What to do next?

beep · June 2004

I have only posted here a few times, but I read everything daily. Let me start by saying this is a very depressing post, so if you don't want to be depressed, skip this.

That said, I don't know where else to turn at this point. Oscar, my "sort of Dad" was dx'd as stage III colon cancer in May 2002, with a permanant colostomy has bone mets and brain mets. They did radiation to his humerus bone which is where a tumor was located in March, it is still there though. I don't know how much good it did. Then he fell a month ago and they found 3 brain masses, did 3 weeks of radiation. He is 68 years old, has Medicare and a completely "****" (sorry) Humana HMO policy that covers almost nothing. His doctors have not treated him aggressively, in my opinion. Why they didn't do chemo with the bone mets, I don't know. Well, we thought he wasn't going to last the weekend and he will literally be sleeping 22 hours of of the day and then the next day he will be walking around a bit, eating, and seem 80 % better than the day before. One day he's good, the next day we contemplate taking him to the hospital, but he says he doesn't want to go. The doctor said we were going to see how he was feeling by next Friday and talk about chemo. I think he wants to give it a try, but am I being realistic at this point? I know that if he would have received better care we might not be at this point, but here we are. I read somewhere that if the chemo worked the first time around that it may the next, and it did in his case. Am I being unrealistic? Should we try? Or should we just let him go? I don't know what to do. I'm so sorry to post these questions here, but I get no response on the other boards and I don't know where to go. When he is looking good like he has for the past few days I just want to say "yes, lets do it" and then he slips back to this person who cannot stand on his own and just sleeps. We have 3 good days followed by 5 really bad ones. Any advice I can get would be great. Oscar is in Canada with his brothers and sisters right now playing cribbage in a tournament (cribbage is a card game for anyone that doesn't know what it is)and today he is able to play so I'm happy. Who knows how he will be tomorrow, but we are happy just having the good days whenever we get them. Thank you for listening.

Lee Ann

StacyGleaso · June 2004

Hi Lee Ann,

You have posed a lot of questions, and I am not sure there are any "sure things" or easy answers. With the disease so advanced, I agree that a more aggressive approach in the beginning may have changed things dramatically. But we cannot wallow in the past and the "what ifs."

With that said, I am hoping that Emily (2bhealed) will chime in with some nutritional changes which may help. Again, there are no guarantees with anything, but by creating a different chemistry within the body via diet, small miracles may grow bigger.

The fact that there are good days followed by bad ones tells me that there is still hope, in my opinion. (advantage of the internet: opinions...disadvantage of the internet: opinions). I personally would do whatever I could to conquer the "Beast." Please keep us posted, and try to find the comfort and strength you need to handle whatever the outcome.

Take care,

Stacy

Karlen1 · June 2004

Hi Lee Ann,

I post as a survivor of rectal cancer (so far, as there was one positive lymph node) and my brother has just been operated on for mets to the brain and is taking radiation at the moment.

I would hope that should I ever find myself in your "sort of Dad's" position, that my family would not interfere in any way, just let me go.

It's a tough decision for you, I know, but just thought I would let you know my feelings.

All the best to you and your Dad.

Karlen

steved · June 2004

I guess the reason people have struggled to answer your questions and why you can't find answers in yourself is that there is no clear answer to these situations. What ever you decide to do it sounds like your priority must be to support your father in achieving the greatest quality of life in the time he has left- however long that may be. I would suggest sitting down with him (and anyone else who is closely involved) during one of his good days and talking to him about what he wants as in the end that is what matters. Chemo is always an unknown and may make him better or may make him worse- the only way to know is to try. Your fathree may however wish to simply enjoy his good days and accept he needs to rest on the bad ones and you must accept his wishes.
Do talk to others though as you need to start finding some acceptance of teh situation and the inevitable future in yourself. Do ask questions but be realistic about whether they can truly be answered. Use this site to get rid your emotions too as they will be eating away at you if you don't. You have been through an incredibly tugh time and it is unlikely to get easier in the short term but you have to look at the best way you can cope so that you can be there to help your dad.
Sorry I haven't really answered your question but no one can really make decisions for your dad. Just be there to help him make them himself.
Best of luck,
Steve.

jsabol · June 2004

Hi Lee Ann,
I read your post over the weekend, but felt I needed to think about it before posting. My dad had colon resection and 1 yr of chemo (9 positive nodes, invasive tumors) at age 82. While he did have 2 relatively good years following the surgery, he then had a recurrance with mets to liver and lung and inoperable colon site.
As a nurse, I understood that it was just a matter of time. As a daughter, I just felt anxious, sad and frantic at times.
Talking with my dad directly proved to be best for us. He was clear that he would try more chemo, but he quickly became sick from it, and from his rapidly advancing cancer. He signed on with a hospice service that followed him at home until walking became a problem, at which point he moved to a nursing home on hospice care for the last 2 weeks of his life.
My family found the hospice services to be invaluable in the support and info they gave to all of us. Is there such a service in your area? It's horrible that you have to deal with lousy insurance issues at this time, but I hope you can work something out.
Do you have anyone you can talk this through with before talking to dad? The issues are complex and can be exhausting. Take care of yourself and keep us posted. Lots of good advice at this site, but as Stacey said, you have to pick what fits for you.
Thinking of you, Judy

Unknown · June 2004

Like Judy, I had a wait awhile to answer your post. As speak as caregiver for both my husband diagnosed last year stage III right colon cancer with four nodes and my mother, diagnosed September 2002 with inoperable stage III lung cancer.

As wife and daughter, I will do whatever it takes to keep the two people that I love so much with me. However, I never loose sight of the fact that ultimately the decision to do whatever they want to do is theirs and I must respect that choice. So far, all is well for which I am very grateful. My husband tolerated chemo real well and is currently cancer free and is most definitely is still considered curable...my mom is not. While she is responding and has continued to respond to chemo, there is no cure (short of a miracle and I'm certainly not beyond believing in those...so I keep hoping) but she too tolerates chemotherapy quite well, not overly compromising her quality of life. If it should ever get to that point, I know what she will do and although it will devistate me, I will support her all the way.

I know this response may not have answered your questions directly but I just wanted to give you my feelings on this hole crappy situation.

Here's hoping they find a cure real, real soon!!!!

Monika

beep · June 2004

Thank you all so very much for responding to my post. You don't know how much it means to me, and you are all very special people. I appreciate and respect everything you each said. One problem that I didn't mention is that Oscar's doctor's have not said "you are dying" to him yet, they just won't do it. Why is that? I don't be the one to do it. Of course, I look at life as, we are all dying someday, and nobody knows when. I think once they put it to him in those terms, maybe he will choose not to do the chemo but to enjoy what he's got left. I don't know. Then again, maybe the chemo will help. He responded well to it before, maybe he will again. That said, he does seem to have a visible melanoma on his foot. I know what those look like and I'm sure it is one. This makes me think, and the doctors kind of indicated that the cancer was other places in his body. He is due to fly back from Canada on Thursday. We will see his oncologist the next day and maybe then Oscar can decide about the chemo. If he doesn't do chemo, then we are definitely going to call hospice for some help, and may end up going the nursing home route. I hate to do that, but I know that I can't take care of him the way he needs it, round the clock care now. I know i'm just rambling on right now, but thank you all for being here. At this point I just want him to be comfortable and feel loved. I don't want him to hurt. He is taking morphine 2 x a day and it isn't really doing much for the pain. Any suggestions on what to do about that? Thank you all for being the wonderful people that you are. I pray for you all.

Lee Ann

kangatoo · June 2004

beep said:
Thank you all so very much for responding to my post. You don't know how much it means to me, and you are all very special people. I appreciate and respect everything you each said. One problem that I didn't mention is that Oscar's doctor's have not said "you are dying" to him yet, they just won't do it. Why is that? I don't be the one to do it. Of course, I look at life as, we are all dying someday, and nobody knows when. I think once they put it to him in those terms, maybe he will choose not to do the chemo but to enjoy what he's got left. I don't know. Then again, maybe the chemo will help. He responded well to it before, maybe he will again. That said, he does seem to have a visible melanoma on his foot. I know what those look like and I'm sure it is one. This makes me think, and the doctors kind of indicated that the cancer was other places in his body. He is due to fly back from Canada on Thursday. We will see his oncologist the next day and maybe then Oscar can decide about the chemo. If he doesn't do chemo, then we are definitely going to call hospice for some help, and may end up going the nursing home route. I hate to do that, but I know that I can't take care of him the way he needs it, round the clock care now. I know i'm just rambling on right now, but thank you all for being here. At this point I just want him to be comfortable and feel loved. I don't want him to hurt. He is taking morphine 2 x a day and it isn't really doing much for the pain. Any suggestions on what to do about that? Thank you all for being the wonderful people that you are. I pray for you all.

Lee Ann

Hi Lee Ann--I too had to spend a little time over your questions and agree with the responses you have received.
I am a survivor--positive for the future but nonetheless still aware that cancer is now part of my life and ongoing health concerns.
My mother passed some 5 years ago from a brain tumour and Jen's stepfather from lung cancer, so I know only too well your anguish.
When diagnosed myself I talked to Jen at length about my "prospects" and the posibility of me succumbing to cancer.I wanted to make her aware that I was prepared to fight this with all my worth but also that in the final analysis--the day of judgement--It is MY choice as to whether I wish to continue fighting.This means in the situation where limited time was given to me--do I continue chemo or whatever offered--or--is my quality of life affected by the medication not worth the effort for only a very short reprieve?

I am quite adamant that to prolong my life I would wish that time to be "quality time" with what I have left--rather than a miserable time right to the end.
In other words "palliative care" would be my choice in lieu of minimal time on medication which could well affect my comfort zone in the time I have left.
Fortunately I am lucky enough not to have got to that stage--but--it "could" happen.

In essence, what I am trying to say is--I believe that for all the very sincere people in a cancer patients lives--be it spouses/relatives/ friends--there is ultimately only ONE person who should have the choice whether to continue treatment or refuse it.
The choice is obvious Lee Ann---Oscar has the ultimate right to this decision--talk to him--support and love him--but above all, understand him because he, and only he knows the fatigue--the pain --the suffering that this disease inflicts.
Our sincerest thoughts are with you Lee Ann.
Both my mum and Jen's stepfather ceased treatment when all became too much and all was really lost-but--both of them died with palliative care--in minimal pain--but in peace.
kanga and Jen

beep · June 2004

kangatoo said:
Hi Lee Ann--I too had to spend a little time over your questions and agree with the responses you have received.
I am a survivor--positive for the future but nonetheless still aware that cancer is now part of my life and ongoing health concerns.
My mother passed some 5 years ago from a brain tumour and Jen's stepfather from lung cancer, so I know only too well your anguish.
When diagnosed myself I talked to Jen at length about my "prospects" and the posibility of me succumbing to cancer.I wanted to make her aware that I was prepared to fight this with all my worth but also that in the final analysis--the day of judgement--It is MY choice as to whether I wish to continue fighting.This means in the situation where limited time was given to me--do I continue chemo or whatever offered--or--is my quality of life affected by the medication not worth the effort for only a very short reprieve?

I am quite adamant that to prolong my life I would wish that time to be "quality time" with what I have left--rather than a miserable time right to the end.
In other words "palliative care" would be my choice in lieu of minimal time on medication which could well affect my comfort zone in the time I have left.
Fortunately I am lucky enough not to have got to that stage--but--it "could" happen.

In essence, what I am trying to say is--I believe that for all the very sincere people in a cancer patients lives--be it spouses/relatives/ friends--there is ultimately only ONE person who should have the choice whether to continue treatment or refuse it.
The choice is obvious Lee Ann---Oscar has the ultimate right to this decision--talk to him--support and love him--but above all, understand him because he, and only he knows the fatigue--the pain --the suffering that this disease inflicts.
Our sincerest thoughts are with you Lee Ann.
Both my mum and Jen's stepfather ceased treatment when all became too much and all was really lost-but--both of them died with palliative care--in minimal pain--but in peace.
kanga and Jen

Kanga and Jen,

Thank you for your kind words. I leave here everytime feeling more peaceful about the whole thing. Hopefully Oscar will be back and we will see the doc on Friday and we will know what his decision is. He is not in his right mind right now though. He flies on Thursday morning and he was telling his brother "if it's Tuesday morning here isn't it Thursday in Orlando" (there is a 2 hour time difference) and then he said "I'm confused as hell and can't figure this out". So very sad. This man has been sharp as a tack his whole life. I have no doubt if he'd had better care and fought the bone mets early on he may be in remission now. But his primary care doc ignored the pain, gave him MORPHINE FOR THE LOVE OF GOD instead of looking into what the pain was, for 7 months. Knowing he had colon cancer in 2002. It sickens me to think doctors can be so cold. They had to know what it was. If only he'd told us this all along, I would have helped him fight for tests and treatment early on. But what if's don't do me or him any good now. I will support whatever he decides. His doctors have never given him the proper diagnosis, instead they tell me. They are chickens! I don't understand this, why they won't go in and face him and tell him what the liklihood of overcoming this is. Rambling again. Loving all of you for your helpful advice and words. You are great people and I pray for you all every day.

Thank you again, and I'll let you know what they tell him on Friday. Maybe we will be at some sort of decision then.
Lee Ann

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