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I expected too much..

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

Since Mark came home from the hospital last Thursday he had 4 good days. He restarted radiation on Monday and now it is bringing him down, fatigue. Real bad. Today is a bad day. We see the oncologist tomorrow. He is going to try and ask Mark "again" about trying to do chemo. I don't think Mark has changed his mind about that especially with what radiation is doing to him. His blood sugar is being tested three times a day and he is doing good. Like I said, the radiation is kicking his fanny! Lately (today, all day) he has been really mean to me. I am here to please so I just let it fly by me. According to a good friend of Marks, who I talked to last night. Her husband recently passed away of a cancer (not sure which) and she said that near the end he got really mean and pointed all his anger towards her.

Thanks for listening!

~Kelly

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

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

lekkerone
Posts: 199
Joined: Jan 2011

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

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

Joe,

First of all, congrats on being a survivor!

Thank you and I completely agree with you! His idea of "man-up" is get off the pain pills. Obviously he doesn't understand what these tumors are doing to him. the one in his abdomen that is pressing on his spine is a bit bigger than a softball (smaller than a melon) and the rad onc said this one is going to take some time in reduction.

He does need to pick up his game and take care of himself and I keep telling him that. I can only do so much. Today (so far) is a good day, this is probably because I am home from work today to take him to the doctors. Unfortunately I have to work and I am gone from home at least 12 hours a day. He doesn't like that too much.

I expect the wide range of emotions especially from men because, unfortunately, in their mindset, from my understanding, an illness is out of their control and men have issues when they lose control of something. Even the most mild mannered man. But like I said that is my understanding (and a bit of talk with spouses of friends that have recently passed from a cancer).

Thanks for listening!
~Kelly

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

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

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

Hey Glenna,

I agree. I keep giving a speal the positive effects of chemo. The onc says he has mets up the spine and esphogus (sp?), in his jaw, in his neck. He had a PET scan in the beginning of March as perscribed by the rad onc. He should be getting another CT scan or PET scan soon.

Before he came home from the hospital he asked to do hospice. I convinced him to get 5 more radiation treatments, see how you feel and try to do 5 more before I call in hospice. So far we have had 3 going on 4 today.

He did apologize to me last night and I told him I completely understand and that I am not taking it personally, I am here to please him and make him comfortable. During our marriage we never argued so why start now. We each have our moments, we are only human and, as I said before, it is expected.

Thanks for listening!
~Kelly

medi_2's picture
medi_2
Posts: 510
Joined: Aug 2009

Good job.
Medi

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

I found this on my computer. The 30th we will be celebrating our 6th anniversary! I asked him to renew our vows at the same place we got married. On the Gulf of Mexico at one of the piers and we went fishing for our reception. It was great!

Dan620
Posts: 220
Joined: Dec 2009

I have to agree with Joe, this battle with cancer is not easy but Mark can do it. I think we all can understand what he is going through, i know i didn't think i could do it but 2 years 8 months later doing great and would do it again if are when it comes back. (NSCLC 3B in operable) Best wishes for Mark and you.... Dan

phoobear
Posts: 39
Joined: Apr 2011

kelly, sometimes before you know what has happened the cancer can spread too the brain. maybe this is the reason. i will be praying for you as well as for him. god bless you both.

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

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

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

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's picture
KLScoville
Posts: 161
Joined: Mar 2011

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

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

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

medi_2's picture
medi_2
Posts: 510
Joined: Aug 2009

I wish I could be there to hug you right now; but you will have to settle for a virtual one ;)
please take care of yourself.
Cheers
Medi

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

Thank you so much, Medi! Hug accepted and sending one your way!

Best wishes,

Lucy

karenbeth's picture
karenbeth
Posts: 194
Joined: Sep 2010

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

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

Hello all,

First thanks for all the messages. I am a bit quick witted and have good comeback's for him. Like I said we have a great relationship.

Doctors appt went sort of well yesterday. Mark, being 6 foot now weighs at 121 lbs. His blood pressure was a bit low (had to do twice). Heart rate normal, temp 96.3. They tried to draw blood to find out his count. Didn't get too much but enough to do the count. WBC and RBC all good. The other figures (as the oncologist explained to me) are okay even though they are on the abnormal side, this is because of the cancer.

I asked the doctor if the cancer has spread to the brain. He stated that at the PET scan he can't tell because my husband was thinking. Can't tell if they are "thought" glows or cancer cell glows. He did tell me that the lung cancer has spread to the aorta, esphogus, jaw, neck, abdomen. He asked Mark if his feet are swollen. Mark didn't understand but I explained that if your heart is struggling then your feet and ankles will start retaining water. Same thing happened to my mom for 3 years, swollen right leg and doc couldn't find out why until she was in dier straits and found a benign tumor in her heart. A big one too. She is fine now. Thank God. Husband still is saying no to chemo.

Question? Has anyone had lung cancer spread to the aorta? I would like to know if this is making his prognosis any shorter. Per the doctor the cancer is all up and down the middle of his chest and back (in the nodes) from the belly button to the jaw. Like I said unsure about the brain but will find out on the next CT scan. They didn't do any of the head back in the beginning from my understanding.

Thanks for listening!
~Kelly

angelyn's picture
angelyn
Posts: 51
Joined: Jan 2011

Kelly-
I'm surprised that Mark's doctors did not do a CT scan to see if there were any tumors in the brain. Please tell him that yes, chemo is hard, but he could extend his life many, many years. Why give up when there could be a cure right around the corner?
Sending good thoughts your way-
Angie

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Had I known of the extent of your husband's cancer, I would not have written as I did. I assumed, from the minimal information provided that he was simply overwrought from rad treatment and unwilling to go through the effects of chemotherapy as a result. The truth, as I have since surmised from your responses, is that hub is in bad shape, again, to be honest. Metastasis to all of the areas you describe has got to be extremely painful as well as debilitating to his mental health.

I will continue to submit that if his doctors are promoting chemotherapy, they must have a reason for doing so, now, I would guess, to alleviate pain and to increase the amount of quality life remaining (which can be rather substantial, surprisingly) rather than to promote 100% recovery (just a guess). I will also strongly suggest that pain management is critical to survival, as pain is perhaps the number one reason why people ultimately cave in, in my personal experience.

I know that pain management comes with its own set of problems: eventually, they must be of sufficient strength that they limit our ability to recognize the world around us, after which they are not doing the good we want from them. I know that.

As others have more wisely suggested, the choice is your husband's ultimately.

I wish you both the very best and hope that you can enjoy your time together, whether it is a day or a decade.

Take care,

Joe

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