back hard against this horrible thing. When the effects of the radiation start to get bad, you'll be at a point where the end is in sight and you can count down what's left.

And remember that your husband does love you so he understands why you're not your sunny "lil ole self" right now. I'm sure, because he loves you, that he's also going through his own Hell because of this. Most men feel that their job is to "fix" everything for their loved ones. Well, he can't fix this, and that truth was very hard for my husband to deal with.

I went to Home Depot yeterday and bought some beautiful autumn-colored flowers to dress up my walkway for the season, so I'm off to do one of my favorite things - plant and fuss in the dirt. But I'll keep checking the site from time to time today, so if you want to "talk", I'll be here.

Lani

Like anything else, it will just take some time to get use to it so just be positive, Oh ooops!!!

AAAAHHHHHHHHHHH!!!!!!!!!!


LOL

See you're already getting use to that!! LOL

And my other favorite. Let me know if there is anything I can do for you. I totally realize that this is just something to say when there is nothing to be said. But could someone please come up with something original. I have a plan that the next time someone says that one to let them wash my dishes! HA!

Amy,

Ahh. You are new to this. I already have! And take the garbage out, and vacuum, and weed-eat the yard, and grocery shopping - now that was a good one.

Lani

LOL
That was a good one.

Amy,

It's a great tactic. Those who really mean it are glad to help you get your chores done. Those who didn't mean it never ask again.

Lani

I got ride of a MIL after having a kid that way. Told her where to find the sink. She never came back to the house again!

Amy,

When tomorrow? I hope it's not too early in the morning. Have you seen that cold front coming in? Daytona's going down to 45 tonight! Better wear your woolies.

Lani

8 am! I am going to FREEZE. It is already 45* here.
(I am sure some of the northerners are laughing at us)

I'm from PA and some parts of the state have SNOW FLURRIES in the forecast for tomorrow!! I'm not ready for that, but I never liked the winter.

Amy,

Well I'll be thinking about you - while curled up on the oouch with a steaming cup of hot chocolate.

I'm glad I got those plants in today, because it's only supposed to get up to 65 here tomorrow, and breezy. That's just too cold for me to be outside gardening - especially skinny as I am. I reach for a sweatshirt at 80!

Susan, this is at or near record cold for here at this time of year. And snow flurrie up there already? The squirrels' tails are pretty fluffy, too. All global warming aside, this might be a pretty cold winter. Thank goodness our cold snaps only last a few days at most, or I'd never come outside until Spring.

Lani

You poor Florida gals!!!!

Here its snowing like crazy right now.


I think I want to trade you

Amy,
Thinking of you this morning, I hope all goes easy today.

Wait until you are finished Tx, everyone will constantly ask you "how are you feeling?" I still get asked that agonizing question by everyone that hasn't seen me in like 3 weeks and I'm over 2 years out!!

Christine,

Yup, You Betcha! This is the place for me. Growing up in Upstate New York was responsibible for my childhood couch potato training. I do miss mountains, though. I lived in Ojai, California for a year and that place was incredible. Here in the flatlands I had to hire out for a truckload of dirt for my flowerbed "hill" in my front yard!

Lani

Amy,

I see you're back. How'd it go?

Lani

All went well. Really sleepy, took a very long nap this afternoon.
I did have to have the car warmed before I would go outside though. BRRRRR. 57*F here now. I did the "up north bite" I miss the snow, and really miss the change in seasons, but you can keep the cold. I tell people I was colder in Florida than I ever was in Alaska.

Amy,

Well then it's time for you to have a new thread. "Panic Attack" no longer suits you. You "sound" like you're doing just fine. Keep it up.

Lani

How about COLD N FLORIDA?
and as a side note, I found out today that I am HPV16+

Absolutely! It's already 53 and falling here. Projected at 42 degrees tonight. I know it's worse up there where you are in LA (Lower Alabama). And no, I don't miss snow, or sleet, or ice - or even the seasons. I have silk fall leaves in a wreath on my front door and autumn-colored flowers in the bed. We have seasons, just different. Like we don't rake leaves in the fall. We have a ton of leaves to rake up in the spring, though. My house is surrounded by huge oak trees.

I imagine the HPV results answered some questions for you. I never needed to wonder why. Smokin' & drinkin' is what did it to me.

Lani

49F and falling.

I think it as the smoking,drinking and fooling around.
What movie is that from?

Hmmm. "My Life Story"? "It's a Wonderful Life"? "Chickens Come Home to Roost"? My goodness, so many to choose from.

Nope, I figured it out

MEATBALLS. It was a song.

I woke up this am and had to Buddy, our 11 mo old "puppy", for his p walk and I could see my BREATH. I just went swimming Sunday, give me a break. I too hate the cold and I hate people here in Florida saying things like "it (the cold) will be a welcome relief". They need to move back up north if they like it so much and take IT with them. I'll take sweat over chills all the time.

Amy,

Glad to see you among us again.

I did live in FL for a couple years, Vero Beach. I do know how it can feel incredibly cold when you are used to it beign so warm all the time. I remember in Feb it sure was cold. One year during a cold spell, we went to the beach at Sebastian Inlet. It sure was a funny sight seeing all the Northerners actually swimming when the temp was only in the 40s.

Here, Ive had 2 days of snow. My yard, deck and roof are covered. Roads are wet or in places slushy, go 3 miles from my house and there is nothing at all. Thats the weather here in the mountains. Some places closeby got hit with a foot of snow, I was lucky. Oddest part is that 20 minutes south and they got nothing but rain.

Amy,
It's ok not to feel "positive". I read a study that attitude made NO difference to survival outcome (prayer didn't make any difference in outcome either).

It does help those around you though - that's why so many tell you to "be positive" (they're the ones who need to think "positive").

You have my permission to be scared sh*tless - there were many times I was - even with the anti-anxiety meds. It's like going into combat - if anyone tells you they're not scared - they're lying.

Remember to breath in and out. Take it one day at a time and stay out of the future.

Gary,
Good for you for telling it like it is! It is scary to hear
how brave everyone is when you are scared to pieces and you
think you are a wimp and a "goner". I have been there - even though everyone (even my psychologist) saying to not ever let my husband see me cry and not to let anyone know I am upset. ( I did not
go back to him, by the way).

You are right-one day at a time. One day may be scary and the next
wonderful, until you get more good than bad hopefully.

Take care
Debbie

I haven't seen Amy K back here since her first radiation treatment Tuesday. I can see she hasn't posted since then. Has anyone heard from her by PM?

Amy, You seemed in pretty good spirits on Tuesday, so I'm thinking you've probably just been busy, but OK. If you need/want to talk, though, please write a post here, or PM me if you want. We can talk by phone, too, if you want. Just let me know.

Lani

Lani:

Try sending her an email. Her email is posted on her profile. Its not unusual for people to not post often while goint thru tx.

Christine,

She wrote me a PM shortly after I had posted this and we've been writing back and forth since then by PM. She's been checking in to the Forum from time to time, just not posting.

She's doing just fine so far with the Rad - says it's a breeze, but the chemo is knocking her for a loop each week so she's feeling really bad for a couple of days afterward.

Her spirits are still good though. She's a champ (You are, Amy) and I told her she should start a new thread because she's worked through her "Panic attack".

Lani

Lani

Thanks for the update.

Alot of times people arent up to posting while being treated. Glad to know you have contact with her and she has overcome her fears.

Please let her know I am wishing her well.

I forgot to add that I fainted when I got my initial Dx. What puzzles me is why they can't let you "enjoy" your unconscious "bliss". Oh no, they HAVE to pull out the smelling salts and make sure that you're awake. Then when you wake up the whole staff is in the room wondering what happened (like it's abnormal to faint when someone hands you a death sentence in essence). The first ENT I saw also got angry with me for waiting too long to come in and that I should get my affairs in order - will, trust, advanced directives, etc. Just a fun filled experience. I stop by there every year on the anniversary (Nov. 22nd) just to tweak him.

I was in denial that this could have been anything but OC, that I had a peritonsillar abcess (PTA)- even found photos on the net that looked just like it. I was more scared of the big needles they were going to use to drain it. During my Google searches, I ran across one site where a guy had very graphic photos of a radical neck disection. When the ENT gave me the "good news" those images immediately came back and out I went. Thank God for Zanax...

LOL I wish I could faint. It would make the next 5 weeks SO much eazier.

Amy

It will be over before you know it and next year this time you will be getting ready for a huge Thanksgiving dinner.

Amy,

Are/were you a tobacco user?

If not, have they tested you for HPV?

David, yes to both. I quit smoking 03/04/08.
I smoke for about 25 years.
Chemo Doc had tonsils tested for HPV. I came back HPV16+

Both a smoker and HPV+. Now I haven't heard of that combo before. I wonder if it's possible or probable to have HPV+ and - SCC going on at the same time.

Why not? It's like being shot while in a car accident -- Two independent causes of trauma to the body... Not unlike someone having brain cancer and prostate cancer at the same time.

I was set straight by a PM that studies have concluded that not only is it possible by common to see HPV+ with a smoking history so much so that it is recommended to get tested for HPV even with a smoking history in certain cases.

Well, I'm glad to hear that at least SOMEONE has had the sense to test smoker/drinkers for HPV also. The way David makes it sound, you think all smokers were virgins and couldn't possibly be HPV positive.

Take care,
Eileen

Eileen,

Well when you put it that way it does sound stupid to think that there couldn't an HPV+ patient with a tobacco history. I guess I have just been blinded by the thought that if I had SCC and I was not a tobacco user then HPV was likely my cause and the reverse seemed logical that if I had SCC and I was a tobacco user then tobacco was the likely cause. I guess it's even a logical conclusion that a tobacco user could have 2 different Oral cancers going on at the same time. One HPV+ and one HPV-. The more I think I understand, the less I really know.

David,
One person with two primaries, one from HPV and the other potentially from smoking sound possible enough, but so far non of the studies have reported this.

They do seem to routinely find that at least 20% of the HPV caused SCC is found in people who also happen to smoke.

The percentage of HPV caused OC found in smokers should closely parallel the smoking rate, and (guess what!) that rate is also about 20% of US adults.

My MO is working on the "she's only 40 it's probably caused by the HPV16" theory. Stating that it wont make a bit of difference on how we treat you. What will be different is the reoccurance rate. I have to say. This was the only time in my life I HOPED to be positive for an STD.
Amy

I'll drink to that...although since this surgery .....they may not be far off lol

Don,

I wonder if they ever look beyond finding one or the other? So many variables to consider and I'm still stuck in the marvels of our Universe.

David,
For Oropharynx OC, I believe the percentage attributed to other "unknowns" was roughly 15% in the May 2007 study:

Case�Control Study of Human Papillomavirus and Oropharyngeal Cancer (Maura L. Gillison, Johns Hopkins et al...)

The way the study presents this "slice of the pie" using odds ratios and seemingly very broad Confidence Intervals for each of these possible (but perhaps unlikely) risk factors makes it hard for me to be sure if I am understanding it properly.

("Unknowns" being genetic, various dental hygiene factors, diet, low BMI, and others mentioned in the study)

It's like trying to debate the chicken and the egg theory. You will just spin your wheels, chase your tail and drive yourself mad. Too many veriables and with humans there will always be.
What is important is fixing it. IMO

Hi Amy,

I did not have the same treatment you are having but I did have a panic attck and it is scary!!! I was in a meeting at work and had to leave. My fiancee took me to the hospital and they said I was fine. Now every time I go my oncologist I'm scared. I started seeing a therapist and that has helped me a lot. I'm sure you feel overwhelmed with doctor appointments and can't think about another one, but seeing therapist is the only thing that has helped me. I go every 2 weeks and I take Lexapro. They gave me Xanex and it did not help. Lexapro (and other meds) are taken daily and keep you on a even keel so you can cope. You should talk to your doc about it. It has been a miracle for me.