I expected too much..

soccerfreaks said:

cowboy up
I do not mean for this to be mean-spirited, although it may be taken that way by some, but if it is mark's intent to give himself the best chance for success, he needs to pick up his game, in my humble opinion.

I had a 15-hour surgery to take out my head/neck cancer, which included making a furrow in my left arm, from near the wrist to the elbow, so that they could get to the nerves they were going to transplant. They split my face open in order to 'transplant' the new part of tongue and the nerves, and they did a radical neck dissection.

This was followed by four days of induced coma and an additional two weeks in the hospital. When I got home, the first thing I saw as I walked through the front door was the pumpkin-headed stranger in the hallway mirror. Me.

Shortly thereafter, I began a round of 35 radiation treatments (I completed 33), of between 30 - 45 minutes. During this time, I was bolted down to a table, my hands were tied to my sides and my feet were strapped to the bottom of the table. I happen to be claustrophobic to some degree. And, during this time, I received three or four rounds of cisplatin (chemo).

AND during this time, while waiting to go in for rads one day, they advised me I would be bumped for another customer. I am not the most patient person at times and I am especially irritated by what I perceive as misjustice, so my dander was getting up there until they rolled the little boy past me on his gurney, not much more in weight than what you would expect of an Ethiopian refugee, no more than five years old, but with the largest smile in the world, looking forward to some time with his pretty nurses.

If I did not know before, and I think I did, but if I did not, I now knew that no matter how badly you think you have it, someone has it worse. No matter how tough you think you have it, someone has it tougher.

Mark needs to cowboy up. Being tired is not a good excuse for avoiding future treatment, especially when the doctor you purportedly trust is recommending it.

Mark needs to man up.

As for his behavior, I am sure that a great many of us will acknowledge that we acted the same way or are acting the same way even now if still in treatment. Perhaps some of this is physical, a product of fatigue and nausea and so on, but I believe that much of it is mental, the result of enormous stress and the particular pressure/tension that comes from visiting the hospital or the doctor's office for tests, treatment, results. We cannot lash out at the disease, so we lash out, regrettably, at our loved ones.

If he has not already, your husband is likely to express a wide gamut of emotions, many of them negative, anger, fear, depression, resignation, resentment, even entitlement, a dangerous thing at times.

But he can get through it. The proof is in the proverbial pudding that is all of the people here who have managed to do so and are around to provide support, some of them from more than 10 years out of treatment (I am now 'all clear', a five years+ survivor of head/neck cancer, 3+ years survivor of lung cancer).

It can be done, it is done more frequently all of the time, but Mark has to man up.

And you have to do your best to continue understanding that he will have his moments.

Best wishes to Mark and his family.

Take care,

Joe

Joe
That is a very powerful post Joe and I really hope his wife reads it to Mark if he won't read it himself. I haven't been in your shoes but you have been through a lot and you are an inspiration to all of us. Please Mark, heed Joe's words. I feel that they are very important and probably essential for your progress against this awful disease. Diane

soccerfreaks said:

cowboy up
I do not mean for this to be mean-spirited, although it may be taken that way by some, but if it is mark's intent to give himself the best chance for success, he needs to pick up his game, in my humble opinion.

I had a 15-hour surgery to take out my head/neck cancer, which included making a furrow in my left arm, from near the wrist to the elbow, so that they could get to the nerves they were going to transplant. They split my face open in order to 'transplant' the new part of tongue and the nerves, and they did a radical neck dissection.

This was followed by four days of induced coma and an additional two weeks in the hospital. When I got home, the first thing I saw as I walked through the front door was the pumpkin-headed stranger in the hallway mirror. Me.

Shortly thereafter, I began a round of 35 radiation treatments (I completed 33), of between 30 - 45 minutes. During this time, I was bolted down to a table, my hands were tied to my sides and my feet were strapped to the bottom of the table. I happen to be claustrophobic to some degree. And, during this time, I received three or four rounds of cisplatin (chemo).

AND during this time, while waiting to go in for rads one day, they advised me I would be bumped for another customer. I am not the most patient person at times and I am especially irritated by what I perceive as misjustice, so my dander was getting up there until they rolled the little boy past me on his gurney, not much more in weight than what you would expect of an Ethiopian refugee, no more than five years old, but with the largest smile in the world, looking forward to some time with his pretty nurses.

If I did not know before, and I think I did, but if I did not, I now knew that no matter how badly you think you have it, someone has it worse. No matter how tough you think you have it, someone has it tougher.

Mark needs to cowboy up. Being tired is not a good excuse for avoiding future treatment, especially when the doctor you purportedly trust is recommending it.

Mark needs to man up.

As for his behavior, I am sure that a great many of us will acknowledge that we acted the same way or are acting the same way even now if still in treatment. Perhaps some of this is physical, a product of fatigue and nausea and so on, but I believe that much of it is mental, the result of enormous stress and the particular pressure/tension that comes from visiting the hospital or the doctor's office for tests, treatment, results. We cannot lash out at the disease, so we lash out, regrettably, at our loved ones.

If he has not already, your husband is likely to express a wide gamut of emotions, many of them negative, anger, fear, depression, resignation, resentment, even entitlement, a dangerous thing at times.

But he can get through it. The proof is in the proverbial pudding that is all of the people here who have managed to do so and are around to provide support, some of them from more than 10 years out of treatment (I am now 'all clear', a five years+ survivor of head/neck cancer, 3+ years survivor of lung cancer).

It can be done, it is done more frequently all of the time, but Mark has to man up.

And you have to do your best to continue understanding that he will have his moments.

Best wishes to Mark and his family.

Take care,

Joe

Joe said it perfectly...
Please read Joe's post to your husband and MAKE him listen!!!

Treatment is tough, no one will disagree, but the end results are why we all struggle through them. I received radiation and chemo for laryngeal cancer and upon finishing was immediately treated for lung cancer. I was exhausting to put it mildly and I had the usual side effects, no easier yet no harder than anyone else here but I would do it all again in a heart beat because I am ALIVE. I wake up every morning thankful that I went through HELL to get where I am today. I'm able to enjoy my family and friends for another day but only because I received the treatment.

Mark's anger is not uncommon and I doubt that it's because the cancer has spread or the end is near. He is angry at the cancer and himself but unfortunately you are taking the brunt of his anger just because you are there. It doesn't matter how much you love someone, when you are hurting or not feeling well you always take it out on the person closest to you.

Please tell Mark to reconsider the chemo. It's powerful stuff and he may feel miserable but he will only feel that way for a short time. After treatment he will see that each week he is improving and life will be even better because he's still there with you.

My best to you and Mark,
Glenna

soccerfreaks said:

cowboy up
I do not mean for this to be mean-spirited, although it may be taken that way by some, but if it is mark's intent to give himself the best chance for success, he needs to pick up his game, in my humble opinion.

I had a 15-hour surgery to take out my head/neck cancer, which included making a furrow in my left arm, from near the wrist to the elbow, so that they could get to the nerves they were going to transplant. They split my face open in order to 'transplant' the new part of tongue and the nerves, and they did a radical neck dissection.

This was followed by four days of induced coma and an additional two weeks in the hospital. When I got home, the first thing I saw as I walked through the front door was the pumpkin-headed stranger in the hallway mirror. Me.

Shortly thereafter, I began a round of 35 radiation treatments (I completed 33), of between 30 - 45 minutes. During this time, I was bolted down to a table, my hands were tied to my sides and my feet were strapped to the bottom of the table. I happen to be claustrophobic to some degree. And, during this time, I received three or four rounds of cisplatin (chemo).

AND during this time, while waiting to go in for rads one day, they advised me I would be bumped for another customer. I am not the most patient person at times and I am especially irritated by what I perceive as misjustice, so my dander was getting up there until they rolled the little boy past me on his gurney, not much more in weight than what you would expect of an Ethiopian refugee, no more than five years old, but with the largest smile in the world, looking forward to some time with his pretty nurses.

If I did not know before, and I think I did, but if I did not, I now knew that no matter how badly you think you have it, someone has it worse. No matter how tough you think you have it, someone has it tougher.

Mark needs to cowboy up. Being tired is not a good excuse for avoiding future treatment, especially when the doctor you purportedly trust is recommending it.

Mark needs to man up.

As for his behavior, I am sure that a great many of us will acknowledge that we acted the same way or are acting the same way even now if still in treatment. Perhaps some of this is physical, a product of fatigue and nausea and so on, but I believe that much of it is mental, the result of enormous stress and the particular pressure/tension that comes from visiting the hospital or the doctor's office for tests, treatment, results. We cannot lash out at the disease, so we lash out, regrettably, at our loved ones.

If he has not already, your husband is likely to express a wide gamut of emotions, many of them negative, anger, fear, depression, resignation, resentment, even entitlement, a dangerous thing at times.

But he can get through it. The proof is in the proverbial pudding that is all of the people here who have managed to do so and are around to provide support, some of them from more than 10 years out of treatment (I am now 'all clear', a five years+ survivor of head/neck cancer, 3+ years survivor of lung cancer).

It can be done, it is done more frequently all of the time, but Mark has to man up.

And you have to do your best to continue understanding that he will have his moments.

Best wishes to Mark and his family.

Take care,

Joe

Good job.
Medi

KLScoville said:

You are also right
Hey,

I am going to ask the oncologist today if we have mets to the brain. I think this has happened becuase of the way he has been acting. He is having a hard time remembering simple items for example he couldn't remember what black olives were called...Black Olives I reminded him about 4 times. Among other things, attitude and actions are....how do I say this?....a bit odd for him.

Thanks for the thought, you reminded me to ask the onc today.

God Bless you too!

Thanks for listening!
~Kelly

I understand what you are going through...
Kelly,

I am so sorry to read what the beast has done to you and your husband. My beloved husband was diagnosed with extensive small cell lung cancer last April, and passed away in December. We were married for 29 yrs. and 10 mos. He was also a mild mannered man, not to say he was weak but just took things in stride all of our life together.

He never was able to accept the prognosis. He believed that as a man he should fight it to the bitter end, take all the chemo and radiation offered to him. As he said to me once, "I will take chemo on my last day of life if they give it to me!". It almost happened that way, but he was not able to. He passed away the Monday that he had been scheduled to begin Topetican.

At the time of diagnosis, he understood that there was no cure, just treatments. What he really didn't get was that the treatments were to hopefully extend his life with "QUALITY". He wanted a miracle, to be healed, to be cured. He wanted to be the "one in a million", that for unknown scientific and medical reasons, beat the beast! Of course, I wished for that also, I wanted him to live forever, to never leave me.

As the time passed, quickly, I may add, and the very short time that chemo (first-line) did some good, the cancer spread to his bones, and the second-line chemo damaged his liver further, it began to be clear to me, that he was deteriorating and that "forever" would be coming to an end for him, for us.

He had received PCI (prophylactic cranial irradiation), and that really was the beginning of the end, as it made him so fatigued that depression really set in then! Making the decision to get PCI was one of the most difficult things ever. On one hand, they know that this cancer loves to move to the brain, so by giving you PCI when you don't have mets there, they hope to "buy" you more time before you do. You have a 5% chance of not getting it there too fast. When you are fighting for your life, any percentage sounds good! But it ended up taking away quality of the short time he had left, and somewhere inside of me I think if you could ask him now, he would say he wouldn't do it again! But when he, we decided on it, we said we would never second guess our decision.

Every chemo, every treatment, you are offered feels like a life preserver they are throwing at you, you're drowning, so you grab for it. When he began to go down, I also felt he wasn't trying hard enough. I would read what so many others here had gone through and thought, surely, you can try harder! What hurt me the most was his denial of the big picture. He became withdrawn, did not share what he was feeling. For all of our marriage he always did his best to communicate with me. To let me know how he felt. That stopped the last 4 months of his life. And it hurt!

In November, I began to realize that the battle was not with the cancer anymore, but with our saying good bye, with our living, laughing and loving the best and most we could. The miracle we had prayed for was not that he would be cured, but that the time that had been given to us be spent in the most beautiful of ways. Even with meds for depression, he was never able to accept, deal and live with the cancer. He also was seeing a wonderful therapist, but even she could not help him come to a peaceful place about the possibility of him dying. He had been given time to say and show love to us, but the denial would not allow that. After all, if you think you are not going to die, why prepare for it?

Your husband may still be in the "game" as they say. There may be options that offer realistic outcomes. We must remember that each of us are unique and are affected differently. Perhaps if he sees how much you love and need him, he will opt to receive further treatment. And I am sure you show him how much you love and need him, but maybe give him a little space, and let it be his decision.

My hope and prayer for you is that whatever the outcome, that you both find a peace in the decisions, that he knows your love for him, and that you know his love for you. I wished to share this with you, as there are always "more sides to a situation". None of this is cut and dry, black and white...

Best Wishes,

Lucy

KLScoville said:

Thank you Lucy
Lucy,

I am sorry to hear what you and your husband went through, may God Bless you and your family!

Unfortunately my husband is ready to die. What an attitude. He walked down the hall at the doctors office before he was dx'd. The nurse asked "how are you feeling" and he (loudly I might add) "not bad for a dying guy". Also he is asking the onc and rad onc if they know Dr. Kovorcian (sp?), doctor death. I just shake my head at his comments.

He does make all the medical decisions while he is capable to. I have medical poa when the time comes. This was decided when he pulled the stunt of not taking his insulin last weekend and ended up in the ER then ICU. "Mark, you have to take care of yourself being a diabetic" is what was told to him. By me a few thousand times and once by a doctor. Guess who he is listening to now...not me of course. Again another head shaking moment. We have a great relationship and like I said before. I don't take this personally.

Thanks for listening!
~Kelly

A comedian!
My husband also had a wonderful sense of humor! But mid-way through our life together, I realized that many times he would escape or not deal with reality by "cracking a joke"! Something I would find somewhat annoying at times.

His Onc figured him out very soon into their relationship and for the most part, went along with it. I can remember a few times though, that she actually told him that the topic at hand was important and she needed for him to acknowledge his understanding of it and give her his real feelings about it!

What must go on inside of a mind when having to face such alarming news? I know, only from my perspective. Fear? Anger? Sadness? And in our husband's case, worry. Worry as to what will this mean for work? How will we make it financially? How will this affect my beloved wife? Children? How will I be brave when I have pain? When I won't be able to function in all aspects of the life I know and love?

Some retreat, some charge, some do their best but accept that they can only control things to the degree that they can, and put the rest in God's hands. Or if not God's hands, their doctors. Those, I imagine, may be better off, as they are free to make the most of their lives, once having come to a place of calm and peace as to their future.

On another share group I belong to, a great wife and caregiver has just shared that her husband's cancer has moved into other parts and organs. She is a fighter, and so chooses to search the world over for a treatment, for a hope. I did the same, and never regret having done so. My love relied on me to do the searching and googling. I was more than glad to. Some folks asked her today, what does her husband want? Some folks had asked my husband, why are you not searching for treatments for yourself, why is Lucy the only one doing so? Again, his answers would be "humor" inspired. Thinking back, why was that? Was I the one that desperately wanted for him to do anything and everything to stay alive? I will not ever know the answer to that, at least not while I'm alive.

By the way, it was on my insistence that Dennis go see the doctor for a stomach "bug" that eventually led to his diagnosis. He did go. As he often said, he did not like going to the doctor as you might be opening "Pandora's Box". As I reflect now, perhaps he was the type of individual that was happier not knowing every single detail of life. I don't believe that makes a person less knowledgeable but maybe less occupied with what can I do to control this? Intelligent, he was. He graduated Magna **** Laude from University.

Try this one, Kelly, next time the talk is dire or worrisome, come back with a "zinger" of your own! Once, when Dennis had finished chemo, I had opened a glorious bottle of Cabernet. I asked if he wished a bit. He seemed to hesitate, I told him, a little bit won't kill you! I almost choked on my words, as I had not meant to be humorous, just an expression that before cancer had been used a million times! He laughed so hard! I apologized, he said not to worry, and thanks for the laugh!

Best wishes,

Lucy

Kelly
My husband also had a passive approach and a negative attitude towards treatment. During his treatment there was always an undercurrent of tension between us that I finally brought up with him--we had a long conversation and it helped us to understand where both of our heads where. His cancer was very advanced at diagnosis and his prognosis was poor from the start. I was desperate that he finish first line treatment, at least, to see if it could help buy him time. I knew that afterwards he might say "no more." But we actually never had to make that choice--the cancer made it for us. He is now on home hospice after the cancer spread aggressively throughout his brain and elsewhere.

Deciding what to do, especially when the prognosis seems dire, means a very difficult, personal, and individual set of choices. I wish the best for you and your husband.

Karen