After reading the board for a while, I've noticed that a lot of the group has had a reoccurrence of their cancer. I have to admit it concerns me (as I don't want to have to deal with this again) and makes me wonder if the numbers are skewed because those who have had a second bout with cancer are more likely to be on the board.
My ENT told me that with a Stage 2 tumor, removed with clean margins, and clear lymph nodes that I had an 85% chance of a cure. I know you're not doctors, but does this seem reasonable? What have others been told about the odds after their first treatment?
Thanks in advance, Aimee
---------------------------------------
SCC of tongue, T2N0M0
Partial glossectomy, modified right side neck dissection 2/06
Hi Aimee -
I too look for recurrences in this forum, as my husband has had 3 of them, so the subject (and statistics) are of interest to us also. He was first dx in March of 2002, with small lesion in cheek. BTW, he has never smoked or chewed, nor is he a drinker. He is now 61. That was removed, neck dissection - clean nodes. He had skin removed from leg and a bolster holding the graft in place. Because it was small and margins clear, they opted against radiation. It recurred again last year, even smaller and he again had more surgery, removing 2 lower back molars and surrounding tissue. Opted against rads again, because of small size, clear scans and clean margins. Now it popped up again about over a month ago, and by now, I am sure people are thinking that we should have had rads and it would not have reoccured, but his radiologist said that they would have aimed at a different part and he felt that it possibly would have made no difference, because this latest lesion appeared on top this time. Again, his surgery involved losing that top last molar (same side) and tissue...once again, so tiny that margins were clear. The ENT said the lesion was about the size of an "e" in this email. His latest PET and CT scans were clear from lungs to brain to oral cavity, or as they say, "no activity". We still question whether avoiding rads is the right position, but his oncologist, ENT, AND even the RADIOLOGIST said they could see no reason for it at this time because they seem to "get it all" each time. They think each one has been a "primary" tumor. He just had a post-op check-up yesterday and the doctor was very pleased. Anyway, to answer briefly your question, my husband's DID recur, but he never had rads, so only God knows if that's why or it would have come back again anyway. Hope that helps. I hope that yours never returns also. The people in here are the most helpful and supportive group of people I've ever encountered, so their personal journeys and sharing of experiences has been extremely helpful to me and others. I am grateful for Brian and others who founded this site and keep it so chock-full of information and updates.
One last thing, and this is pure conjecture on my part. We ALL wonder what triggers the cell malfunctions. For some odd reason, my husband's all seemed to show up right by a gold filling. Now I know gold is inert and pure, HOWEVER, there are alloys in fillings, and in my OWN mind, I sometimes wonder if something in those fillings irritated and reacted with the chemistry at that spot in his mouth? Those teeth are all gone now, so we shall see if my theory is "swiss cheese" . Our minds continue their "search".
Hi Aimee,
When I was diagnosed I asked my doctor "what are my chances"? His response to me was "this cancer will either kill you or it won't". When I first came to this website I was kind of hung up on talking about statistics, it's our fear that makes us need to do that. Truth is, no one, and I mean NO ONE, can predict what our outcomes will be. Your fear will slowly start to subside and you'll be able to accept that the only guarantee you have right now is this particular day you're living in. Once I got to that point, life was so much more enjoyable. I still have my times of fear, but the fear is far smaller and more manageable. I'm a three year survivor now and I feel confident that I'll be around this message board for many more years to come.
According to the 2002 report of the American Joint Committee for Cancer (AJCC) Oropharynx, 5 year survival rates for stage II are about 57.3%.
This doesn't factor in your general health, health habits, sex, age or ethnicity. We have had many discussion about statistics and it is best to ignore them.
I am not going to become a number until I am dead.
Minnie, I just have to say that was very good advice and I'm going to follow it too. I too have been too fixated on trying to figure out my husbands future and today is passing us by.
Thank you
kerry
I haven't posted before but, let me say this. Everything, little taste bud, tiny white spot, some bump, makes you want to go screamin from the house. You think ok, what? Fillings? I had my well water tested. Bottom line is...it is what it is. You got it who knows why. I played in ddt fog when I was a kid, is this why?
Who knows...doesn't matter, here we are let's deal. Have some hope. We can do this.
I really am glad I found this site. Tell you the truth, I don't feel worthy enough to be here. Gratefull to everyone here. Thanks. I have a pretty positive attitude and will support anyone who needs me.
Theresa, you have the credentials, so join in. Nothing unworthy about it. I like your attitude which parallels mine. When I was a kid I cleaned the manual typewriter (remember those, people?) keys with carbon tetrachloride, which is now known to be a carcinogen, but I didn't drink it. Bottom line, who cares why, when all is said and done? That we are here is what counts.
With regard to stats of reoccurence, they are an AVERAGE. I am definitely not average and in fact no one is, so that is how much weight you should give to them. I am too tired to get up on my soap box about this, but remember that time spent worrying about something that may happen, is time wasted, that could be spent in happier pursuits. If there is a reoccurrence, then worry is justified. Just go to checkups, live a healthy life, and have some fun.
Hi All, I think this is a great theme because Aimee has identified the fear that all of us struggle with - is any of this working and has it been worth it to go through the pain of surgery, chemo or radiation? Are we going to survive these cancers that have invaded all our lives? I don't pretend to have any answers to that but I am trying to find the balance between my hope and fear that Jack's cancer is really gone.
It's just too soon in my case because he only completed radiation 3 weeks ago, and has the 4th cycle of chemo next week - if his counts hold up. Like you Aimee his surgery was in Febuary so I think some of the fear is about adjusting to a fairly new diagnosis. My husband did not smoke or drink either but it really doesn't matter we're still dealing with it.
Thank you Minnie for sharing that fear will subside over time and that it never goes away completely. For me that's comforting to know. Sometimes I feel grossly inadequate that I am not as brave or positive as so many people on this forum. But reading this today made me realize it's a process with a lot of ups and downs, and it takes time to get to a healthy place. We still need to experience our feelings in order to face our fears and let them go. Medication and counseling also helps.
My husband is making progress since he completed his radiation, he is feeling better in general and is swallowing some soft food. His counts are low so they're treating that and we're hoping he will be able to have the chemo next week. We're hoping the 30 miserable shots of amifostine did some good, and that he won't be too beat up by the last cycle of cisplatin. We're hoping the feeding tube can come out after his follow up in August and that he'll be able to eat again. We're hoping the trismus and lymphedema resolve, that his hearing improves, and that he won't need pain medication as time goes on. Mostly we're hoping he survives and does not get a recurrence - just like everyone else.
I thank you all for giving me some peace of mind and perspective today. Intellectually I know there are no guarantees but emotionally I'd still like to have one. It's good to strive to enjoy the fact that we have today but it's also good to know that if we can't do that up front it will come in time.
Regards JoAnne
Aimee,
you have pointed out the possibility that the forum population is skewed towards people that have had a more difficult time with their cancer cases. We have no way to know for certain (without a study). I believe you are correct that the forum population is not an "average" statistical population. Casual observation: we are younger (because of computer access), we probably are more caring (or needy, or both), we probably have had more difficult treatment and recovery cycles. I also believe that many people come here then, as they return to good health, drift back to a "normal" life. This means that the ones left remaining are the ones willing to help, or needing to help, or the ones needing help and support. A high probability exsists that we regular forum visitors are outside (and way above) "average".
Your question about statistics is similar to others we have had. Do some searching here and you will find many cogent discussions on statistics. In the final analisis, you will realize as Minnie has said, (and I like how her doctor said it) there is no way to predict what will happen.
Live each day fully and be happy when you can get out of bed the next day.
I have to agree with Mark, not to mention that the ones who are still here probably need therapy - at least I do anyway;-) It's hard to live in the world of cancer all of the time. But it is typical of any counseling or "people helping" experience, some come and take or get what they need then move on and a few feel indebted for this gift and wish to give back. It makes it all worth while, when occasionally, someone reports back that we made a difference.
It has recently occurred to me that I am suffering from this fear, still, even though I am one of the "lucky" ones - advanced staging, rad/chemo and a complete response to treatment with relatively few side effects. The emotional scars are now starting to surface at 3 1/3 years post Tx (Some mild neuropathy and neck muscle spasms are far as the physical stuff goes). Go figure that one out. I honestly don't know how anyone can drift back to a "normal" life after this. They either must be made out of something that I am not or they are in complete denial. We often speak of the "new normal" and I am still learning just what exactly that means.
From a sheer numbers perspective OCF is still a microcosm in the world or oral cancer and there are 10's of thousands of oral cancer patients, annually, who are not aware of us. There are 30,000 new Dx every year, we average about 1,000 new members per year. How many "lurkers" there are is anybody's guess. There are a lot of hits on the site.
I fully second Marks last line...
Hi Aimeeb,
I, like you, have not been through what most of the folks here have been through, so it seems that my part of the 'story' has already been told. I do come back to the board and check on people, does that make me a lurker? I don't know I am always logged in and anyone can see that I'm on this site but I believe that the lurkers are welcome too (I think some of my family are here as guests) I don't say much since there are so many others that have such good information. I wanted to reply to you to let you know you are definitely not alone and there are many others here whose situations are close to yours, it took me around 5 months to figure that out.
Keep the faith, and try to push the fear to the back of your mind, there is so much more to do than worry! I hurry about my life and try to keep busy, that helps to keep the fear in the background, having said that, I think the fear will allways be with me so I choose to not let it be in charge.
For someone without much to say I have said quite a bit
And you will be another person on this site that I come back and check on!
God Bless,
Sharon
OH! If you check around on the odds of recurrence like I did months ago you will find a lot of different answers! If you feel like you have to, go ahead, and you will likely reach the conclusion I have come to, there is a lot of information, a lot of opinions, and bottom line, no one knows for sure!
Peace and Hugs
Sharon
Hi Sharon and welcome back!
You are only a "lurker" if you are not registered. They only show up as X "number of guests", in the "logged in" section.
I have chosen to not show up in the logged in section in my preferences.
Thank you all for your responses and some thought provoking comments. I'm a worrier by nature and so it is hard for me to let go. I see this is what I need to do, so I hope with time, I'll be able to do so.
I don't think anyone expects to get cancer, but this was really out of the blue for me. I'm one of the younger patients that there are more and more of. I'm 31 and have never drank nor used tobacco, so the diagnosis really surprised me. I was very fortunate that the tumor had caused an ulcer in my mouth that hurt so that even the General Practitioner, ENT, and Dentist who dismissed my case didn't stop me and I found the Oral Surgeon who probably saved my life. But if it happened once, who's to say it won't happen again. Hence, my worry.
So I guess I just breathe and keep going. This board has been such a great source of information and support. Thank you all again.
--Aimee
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SCC of tongue, T2N0M0
Partial glossectomy, modified right side neck dissection 2/06
Hello all,
I am one of those who worry, however, I do not want to sound nieve but I must convince myself. I know the seriousness of this illness and the reality of stats for this cancer and others but plain and simple not everyone dies from cancer and I am convinced that I am one who will survive, I have had this attitude since day one. That does not mean that I have not been scared and had my doubts, cried my self to sleep, shit my pants (figure of speech)and woe is me. I have experienced all of those things but in the end I will be one who wins, I believe that I have no ther choice than to think that way. I just hope that I am right. As far as I and my doctors know I do not have Cancer today and that is good enough for me.
lenny
This discussion touches me too. I am 3.5 years out from Dx and feeling great. I don't think about dying, but I am aware that it is on my mind. I won't buy any new clothes. I just keep patching up my old pickup truck to drive. I realize that I don't want to "waste" money on new things for me - it implies I won't be around to wear them out. My wife and I were grocery shopping the other day. We needed vanilla ice cream (the only thing I can swallow) and I told her to find something cheap. (Don't waste the good stuff on me???) It was weird. I don't feel like a martyr or anything, just being practical.
I've already lived much longer than they thought I would - even than I thought I would. I'm delighted. I guess my 'new normal' doesn't have much advanced planning in it, or any entitlement either. Odd.
I delight in my family and interacting with my grown kids and new grandkids. I love spending time with my wife. I have a couple of part time jobs - teaching and acedemic advising at the college. My dog goes with me when I go fishing. Life is good.
I don't want to die of cancer - or anything else I guess. Like most of you, today is my day. There is so little I can do about tomorrow's health, tomorrow's diagnosis, tomorrow's pain. What I can tell you is: I don't have cancer today. That makes me smile.
Be strong, Tom (And go to the Getting Through It project and help me with this dang book!!)
Amy, for what it's worth I heard a lot of diferent stats about Stage II. My ENT originally said 75-80% chance of a cure. When I went for a second opinion at Dana Farber they told me that without radiation I had a 30% chance of recurrence (Like you, I had clean nodes and clean margins but my tunmor did show signs of perineural invasion and I'm not sure if that influences the odds they gave me) but they told me with radiation and chemo I had an 80-85% chance of cure.
Like you, the numbers are ones I want to know. I'm used to thinking in terms of statistics. But, ultimately, I can't know what's in my future no matter what. Although I have been given better odds than others in here, to me even an 80% chance of cure is scary--worse odds than Russian roulette and, in my case, having already used my magic radiation bullet, a recurrence would be worse news than in your case where you could still zap it with radiation.
When I think about this at all it terrifies me (and on top of that I have to add in odds of a breast cancer recurrence). Often I cope by denial that it could possibly come back to get me. Sometimes that doesn't work and I just sit with the fear. When I think about it, I try to use it to focus my current life on what I value and love. TAnd enjoy the moment. There's really not much else any of us can do.
Nelie
Statistics can be source of discouragement and/or confusion. I've hesitated posting what my ENT told me because I don't want to discourage anyone unnecessarily.
I'm with Mark on this - don't really want to ask 'cause the answer might scare me too much. Even though I never asked directly about the chance of recurrence, my doc offered some probabilities.
In case this might be helpful, he told me that if 250 people had the diagnosis that I had (T1 with positive margins treated with surgery and 35 radiation treatments), 100 would have a recurrence. Of that 100, 70 would have it in the first year, 20 in the second and the remaining 10 spread over the next 3 years.
That was for me. Does it apply to anyone else? Don't know. - Sheldon
wow. He's saying a 40% chance of recurrence overall even with radiation. That's definitely higher than anything I was told. But it is all really SO variable and depends on what data he is using and who really knows what assumptions he was making to extrapolate those numbers. These wildly different numbers we have all gotten are a good illustration of the limits on how useful these statistics can possibly be.
Nelie
Aimeeb
Forget odds, I was stage 4. I'm just this month 5 years out.
Amen Joan and congratulations on 5 years of being cancer free. It gives hope to the rest of us.
Everyday I have to make a decision whether or not to live in fear and/or anxiety and just give myself over to it, which is all too easy to do, or to choose to live in the "now" and just do what is in front of me to be done.
The numbers vary so widely that you can pick what set of numbers you want. My AJCC numbers were 62% chance of being dead in 5 years. My RO CCC numbers were 20% and the greatest risk is in the first 2 years (at least from a recurrence at the orginal tumor site). I am 3 1/2 years out so technically I have gotten past the worst of it, statistically.
It's hard not to think about death the older we get anyway, I seem to go to more and more funerals every year (oftentimes for people even younger than me). My dad lived to 92 and never once mentioned to me that he was afraid of dying (and he died of cancer). In practically his last breath he stated "I'm going to beat this" and he did.
Death is inevitable - none of us gets out alive. The future is also not ours - the trick is to stay in the present. Thinking about survival statistics is future tripping.
I think Gary has it right that living in the "now" is a choice that each of us has to make every single day.
When Jack went for his last chemo on Wednesday we found we were literally across the hall from a friend of ours who had been admitted to the inpatient unit and was dying after an 18 month bout with another type of cancer. We spent the day visiting with our friend and his family while Jack's chemo was running. We laughed, we cried, we rolled the IV pole everywhere, we told funny stories of when our children were growing up and when our sons shared an apartment in Boston - and somewhere during that very strange day we said goodbye to our fear as well as our friend.
He died peacefully that night surrounded by love and good wishes. Today at his funeral we all gave him a standing ovation for ignoring the odds and never giving up. He really did beat his cancer because he never allowed it change him.
Perhaps it's not about how we live with cancer but how we live period.
The statistics are meaningless and the hell with them. We have the time that we have, let's make the most of it.
Regards JoAnne
Gary and Joanne,
Just want you to know that I was especially impressed by both of the last statements in your posts. You make so much sense and I hope that your philosophies can motivate others to get on with their lives and live for the present.
Thanks for being here for us.
Jerry
The future is promised to no one, live for today. Living in the moment is a conscious effort. We are always looking at the future and the past. We are thinking about a meal that we will have later in the day, while when are eating one right before us, failing to enjoy the moment we are in. We are constantly reliving past triumphs and hurts. We spend time worrying about things which we have no control over, and negative possibilities which may never occur in our future. Only when we are no longer afraid do we begin to live. I think that there is a universal belief in people considered great thinkers that non-engagement in the moment was wasting what (actually very little) time that was given to us. In my own case I found that a life without part of it spent in service to others was one poorly spent. Essentially that the purpose of life, is a life of purpose. Lives, like money, are spent. The question is; what are you buying with yours? Having given this a great deal of thought while laid up in bed, I tried to understand what people way smarter than me had to say about living fully. Here are a few of my favorites.
And in the end, it's not the years in your life that count. It's the life in your years. Abraham Lincoln
Dost thou love life? Then do not squander time, for that the stuff life is made of. Benjamin Franklin
Security is mostly a superstition. It does not exist in nature, nor do the children of men as a whole experience it. Avoiding danger is no safer in the long run than outright exposure. Life is either a daring adventure or nothing. Helen Keller
You don't get to choose how you're going to die. Or when. You can only decide how you're going to live. Joan Baez
Twenty years from now you will be more disappointed by the things you didn't do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover. Mark Twain
Our care should not be to have lived long as to have lived enough. Seneca
And a more contemporary pearl; from an unlikely source...
Life would be much easier if I had the source code. (OCF Webmaster and computer programmer extraordinaire, Chester)
Personally I believe that life is about living each day with a purpose. Through OCF I have found one of significance to me. If my doctor told me I had only six minutes to live, I wouldn't brood. I suspect I would just type a little faster.....
Great quotes. Both from Mother Theresa and Chester. Thanks for the inspiration in these last posts. Its refreshing to come here and read something that leaves me feeling so good
Wish I could remember where I found this:
"So many people walk around with a meaningless life. They seem half asleep even when they're busy doing things they think are important. This is because they're chasing the wrong things. The way you get meaning in your life is to devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning.
"The truth is, Mitch," he said, "once you learn how to die, you learn how to live. You strip away all that stuff and focus on the essentials. Learn how to die and you learn how to live. . . . It's natural to die. . . . It's part of the deal we made. . . . The fact that we make such a big hullabaloo over it is all because we don't see ourselves as part of nature. We think because we're human we're something above nature. Now, here's the payoff. Here is how we are different from the wonderful plants and animals. As long as we can love each other, and remember the feeling of love we had, we can die without ever really going away. All the love you created is still there. . . . You live on in the hearts of everyone you have touched"
Emerson Quote
"What lies behind us and what lies before us are tiny matters caompared to what lies WITHIN us."
This was the credo I lived by whilst Pete was going through his treatment.
We all need a little bit of inspiration wherever it comes from.
Cheers
Marica
This is the one that continues to give me inspiration...
I beg you
Senator13,
When I first saw that quotation (sometime within the past year), it really struck me. I remembered how many tough questions I had 17 years ago when I was diagnosed and being treated, and how gradually, over the years since then, so many "answers" have appeared that I never could have imagined. I'm constantly amazed at the things that have happened in my life that are somehow related to having had that cancer experience, and I hope that you also find that to be the case.
Cathy
All these eloquent quotes and here is my offering:
The "words" that had the greatest impact on me came from the song Tim McGraw sang when his father was diagnosed with the brain tumor that eventually killed him. The song was "Live like you were dying", and the words are great. Here they are:
He said I was in my early forties
with a lot of life before me
when a moment came that stopped me on a dime
and I spent most of the next days
looking at the x-rays
Talking bout the options
and talking bout sweet time
I asked him when it sank in
that this might really be the real end
how's it hit you when you get that kinda news
man what'd you do
and he said
I went sky diving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named FuManchu
and I loved deeper and I spoke sweeter
and I gave forgiveness I'd been denying
and he said someday I hope you get the chance
to live like you were dying.
He said I was finally the husband
that most the time I wasn't
and I became a friend a friend would like to have
and all the sudden going fishin
wasn't such an imposition
and I went three times that year I lost my dad
well I finally read the good book
and I took a good long hard look
at what I'd do if I could do it all again
and then
I went sky diving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named FuManchu
and I loved deeper and I spoke sweeter
and I gave forgiveness I'd been denying
and he said someday I hope you get the chance
to live like you were dying.
Like tomorrow was a gift and you got eternity to think about
what'd you do with it what did you do with it
what did I do with it
what would I do with it'
Sky diving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named FuManchu
and then I loved deeper and I spoke sweeter
and I watched an eagle as it was flying
and he said someday I hope you get the chance
to live like you were dying.
The other words that ring in my head when I need strength are the ones that were whispered to me, in the dark, by my then 12 year old daughter the night I came home from the hospital. She wanted to sleep with me and she lay there and asked, "Mom, are you going to die"? The desperate need for her to hear me say "no, I'm not" makes me remember how difficult it was to resist the temptation to tell her just that. I found the strength to tell her that I wasn't planning on dying and would do everything I could to stay with her, but that I couldn't promise her that. It took great strength to tell her that.
I'm not quite sure how this thread turned into what it did, but boy have I learned a lot of wonderful quotes. Thank you all for sharing your favorites.
Minnie, thanks for sharing that heartwarming story of how eloquently you answered that most difficult question that your daughter asked you. I'll bet that was harder than getting used to your implants and temporary denture. Hope things are continuing to get better each day.
Jerry
That quote by Rilke and the one by Emerson are two of my alltime favorites (I had both up on the walls of my house (Rilke) and office (Emerson) long before I ever got hit by cancer.
Minnie, your story of talking to your 12 year old daught really touched me too. I'm sure that was one of the hardest answers you've ever had to give but I'm guessing your daughter will remember that much later, maybe when she's a mother, and understand even more deeply your courage.
Nelie
So, after reading all of these insightful quotes and soul searching thoughts, can anyone tell me how to relay this attitude to my husband, who, after having been through what he's been through, continues to "sweat the small stuff." I hear all the time that people who survive life-threatening situations come to appreciate life and want to make the most of each day. I suppose it is unrealistic to expect that a person's whole personality would change. My husband has always been "easily agitated" for lack of a lengthier explanation, and I really wished for him, after having gone through his treatment and learning of the "odds of recurrence" as the topic of this post, that he may have come to realize that he needs to "chill out." I have pointed this out to him at appropriate times (and also some not so appropriate times) but he is not one to have a lengthy or deep discussion and tends to think I am "over analyzing" if I say more than three sentences about anything. Those people who claim to appreciate life more, is it because they already had an appreciation for life, or is it possible to change? Any thoughts?
Michele
Michele,
I believe it's always possible to change, it's a choice that we make. For example, I like control - and I always rationalized that as because I'm so good at it - but I'm not in charge of Jack's cancer it has a mind of it's own. As a result I'm developing an appreciation for living in the now that I did not have before.
By no means do I think this is easy or that I'm where I need to be but I'm trying and that's all we can do. Little mundane moments that we would have blown off before have become very precious to us now.
Change doesn't need to be profound, any little progress is a good thing. It's not an all or nothing phenomena but whatever you can get. Jack didn't want to discuss any of this until very recently. Even now he doesn't say too much but I've learned that just being together is being supportive. Some of our favorite moments these days are sitting in our backyard swing and not talking at all.
Maybe you can't rely this attitude to your husband but you can develop it in yourself and over time he may let some of his fear go too. I've learned that I can't force Jack to talk on my timetable or do it my way and that's a huge change for me after 25 of marriage. The interesting part in our case is that once I stopped talking he started to. Hope this helps you.
Regards JoAnne
Michele, I don't think YOU can change your husband's attitude- he will have to run that base alone. You can share what you believe, what you have learned from this cancer experience and what you hope to see as the life the 2 of you will share going forward. But, in reality, it is up to him to learn how to assimilate and deal with all that he has endured during this. That will not be an easy thing for him to do. And the same goes for you- As a caregiver for someone you love, you have been through Hell and it isn't over yet. You are gonna have to try hard to take care of your own mental and physical health as well. I hope you are strong and I hope if you need help, you will seek it out. I'm pulling for you. Amy
Michelle,
Amy gave you some good advice, you can't change your husbands attitude. Only he can do that.
Caregivers are vital to a cancer patients long journey to being a survivor. It simply cannot be done without the caregiver. With that said, only a cancer patient can understand the depth of emotion we feel during the cancer experience. I always liken it to living in a different world. My husband is the saint of all caregivers, but I still feel as if I live in a different world then he does. He can leave the world tainted by cancer, I can't. It's my world now, I'm the one with the physical effects, emotional scars, etc. When I was having a very emotional time at the end of radiation, I could see that he emphathized with me and felt bad for me, but he didn't KNOW how I felt so he struggled. I could almost feel him wanting to tell me how he thought I should handle it, how he thought I should approach it. I've always given him tons of credit for not doing that. He let me do it my way. Maybe this is simply how your husband needs to deal with it at this time and he just doesn't have the emotional fortitude to try it your way. Even as good as your way sounds!
Hang in there, he will come to terms with it all but it won't happen overnight.
Minnie,
I can't tell you how many times I have played that song over and over when I needed to pick myself up. My family calls it "Mom's cancer song" as in SHUSH, MOM'S CANCER SONG is on. Once I got the all clear from pathology, my family was convinced I was cured and shouldn't even be thinking about it anymore. Kind of hard to do when I still see the doctor every four months! For my husband, that chapter of our life is over and got me to move to Florida. For me, that chapter started my new normal and got me to move to Florida!
Lisa
Lisa,
Are you sure your mom doesn't know my dad?? We are an awful lot alike! The first time I heard that song I knew it would stick with me and it makes me emotional everytime I hear it. My kids are like yours, they label stuff "Moms cancer thingy", like when I did the Walk in 2004, it was called "moms cancer walk". They have gotten to the comfort level of even describing events as BC and AC, meaning before cancer and after cancer. my 14 year old was trying to help her 15 year old sister remember something and she very casually said "it was before moms cancer". In a twisted kind of way, it does make our kids not fear cancer as much to see us surviving it so well!
Keep on keeping on Lisa, I'm going to get down there and meet you someday soon.
Minnie
Thanks, all - maybe I am the one who needs to chill. (herson, what did you mean by "hmmm"?) Actually, I guess I had an expectation that my husband would come through this and not want to waste time being upset about little things, which is how he was before the cancer, and how he still is. I guess that is what I thought would change in him. Maybe that doesn't make sense. I know I cannot understand how he feels internally, and I try to be supportive and offer help without insinuating how I think he should feel or be. I just really want him to enjoy life at this stage he is in right now, which I hope is permanent, because he is finally starting to feel halfway decent, and since the "odds of recurrence" are high, I want this time to be a peaceful time. Not a time of arguing about whether there is enough room to put stuff away in the fridge after a family cookout, why do we have so many sodas in the cooler, and so on. Thanks again for your insights.
Michele
Hi Michelle,
It's perfectly normal for you to hope your husband will respond a certain way, don't be hard on yourself about that. He simply needs some time to wrap his mind around all that has happened. Keep in mind that, for many of us, the MOST fearful time comes when we DO start to feel better after treatment is over. During treatment we are weak and focused on simply making it through the day, not much thought given to tomorrow. We also have a sense that we are fighting the disease actively, ie. raidation, chemo. When treatment is over and we begin to feel better and heal, so does our mental state. All of a sudden we feel well enough to be scared sh*tless!! And the scariest part is that we're not doing anything on a daily basis to fight this disease, we simply feel like we're sitting and waiting for it to come back. I know that thought took over me for awhile.
The worrying about things like an overcrowded refrigerator may be his way of venting his frustration with his fear and his still weak physical and emotional state. I used to tear up and cry about the stupidest things. I also had a strong instinct to NOT let my family see my fear, so sometimes it showed itself masked as my anger. It's alot for both of you to absorb, just take it slow.
Minnie
Michele, you just gotta take it one hour at a time. Amy
Michele,
The change in outlook that I experienced was definitely NOT something that happened overnight as soon as I finished treatment. It happened in small steps, month-by-month (even year-by-year) and only became really apparent to me as I had the benefit of time to reflect on what had occurred. I think that's one reason why I was drawn to the Rilke quote that's included in one of the previous posts.
Cathy
WOW!!
I just had to stop by because I was thinking of all of you today. I got an email that had the following often repeated story. As I read it, I came to realize that all of you have been my BIG ROCKS for quite a while and after reading this thread, I also realize how much I miss all of you. I hope you, too, enjoy this:
Rocks, Gravel, and Sand
One day an expert in time management was speaking to a group of business students and, to drive home a point, used an illustration those students will never forget.
As he stood in front of the group of high-powered over-achievers, he said, "Okay, time for a quiz." He pulled out a one-gallon, wide-mouth mason jar and set it on the table in front of him. Then he produced about a dozen golf ball-sized rocks and carefully placed them, one at a time, into the jar. When the jar was filled to the top and no more rocks would fit inside, he asked, "Is this jar full?" Everyone in the class said, "Yes."
Then he said, "Really?" He reached under the table and pulled out a bucket of gravel. He dumped some gravel in and shook the jar causing the gravel to work themselves down into the spaces between the big rocks. He then asked the group once more, "Is the jar full?" By this time the class was on to him. "Probably not," one of them answered.
"Good!" he replied. He reached under the table and brought out a bucket of sand. He started dumping the sand into the jar and it went into all of the spaces left between the rocks and the gravel. Once more he asked the question, "Is this jar full?" "No!" the class shouted.
Once again he said, "Good." Then he grabbed a pitcher of water and began to pour it into the jar until it was filled to the brim. Then he looked at the class and asked, "What is the point of this illustration?"
One eager beaver raised his hand and said, "The point is, no matter how full your schedule is, if you try really hard, you can always fit some more things in it!"
"No," the speaker replied, "That's not the point. The truth this illustration teaches us is: If you don't put the big rocks in first, you'll never get them in at all. What are the 'big rocks' in your life? Time with your loved ones? Your faith? Your education? Your dreams? A worthy cause? Teaching or mentoring others? Remember to put these BIG ROCKS first in your life or you'll never get them in at all. So tonight, or in the morning, when you are reflecting on this lesson, ask yourself this question: What are the 'BIG ROCKS' in my life? Then, put those in your plan first."
I love you like family!
Ed
I love that story. What great advice and makes so much sense in todays world where we often worry about the sand first. I think(I hope) that one will stay with me...Thanks ED!
Thank you Ed- wise words for all of us. Amy
Senator13, thank you for that quote, it is the first time I have read it.
to all the others: what a beautiful thing this thread has turned into. I believe some of this should end up in the "project". Tom what do you think?
Michele, re-read the quote by rainer maria rilke:
I beg you
SSAX,
The quote is from Tuesdays with Morrie by Mitch Albom.
Mark is right, this has turned into something special. This has been a bad week for Jack with multiple complications and the thougts expressed here have kept me going. I'd like to add my favorite quote by Louisa May Alcott - "Far away there in the sunshine are my highest aspirations. I may not reach them but I can look up and see their beauty, believe in them, and try to follow where they lead."
Every day is another chance to try again.
Regards JoAnne
Aimmee,
I was stage 2 clear margins no lymph node invlovement lost 3 back teeth and hoped for the best. Unlike you my ENT gave me no statistics, the only thing he said is the closer you get to 1 year with no recurrance the less chance you will have to have radiation. I have spent many years living from MD appt to MD appt. after my surgery last year I was determined to do all the things I have been wanting to do for a while but couldn't plan due to always haveing a surgery. It is something I think about all the time but don't let it rule your life (or try not to)The first few months after surgery are the freest I ever felt. Don't pay attention to what numbers say, everyone is different and every case is different.
Aimee,
I also had T2N0M0 and had surgery only with clear margins, no radiation. That was January 2005. March of this year I noticed a very small sore at the same site, a very early recurrence and again had partial glossectomy with large clear margins, again no radiation. I do worry but am followed closely and am comfortable with my decision to not have radiation. Minnie's Tim McGraw song is also a favorite of mine and the cancer made me realize I need to do some of the things I've always wanted to do and quit putting them off so I took the big leap of faith and went skydiving last September. (tandem jump-I'm not brave enough to go solo-yet) I might have put this off forever if not for the cancer. Best wishes to you. My doc never gave me quotes for recurrence rates. -Susan
When I was first diagnosed inlate sept of 2205,I was scared out of my wits, stage 3 tonsil that had spread to one lymph node. My ex-wife who is a 16 year survior said it best, "more people live from cancer than die, and they have better treatment today than they had yesterday. I have kept those "statistics" close to my heart and have convinced my self that I WAS and AM going to be one of those who survive. Now I am not so nieve to think that is all it takes, there is alot of "luck of the draw" involved as well your care both by your doctors and your self. As you can see I am not out of the woods , time wise, by a long shot and have went through radiation, chemo, modified neck dissection and even 39 HBO treatments. My doctors thing I am doing great, I feel great today and hope that I do tomorrow. Best of luck to all and to hoping that you get dealt one of the lucky hands and win this battle, those are the best statistics you can get the rest are worthless in my book.
lenny
Stage II, margins NOT clear, no lymph nodes, treated with radiation and chemotherapy at Dana Farber. Would you believe my oncologist said 99% cure rate? I think I will believe him!
The important thing is to make the most of the present and not worry obsessively. The latter will affect your physical (as well as mental) well-being.
When my husband went to a head/neck cancer patient education forum at Hopkins last April, he was upset by some there who had made it through treatment and were (more or less) OK but were still lamenting their "bad luck" and saying they could no longer enjoy their lives as they were so consumed with worry about the cancer coming back. Barry got up and made a little speech about how he was grateful for the good care he had received, that he was not looking back any more but was planning to enjoy his life -- that he could not waste any more of his time worrying about this disease -- but was more concerned with where our next trip would be to!
No one knows what the future may bring, but you might as well embrace it!
Hey, we got chased by forest elephants in Uganda and had to spend a long cold night out in the Impenetrable Forest in the pouring rain because our guide got lost -- let me tell you, that sort of thing puts things in perspective very quickly. Life is an adventure and who knows what is in store!
Gail
I love this page and the people here but sometimes i get scared all over again. I had surgery 4 months ago. See the stats below, no radiation, no chemo and i did not ask about stats. I was told I was cured and the recurrance was extremely slim. I went to my follow ups as much as I was scheduled and only missed a month since my insurance lapsed.
I was elated and so very excited about being "cancer free". Maybe too excited. Maybe I should be doing more. I was so happy about my outcome but now I read all that I'm reading and think maybe I am being gullable and naive. oral cancer is no joke and very serious.
Hi Thomas here. I had radiation in Dec. 05 / Jan. 06. For me it was the right thing to do. In Feb. 05 I had day surgery to have a small tumor removed (T1N0M0) from the right side of my tongue. No radiation then.
Over the summer of 05 it grew back. I had an other bi-opsy in Sep. 05 witch came back positive. I had the big surgery in Oct. 05 (see my write up in "Introduce Yourself" happytobealive) I ask my doctor
if I would have gone for radiation after my small surgery in Feb. 05. Would that have prevented the big one in Oct. 05 (T2N0M0). My doctor said YES for sure. Without the radiation I had between 0 and 40% change
for this thing to come back, and with the radiation between 0 and 5% change.You do the math. This is a no brainer! Some people get off easy, and I was one off them. Yes I had the burns. Yes I lost
50% of my saliva, and yes I lost part of my taste (witch has come back). So it is not the end. I wish everyone lots of luck, and health. Thomas in Calgary AB.
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Reoccurrence ... is a important stat to look at .. and yes .. it does look like reoccurrence does occur ..
I think more importantly is to look at how and why reoccurrence happens.. in some cases the reoccurrence does not even happen in the same spot. In my mom's case the cancer went from the tongue, then developed in the neck and also her lungs. In this case, the tongue is not related to the neck or the lungs.
The answers I find and the causes for reoccurrence .. is not enough in my opinion
Good luck and well wishes to all on the board, and thank you to Brian, who does such a great job in monitoring and professionally keeping the board going. I now have only a few months cancer free from a second tongue cancer this summer. The first was 7yrs. ago. I was told then by my Dr. who still works with me, that we do not know what will happen as far as recurrence. But that I must never smoke or drink alcohol. Since 2000, I have not had so much as a puff or a sip of alcohol. I still had a small recurrence. I am lucky it was caught early and a surgery was done without chemo or radiation. The main thing with oral cancer is VIGILANCE! Checkups are a must, along with constant self care.
So much in life is out of our control. I try to live in the now, and enjoy what I can each day. Cancer has affected just about every area of my life, but I am lucky to have a life today...Be Well to All!
Gerry
Our sincere thanks to the Oral Cancer Foundation and all of you for your information and support. You have been a great blessing to our family. Aimee has left a donation in her will, and donations will be requested in her obituary.
With deep gratitude, Aimee's family
I am so sorry about your loss. Deepest condolences to you and your family. I went back and read Aimee's past posts and was so disheartened that someone so young could be hit so hard by this disease.
I'm so sorry for your loss; our prayers are for you, your family and everyone who has to deal with this disease today.
Tim
Deepest sympathy at this very very sad time.
liz