Hello,

There is an article about Grant Achatz in the current issue of Chicago Magazine. The link is: Chicago Magazine: Burned.

Hope everyone is having a good day!

Jean

That's so wonderful that the Erbitux worked for him. I hope he has many more cancer free years ahead.

Good article.

[quote=davidcpa]Good article.[/quote]

Agreed - very good

"Achatz may have avoided what is perhaps one of the most debilitating surgeries that exist: Survivors of total glossectomies�removal of the whole tongue�can barely talk and must drink their food using gravity."

NOT ALWAYS TRUE


Its a great article I hope that it is a 100 percent success.

This is a little hard for me and probably some other people to read. As a near total glossectomy patient who went through the graft surgery chemo and radiation 1 year ago - I am eating most everything I want and tasting. AND speaking reasonable well- enough to get along in the world. My life isn't misery.

I'm curious, how can you taste with most of the tongue removed?

Kate, I'm sorry if that article upset you or anyone else. I winced when I read it ... I thought of you, your fight, your strength and your happiness. It seemed like an insensitive (and wrong) statement for the author to make.

Perhaps this is a good time for OCF to write a letter to the editor of the magazine ... this magazine is owned by the Chicago Tribune and it might be a good access point to the paper, too.

Brian?

In addition to letters to the editor there is a "comments" section at the end of the article.

Good idea! I'm going to go comment right now ....

[quote=misskate]"Achatz may have avoided what is perhaps one of the most debilitating surgeries that exist: Survivors of total glossectomies�removal of the whole tongue�can barely talk and must drink their food using gravity."

NOT ALWAYS TRUE [/quote]

Some sensationalism by the magazine going one here ?!? The Media is getting real bad about doing things like that to sell.....

Well perhaps I should call up and make a reservation for Alinea next time I'm in chicago and request to see the chef! I think I will go there actually. I have a trip planned to Chicago soon.

There are tastebuds all over the oral cavity- not just the ones on your tongue. There are lots in your cheek buds and upper palette. I have a tiny sliver of my original tongue attached to the skin graft that is now my tongue. Most taste is also really gotten through your sense of smell I think and I have a keen sense of smell. The tongue gives you the texture and sweet salty and sour. There must be those throughout the rest of the mouth as well.

Maybe I am a one in a million case but I don't think I am. I also had a pharagectomy - they took out part of my throat tissue-s o the opening is wider in the back of my throat- so I htink that give me an advantage..I started trying to eat again a few weeks after my total glossectomy and then when the radiation effects kicked in- I didn't really eat again for a few months but I've been eating really well for the past 5 months. My lastest to conquer has been salad- which was inititally impossible- but now I eat it everyday.

It was a long long struggle but I was just determined.
I defnitely do not get to enjoy food quite as much as I used to because my tongue doesn't really absorb the taste too well but I do taste everything pretty strongly actually and it IS very very pleasurable and ejoyable and I still have a lot of sublty in my taste range. Very crunchy things I find to be a struggle but other than that everything is fair game - I just eat slow and with small bites and tons of water to wash things down.

I knwo of another full glossectomy patient who aslo eats very well too. WE met via this site. Her name is Nancy and she inspired me to keep trying.
I love good food and good restaurants and that was never going to be given up without a fight and I'm so thankful that it isn't.
I guess I just never considered not being able to do it.

Anyways- I just get a little sad when people portray someone in my postion as never being able to eat or speeka nd basically have a miserable reclusive life. This is ALL that I read about before my surgery and afterwards and it was very disheartening and upsetting to read about

Yes it is one of the worst things that could ever happen to a person. Yes some people can never eat regular food again... alot of peope.. but it isn't everyone. I am very very lucky and fortunate- but my life is wonderful and happy. I survived this and I'm eating socially with friends out in restaurants all the time. I call friends and they can understand me. I'm still trying to get more brave in calling other people. But I am fully functional in life I communicate well and eat well which is more than I coudl have ever hoped for.

My main problem with this article is that I think it portrays the surgery and treatments that many people that have tongue cancer
NEED to have in order to be cured and live. I hope that his chemo and radiation treatments are a success but its very early to know for sure what the success rate or this treatments is in comparison to surgery radiation and chemo.

The patient needs to know the risks of going this route.
This year already I've met two different women my age who have had tongue cancer. One was stage 3 but she went with chemo and radiation 1st- It didn't get rid of the tumor and it came back very aggerssively she died a few months later. Another woman who has all my same doctors here in SF was stage 1- they did surgury no radiation. It came back 2 times- the 3rd time it was stage 2- but it hadn't spread to her lymph nodes or anything- last week they just found a mass in her chest and its in her lungs. She has a few months to live. She's 32 with a baby boy.
So for me personally I know I made the right decision. I'm not sitting around miserable drinking liquid food and not speaking to anyone. Yes I eat slower and my speech is a little funny but I'm 90 percent intelligable ....my life is very full and fun and happy.

MissKate, I love reading your posts. You make me smile just thinking about your very full and fun and happy life!

I am SO glad that you are able to taste. I didn't know that there were taste buds all over your mouth. My brother (who was in the same study at U of C as Grant) is slowly regaining his sense of taste. I will share the taste bud information with him.

If you go to Alinea, be prepared for a "different" type of restaurant experience. I have not yet been there, but I have heard that it is more like theatre. There are a lot of great restaurants in Chicago - let me know if you would like some recommendations!

Also - if you are a baseball fan - you MUST go to Wrigley Field!

Well thanks! I will be sure to check out the restaurants in chicago. I actually lived there for 2 yrs awhile ago but haven't been back in about 6 yrs!

Anyways- My life has changed but it certainly isn't a miserable existance and I want people to know that - especially anyone facing the reccomended treatments for this disease. My Drs at UCSF also felt I had no choice but to do this radical surgery so that I could have a very good chance at a cure so I can live a long time. It doesn't matter if they can save your tongue but then you end up dieing form this.

From my limited experience so far w other patients I've been in contact with is that most of the time it seems like they end up having to have the surgery and at that point the cancer has been floating around your body for awhile. After radiation and chemo surgery is a lot harder on your body. The surgery was really rough to recover from without having gone through all that- then 3 weeks afterwards I had to start right up on chemo and radiation which hopefully took care of the rest. That is the reccomended standard of treatment that is the most successful as far as I have been informed. I hope that Greg responds 100 percent to his treatment choice I really do. but his experience isn't what ususally happenes and his choice of treatment iswhat the medical community for head and neck cancer has neccesarily agrees upon as the best option.


anyways! Thanks so much for your positive response! I am really happy that I don't have a tongue now- Never thought I'd say that- but it had a cancerous tumor in it that almost killed me and I've figured out how to live a full life without it so that I can live to be a old lady!

This is a good article, but there are many of us here that have been thru much more and are happier than Achatz seems to be. Smile man and feel lucky that you kicked it. I have no taste but sure try to liquify everything to get nourishment from food other than Carnation VHC and Ensure. Everything can make this mouth burn and hurt, but I'm alive and kickin.

Kate- You are truly amazing and an inspiration to patients and caregivers alike. Even though things didn't go as smoothly as we thought they would, my husband doesn't regret the surgery as well as all the treatments he has been through. You have to give this beast the best fight you have available. That way you know you've done all you could do. No regrets or what ifs-no matter what the final outcome.
Sue

Kate - you are so right in everything you have said. I think it would be very beneficial for people who have read this article (and the one in the New Yorker) to realize that he has taken a big gamble in order to save his tongue that might not work out in the long run - and that people like you are doing great! I don't think it points out well what the current evidence and research shows as the most effective treatment. It might even make some people regret their decisions, which is sad...

And everytime I read an article that talks about the typical tongue cancer patient being a 60 + yr old male who smokes and drinks heavily, it also frustrates me. I just had to go to the Emergency room for a fall in which I split open my left ear, on the same side as my neck dissection was, and of course I explained to both the triage nurse and the doctor who saw me about my oral cancer - reaction from both of them was identical - first question was "do you smoke?" (no, not for almost 25 years and back then, only infrequently) and then "how did someone like you get this?" So I educated both of them on the fact that many people who have oral cancer don't fit that stereotype, and about the link to the HPV virus (they had never heard of that), etc.

Hi Ginny- Thanks for your message. I feel like I'm always educating people too on the facts. How did you get tested as being at a high risk of reoccurance? What clinical trial are you part of to prevent it? Its is medicine you take everyday? does it have side effects?

THX! K

Kate, I completely agree with you about the need to be aggressive with this cancer and aim to live the best quality life you can afterwards. However, as someone who has a swallowing disability and may well have to consume mostly liquid foods for the rest of my life I need to say this - *I* don't like being prtrayed as someone that must have a miserable life because of that--which I often fell you do in your posts.

I am very glad for you that you were stubborn and lucky enough to be able to battle your way back to swallowing normally after a glossectomny. There are those of us --even who didn't lose as much of our tongue--equally as stubborn but not as lucky because the etiology of our swallowing problem is just a little different. I've gone through lots of medcial treatment including one which left me with a painfully performated esophagus and a collapsed lung at one point just to be able to swallow anything at all! But until someone can do reconstructive surgery for the epilglottis I am probably always going to have some serious swallowing problems since half of mine is worn away.

It was this statement that bothered me:
" I'm not sitting around miserable drinking liquid food "

I would be lying if I said that not being able to eat normally doens't really bother me at times. Coming to an acceptance that this might be a permanent problem and that I can live with it has taken me years. On the other hand, in many ways I still have a happy and fulfilling life. I can talk fine although I still have a very easily irriated tongue so by the end of the day my mouth is painful and I tend to not want to speak as much. The postive side of that is I have become a much better listener, an avid letter-writer again, and I read a lot.

I think it would be best if we don't presume any OC survivor's existence is a miserable one, regardless of the extremity of the treatment they had or the disabling after-effects. You and I both had very agressive treatment for our disease. I was a stage 2 cancer and at the time the NCCN guidelines were unclear for cancers at stage 2 with the featiures mine had. I took the most aggressive recommendation because I was afraid of it coming back in a much worse way otherwise. We are both fighters and survivors. And so far both cancer free whic is the really important thing. Please don't demean my life just because I have a disability you managed to not have.

Nelie

Kate,

Way to go. Your positive attitude certainly contributed to your response to your treatment.

I have to say something about the drinking. I'm no drinker and never have been, but the smoking I did do until the last few months. I quit that after surgery and will never lite up again.

Nelie-
I am So so sorry to have inadvertently put you down. I feel AWFUL I apologize profusely. I think in my excitement and passion to progress with eating I may have said some things I didn't mean to be interpreted as insulting...You are correct. Everyone surgery and recovery goes differently and it is certainly not because of lack of effort or desire that you eat a liquid diet.. Your life is not miserable because you have a liquid diet. My life isn't better in comparison and I didn't mean that at all and I apologize if my words implied that. I really meant that others (as this article) do often portray our lives as miserable and reclusive - and that the way that we eat and speak limits us and the pleasure we get out of life.


Anyways- hope you accept my apology. I know that your recovery has been difficult as well and I didn't mean to put you or your progress and achievements with your recovery down at all.

You know- I've been thinking I should probably take some time off from this site anyway! Its bringing me down lately.

See you guys! Over and out.


KATE

Kate,

I don't think an apology from you is warranted or needed at all. You were posting your experience...how you felt...and it had nothing to do with Nelie and in no way "put her down." Her reply was an overreaction to a very innocent statement. I am not sure why she felt the need to say what she said (I am sure she is angry about the damage that this illness and subsenquent treatment has done but shouldn't take it out on you or any other poster) but when I read both posts this morning, I wanted to say something then but decided to calm down and wait.

I reread everything again tonight and after your post now and I just want you to know that your experience is very meaningful to a lot of us here and we welcome your posts always. If you need to, take some time off, but please come back....you never know how much you might help someone by talking about YOUR life and how you have managed your illness and recovery from OC.

Hugs, Deb

I think when there is a small disagreement, which has been resolved between the two people who had it, that it does not serve anyone to have others pile onto one side or the other after the fact. Misunderstandings and disagreements happen between individuals, and public boards are no different. But when they do, I think we should not do things to perpetuate the issue. A perfect time for those who feel the need to comment or take sides to use the PM feature.

Brian,
I will abide by your request to take this offline going forward, but I do question your statement that the disagreement has been resolved...you have one member that feels the need to leave the board. Are you OK with this?

It was not my intent to "perpetuate the issue" but to assure Kate that she was valued. It is always my intent to be of help here, not detract.

Deb

One person said something that reflected their personal feelings, another person took it personally and said so (even though it wasn't directed at them). The first person apologized. The person said the site was bringing them down, which I get, dealing with all the issues everyday weighs on people, leave psychic debris, and posters leave all the time to get on with their lives, and try to put it all behind them. Even the long term posters whose heart is really into helping others... say Gary, go distant for awhile to get perspective on their own life occasionally. No one said that they were leaving because of one misunderstanding with one other person. So yes, I am OK with people coming and going. Those that have the calling to help, come back. Others move on for good. Since the board went up in 2002 it has been this way. Posting here takes time from your life.

Even those with a desire to help, sometimes disappear for awhile or taper to only a few posts per month because they tire of answering the same questions over and over again. There are many reasons. Not having talked to Kate about this, I do not know hers, but she does not strike me as the kind of person that would let one misunderstanding keep her from doing something that she wanted to do. She is one tough lady.

Well said, Brian, and very true about the experience of users with message boards. Awhile back, I was a participant on a message board for quitting smoking. Great site, and great participants -- but I found that the site was actually making it more difficult for me to quit, because it kept smoking in the front of my brain. So I distanced myself, and successfully quit. Now I visit every few months,or on the annual anniversary, and it is fine.

I can get overloaded between the boards here, volunteering at our local CCC and dealing with some other friends and relatives who are going through treatment for various cancers. Some days I just want to find a remote Caribbean island and escape. The feeling passes, and I get back to the drill. By the same token, I no longer participate in the board I visited to help me get through my spinal fusion. Different people, different issues -- it's all good.

Thanks for having the perseverance to keep this going!

I am posting this publicly, since others here have felt the need to jump in and take sides over something that I think Kate and I were and are quite capable of resolving respectfully between ourselves, but I am also sending a PM to Kate since she may not be reading here.

Kate, I really appreciate your apology. I realize that there was no bad intention behind what you said and I apologize myself if what I said made you feel as though I thought there was. I think things are so tricky here because we've all had a very bad hand dealt to us in terms of getting oral cancer to begin with and one of our natural ways of coping (I mean as human beings--this is the area of psychology in which I trained) is to find a group of people or a person or two who are suffering more than us and think to ourselves "well at least I'm not having to go through that". And in fact doing that increases our gratitude for what we do have and that is a good thing.

The hard thing, which has really been brought hom to me here at times, is that because there is so much that is totally beyond our control when we have cancer, it is also easy to come to believe that you (I mean you generally here, not you Kate) didn't suffer that other fate entirely because of something you did have control over (you chose a better doctor, had a better attitude, were more stubborn, fought harder). Although all those things DO make a difference I believe, there are also people who chose good doctors, fought hard, were stubborn, and didn't get the good outcome (they can;t eat like me, or they get a recurrence) and when you (and now I am speaking from my personal experience here) are on THAT end of things and a witness to people who got the good outcome doing what is natural in terms of being grateful they aren't in your group and taking what credit they can that they didn't end up there, it can feel very unfair. Even when it is not at all meant that way.

Perhaps I am "oversensitive" about remarks that are very negative towards being phsyically dependent on a tube or about having to eat nothing but liquids but I really don't think amnyone who hasn't walked in my shoes for the last three years AFTER my OC treatment --which were not years of passive acceptance of this but of constant painful surgery and physical therapy to fight this--can judge what I've been through either or how those remarks make me feel. And my only intent in my post to you was just to raise that awareness. Again, I didn't at all think there was any intentional meanness there.

I agree with Deb here that your perspective here is very valuable and valued and I hope if you take a break (which I too have done) that you come back.

Nelie

One thing for sure. we all have our opinions and disagreements. But for sure, it's up to us to think and say what we feel. I believe in saying what comes to mind and I hope everyone else does too. Life would be boring as hell if we all had the same thoughts and opinions.

Jim,

You have never, to my knowledge, posted something that caused someone anguish. Oh wait, maybe David .

Deb