This will sound depressed and morose, but I really mean it to sound practical and sensible. How long should we fight back? It takes enormous energy, time and way too much money. Even after my insurance paid last time, I owed a fortune. The fight is so hard on the family, especially on my wife. Are we just feeding the medical monster by fighting with our last dollars and breath??!!

Yes, I got to meet my 3 grandchildren, I got to go back into the classroom and teach, I got to counsel a little more, I got to do some writing. All wonderful and worth the fight. But there are losses too. I am without my sense of taste, my sense of smell and my ability to swallow. My teeth are gone, my neuropathy in extremities continues and my balance is bad as a result. I can't ride my bike. The chemo stole the calcium in my bones so now I have osteoperosis and can't "risk" many of the activies I used to love. My peg keeps me from swimming or hot tubbing - two things I really miss. New normal? Sure. Can I live with those limitations? Sure. Have I had a wonderful time in the past 4 years the treatment made possible? Absolutely.

But what else can I afford to lose to another round of treatment? What else am I willing to give up to be alive? I don't know. I'm not preaching - just sounding off. I'm angry about it. Another round of treatment will drain the last of my retirement money. Whenever I eventually die my wife will get nothing. Not exactly what I saved for. What price to pay for each additional day? What amount of pain endured, stress endured, stress given to those around me?

Dying by inches. I remember my step-dad telling me how he just wanted to leave now. He was dying of emphzema. A big, robust man who loved life - reduced to a coughing, vomiting weakling. He tried to overdose but failed. We talked when he got home from the hospital and he said he couldn't stand to die by inches. "There is no dignity in this." he said. I didn't get it then. Life is precious. Life at any price. Now I understand what he meant.

When people close to us die we keen and cry and miss them. We wear black. We have a funeral. Lots of Kleenex. Then the sun comes up again. Some guy gets a flat out on the interstate, there is a new baby camel at the zoo, the gas bill needs paying, and somebody has to scoop the snow off the sidewalk. The news changes, the weather changes. Life goes on. There is barely a ripple left from your passing through.

In twenty years you are just a name on a marker. Does it really matter what day you die? Does it really matter then how hard you fought? that you lasted one more week or one more year?

No, I'm not looking for a bridge to jump from. I'm just angry and trying to make good decisions about what to do next. Give it a fit for three months and then re-evaluate? Go after it till my bank account gurgles and then quit? Stay with it till I lose 2 more human functions, then find a bridge?? Give my money and goods to the medico's till I am broke and then die of pneumonia sleeping on the corner of 3rd and Main streets? Interesting choices. Dark and whiny, but interesting.

Yes, I know this has been discussed before, but do again for me. Does anybody else ever have these thoughts? What happens when poor people get sick? There weren't any poor people in our chemo rooms, I can tell you that. I feel a little foolish posting this blog, but I do feel a bit better. Tom J

Dear Tom

i know where you are coming from sweetheart,and i know this post is going to illicit some fierce replies,not least from those who are fighting this disease with everything they have got,but like you Robin was concerned with quality of life,not quantity,and if he had known the path his illness would take him i can tell you straight ,he would NEVER had taken it.The temporary loss of his normal functions he could have tolerated i think,but when it went on and on ,he got angry and frustrated.The terminal diagnosis was the last straw and he was bitter and resentful that the last months of his life were spent being fed down a tube, losing his voice,losing his taste,his strength and his joy de vivre.For the first time in his life he was reliant on state benefits which he was ashamed of,and silly as it may seem to some ,the loss of his ability to "perform as a man" upset him so much he cried.

On the other hand i would have done anything to keep him with me no matter how he had to live,and that is selfish.
Some here will say you are wrong to feel as you do and that life is precious and you should fight to the end,having watched Robins demise i dont agree,and more to the point Robin and i talked about this at great length and it gave me a better in sight into how HE felt.

Bottom line Tom this is a decision only you can make,and you should talk to your family about it,who knows,they may feel the same as you,and fully support you if you decide to have no more treatment.They may cry and beg you to fight it but if you tell them where you are coming from and your reasons why you are reluctant to go on with more treatment,they may just understand.

I must disagree with your analagy about your impact on this world and how it will effect the ones left behind.
My father died 28 years ago and not one day goes by that i dont miss him,and regret the fact that my children and grandchildren didnt have the benefit of his kindness and wisdom,but they have his genes so i guess that will have to do.

As for losing my young husband,i cant even go there.
At 53 i see no future,life is cold and empty and my heart aches with a pain that even my two beautiful grandaughters cant heal.At the end of the day when the front door shuts there is no one but me,it is empty of any sound except the television,and when i put the lights out and climb the stairs it is to a dark loveless room where all i have is my memories that at the moment are too painful to bear.

It will take a lot of working out Tom,and i hope whatever you decide is right for you and your family.

I dont envy you the place you are in right now but hope you will get some solace from the people here who know better than me where you are.

much love liz

Dear Tom
I hardly ever post here, but after reading your post thought I'd add my thoughts, although, not advice, I promise!
I am a 37 year old mum of a 10 year old daughter. I am very happily married, loved my job as a secondary school teacher, delight in my family and friends and felt blessed, until November last year when I was diagnosed with squamous cell carcinoma of the tongue - stop me if you've heard this one before!
A year ago today I had my operation, free flap from arm to tongue, etc, etc, lymph nodes whipped out (2 affected( chemo/radiation to follow and after months of recovery day by day, I was thrilled to be back at school in September, teaching again. Two weeks later and a routine scan showed multiple mets to my lungs.
You'll know only too well the horror of this.

My doctor was and remains fairly ambivalent about the point of pursuing chemo as a means of trying to stop/slow this, (despite it being, as a basic treatment, paid for by the UK NHS) We pressed ahead regardless and I am about to have my 3rd treatment - so far so good, although no idea if it's having any effect!

I realise I am rambling, but my thougths are that nobody can really say when/if/whether to 'fight' or even what that means for each of us.
I realise that in the States there are often huge financial issues to take into account as well. Here in the UK there are different rules for each NHS hospital and I am only too well aware that decisions are often made here about treatment options based on cost to the hospitals - we have already offered to pay for any available treatments (begging and borrowing if necessary!)
Some days I feel like I can carry on dealing with this indefinitely, but some days I am troubled with doubts. At this stage I am not in pain and other than a slight ache in one shoulder, no symptoms, so I suppose it's fairly easy now; I know that this may not always be the case...
I am trying to follow that old cliche of 'one day at a time' remembering who I am underneath all this medical nightmare. It's strange, but sometimes I think that I am less scared than I was this time last year - the worst has happened, so it changes the fear, I think - at least for now.
So today's plan for laziness is:
finish mooching here; a little internet Christmas shopping; quick tidy round the house; stick my head out into the rain and decide whether to go out or not (probably not as it's hammering it down at the moment); finish reading my current book; maybe a snooze/ listen to my meditation CD; look lively around 4pm as if I have been as busy as a bee all day, when husband and daughter arrive home!
Tomorrow I am out all day with my best friend, for lunching, laughing and shopping - all of this nonsense is enough for me now to say that I am determined to carry on carrying on - beyond that? We'll see - like Scarlett O'Hara - I 'll think of that tomorrow...(or maybe next week..)
I also feel a little foolish as I read back my post, but better too. I'm sure that you'll continue to do whatever feels right for you. I wish you all that you wish yourself,
Georgia

Tom - I have not been where you are but I have to agree with Liz about the impact you have on this world and how it will affect the ones left behind. You have already made a huge impact on me with just this one post. No one can understand better than you and Liz and Georgia and so many others here, the horror of this disease, how it takes so many and affects their families and countless others. I cannot help but feel that the experiences and genuine feelings shared here will have an impact on how we make decisions regarding this disease, its management, research and maybe even the insurance companies who seem to hold all the cards. Your comment about

The time scale you use makes all the difference as to whether you view yourself as a ripple passing through I think. Ultimately, we all are just ripples. But you also never know how you affect the future indirectly. I bet those grandkids of yours, Tom, if they get old enough to keep a memory of you, will treasure it years later as adults. And wonder and want to know more about you. Right now, I'm reading a journal written by the great great Aunt I was named after--who went out to the trenches and entertained the troops with her husband in WWI. Her life overloapped with mine by less than a month. When I was born she was extremely ill with cancer but reportedly overjoyed that the first child of the next generation had been named after her. Thinking about her courage during the war and the independence she showed for a woman of her age has influenced me. Even though we never got to know each other in person.

Now, having said all that, I do know exactly what you're saying here and yes, I have thought about it though I know it would take a lot more of my thought if I got a recurrence. I don't want to spend all my retirement savings as well as money I don't have but someone else might have to repay on a treatment that might buy me a few weeks of low-quality life. There comes a time when I think I would rather make my peace with impending death and say "enough". When that time is is something I hope I will know when and if I get there (I could always get in an accident and have no time at all). I hope you will know it when it comes too.

Nelie

As a caregiver I would try to support any decision my husband made.
As a wife it would be darn hard but would NEVER want to see him suffer.
Maggie

Tom: Dont plan on going anywhere soon. I read your post and so much of it resonated with me - words I couldn't find and/or didn't want to think about.

Your comment "What happens when poor people get sick? There weren't any poor people in our chemo rooms" brought tears to my eyes...what a cruel place this world is sometimes.

How I wish I could talk to you. You say so many of the things I think about. I would suggest that you are far more valuable to this planet than you give yourself credit for...look at how your words have impacted others.

Donna

There were poor people in the chemo room I was in. But those people were getting treated partly as charity cases, I have no doubt. A nurse practitioner I saw there (at my MO's office) told me once how lucky I was that my insurance covered the Jevity I was using to tube feed myself. She said she had another pateint on Medicaid and food stamps. The medicaid refused to cover the prescription tube food because they said they didn't cover food. But the food stamps office wouldn't cover it because it was medical supplies.

This was someone without an extra penny to her name and fortunately radiation medicine at the hospital gave her stuff they had got like boost and ensure to hand out to patients and that's the only way she got through.

I wasn't treated at a CCC, which may also be the difference in whether you "see poor people in the chemo room". I have to say my impression of the very very good hospital I have gone to in Boston for help with esophageal strictures is you see a lot more middle class and wealthy patients there. Not all by any means but, especially the ones that come from some distance, like me, are certainly not among the poor.

This is really a good discussion Tom and I agree with the others that just your ability to make us think and respond to these issues speaks to how valuable you are in this world!

Nelie

Petey. I never met him, and he only posted here on the forum for a short while. I felt like I had known him my entire life.

The impact that he had on an untold number of people during his illness and even in death, cannot be measured. I'm not sure if anyone on the forum ever met him, but everyone loved and respected him. If this ONE person could impact so many that he didn't even know personally, then how much MORE can one person impact another if they DO know one another.

It is my belief that EACH one of us has a specific purpose on this earth. I don't know why some of us survive and others, seemingly more deserving to live, die. I don't understand.

It is also my belief that the decisions you are contemplating are yours and yours alone. I wish that I could express myself more clearly.

How will I feel if I am ever in that position? Or, what if Buzz were to need to make this decision sometime in the future?

To someone, you're their whole world. You're unique, special, one of a kind.

I'm sure you'll make the decision that is right for YOU and your loved ones.

I will certainly be thinking of you, as you face this trial.

Lois

Tom

I sit here and read your post and cry. I cry for so many reasons. I think about the people I have lost and the impact they have had on me . The Hell I have gone through in the last year , the Financial BURDEN I have caused my family in the last year. The fear of doing it again .

I understand what you are saying , And as Much as somtimes I want to say I wouldnt want to go through the half of it again ..I dont know for me it it would be fair , I am a 36 year old mom of 5 . Is it fair to them ? I dunno , But is it fair to them that I am struggling to put food on there table and let them keep up with the Sports and dance , because This DAMN DISEASE has cost us sooo much !! And my health kinda spiraled a bit after.

I am not considered "poor" enough to get help. But I sure am not well off enough to survive . I just went back to work ( had a total hysterctomy 8 weeks ago and back in a couple ago to have some things FIXED Inside ) and I am trying to work 2 jobs, coach school teams, and run kids to sporting events and help out and the Dance studio. Am I going to run myself down ..I have NO IDEA .....I don't know what to do anymore , would they have been better off , if things would have went differently ....and then the bills would have stopped and all , the kids would have been sad and always been sad , but not been under this stress and suffering .

I think only we know what we can do and we need to talk to our families and let them know are feelings. I am glad I am here and I am ok . I just wish I hadnt put my family in this position.
Specially hard this time of year. I hate myself for it .

I hope that you can search inside your self Tom and find the answers.

Shar