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Different ways to decide what is best


Joppette

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I was going to post this as my normal posting in Thursday's Air. But as I read through it, I felt it really belonged in this blog.

Here's what I wrote:

Good evening! Just got home from Gilda's support group meeting. Tonight was a tough one. Two of our regulars are now in Hospice care. One was Stage IV lung cancer, 32 years young. Another person in our group is also lung cancer, and she is on her fourth round of chemo. Her doctor is being a jerk, and telling her that this chemo will do no good and that she needs to give up and get hospice care and live the rest of her days the best she can.

She is broken hearted. She's taking the chemo in spite of what the Onc. says because she's scared of dying. She tried to be a candidate for (I can't think of the right names) but you know...other alternative therapies, or experiments, but was told she is not a candidate for that either.

She is going to die in treatment, fighting all the way to the end. And I know that many of us are going to do that. But what makes me sad is that she feels relatively well, and she is spending all her time in treatment, and not in living as well as possible.

I hope I don't get clobbered by this, but I hope you understand what I mean. My Mom had Stage IV SCLC, with extensive mets. to the brain, bones, and organs. They gave her two weeks. She wisely chose radiation to the brain, and a couple of places where the bone pain was bad. She said no chemo. She accepted that she was dying, and just wanted to live as long as she could, as well as she could. And we got 9 fantastic months of loving, living, shopping, laughing, hugs, kisses, and so much more. I cherish those memories, and am so glad that my last memories of her were not of her laying in bed suffering the side effects of chemo.

I hope I'm not offending anyone here. How we fight this disease is very personal. It depends on our age (very important). It depends on our overall health aside from the cancer. It depends on how advanced the disease is. It depends on what life experiences you still want to experience, and what that time frame is. If there are young children in the family, it can be a determining factor in treatment. It depends on so many variables, that there is no ONE right way.

All I know is that I understand all of the motivations. My little sister was only 24 when diagnosed. It was brain cancer, but very aggressive. In six months, she endured two brain surgeries, and several attempts at chemo and radiation. We didn't realize that what we asked her to do was torture. She was so young! We wanted to do everything possible to save her life. She was diagnosed in April. After an appointment in October and another aggressive chemo applied directly into her brain, she looked at all of us and said STOP. I'm not doing this anymore. She lived one more month and then died. My heart has been broken over this for 27 years. She's been gone longer than she was here.

Looking back, we'd have done things differently. We just didn't know.

I don't know where I'm going with this, but needed to write it all out. Thank you for reading and "listening".

Judy in MI

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Judy,

Venting like this is good for your soul. You are right that everyone's situation is so different. I think what we all need, no matter where we are in our journey, is hope. Sounds like your mother had a wonderful several months. Also, your baby sister needed to have some hope by going through a bit of treatment. Nothing is more sad that a cancer patient that is told they are not candidates for ANY treatment. You fought for your sister's life like a good big sister. My older sister is doing the same for me. She will be like you and respect me when I say enough.

Well, looks like another dust storm is blowing in so I better log off. Big hugs to you.

Karen

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I loved your reply Karen. And I agree.

We all do what's "right" within ourselves, with what we know at the time, and like Judy wrote- age, health, hope, situations, our faith, etc...

I've been a patient advocate for 9 years and I've held the hands of so many who have passed away, including my mom and my dad...and they each did it their own way...

Most recently my brother's mother in law passed away of skin cancer. By the time it was diagnosed it had spread through out her entire body. She tried chemo, then she tried hospice...and her last words were of comfort to my brother and his family--she would be with her husband and parents again, she was at peace knowing she was in the lord's hands. Her way was to comfort those she was leaving behind. She was buried on Sunday.

When I think of the path less travelled I think about Dean Carl. He did it in a HUGE way, his way...and touched us all straight thru the heart.

And I think of Fay A, who did it her way...fighting every last minute, teaching us all along the way.

there's no right way or best way....the best we can hope for is a loving way.

Hugs,

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It snot about how you start, Its about how you finish. I just want to run up there and give Ya the biggest softest hug You have ever gotten right now!

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But what makes me sad is that she feels relatively well, and she is spending all her time in treatment, and not in living as well as possible.

Judy, I keyed in on this sentence and can tell you from my experience that feeling relatively well contributes to wanting to live. And living as well as possible is relative. Her living well might be being able to get to group and be in the company of other survivors. It might be feeling well enough to have morning coffee with someone she cares about. The "living life to the fullest" means different things to different people. I'm certainly not as lively this year as I was last in NJ. I might crash and burn a couple of days but the trip to Delaware with my sisters and some nieces was awesome. I managed to walk the Peach festival but had to stay back and chat with a couple of family members who also didn't go to the Amish store. I did say there was a time I'd be up and out with the shopping group but, you know what, those of us who stayed behind had a lovely visit.

I told one of my sister cousins yesterday that after four years I'm really over the treatments. But guess what, I also said I'd take it any day over the alternative which is dead. Hope this adds a perspective to the "how much treatment is too much" dilemna.

Judy in KW

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Judy MI - I thank you for posting this subject. I've been giving this subject a lot of thought lately. As Judy KW said -

The "living life to the fullest" means different things to different people.

I know I will fight this disease as long as I have "quality of life" -- but the hard part is deciding exactly what that is - and of course it means different things to different people. I think/hope that I will know when the time comes that the quality is just not there.

I am very interested hearing others' thoughts on this subject that it seems we so often avoid.

Diane

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I have also been thinking about this a lot. And I think one significant factor is whether or not your diagnosis is Stage IV / recurrent and any other. I've been trying to find the words to express my feelings, unsuccessfully.

Day after day, being bombarded with campaigns about "life after cancer" when that is not your reality gets almost as old as continuous treatment. It's really something to be looking at 3 years since discovery - a marvel - and something for which I am profoundly grateful.

I am thinking a bit about the recent walk in Seattle - as far as I know, there were 7 survivors out of 400 or so people. 5 were Stage 4 (or recurrent.) Where were all the "life after" people? Living life away from cancer I suppose.

Living life to its fullest? What does that mean when you try to do two things in one day and crash into the wall of fatigue? I've adjusted in so many ways to "my fullest". I see how the sun's warmth drains me completely, so I seek shade, or stay inside even though sunny days have been rare. I make difficult decisions about what I choose to do even on good days. On the best days, I think I could do more, but the price is almost always too high. It's hard because I look well and can push through something like a 5K walk - but I was wrecked for the two following days. I grieve what I have lost in terms of strength and stamina, but I also celebrate what I can still do and how much health I do experience.

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Thank you friends for all of your thoughts and comments. I am crying tonight after yet another argument with my husband. He is angry because I am not the "woman he married."

No I am not. My world was rocked by this disease. While I don't baby myself, I do realize limitations that I never had before, and never would wish on myself or anyone else.

I am so angry. I left this man this week for six days. I needed to get away from the madness. After a lot of tears, he asked me why I was so sad. I tried to explain that I do have limitations, none of which I wanted. But for him to expect me to just be like I was before cancer was not fair. He does not understand.

I don't know what else to say right now....Obviously if I had a do-over it would be to never get sick, but that is not reality. I don't know what to do with this person I married.

Seriously.

Judy in MI

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I'm sitting here crying for all of you who are living "with" cancer. Even though I always have the fear that cancer will re-occur in me I, at the moment, am one of those who is living "after" cancer. And I treasure each day and live as much as I can to the fullest. I've become so close to y'all - my Lungevity family. I can't stand the thought of losing any more of you to this disease!! So - I pray - a lot.

Judy MI - I feel for you too - dealing with Randy on top of everything else. What happened to 'in sickness and in health'? None of us are the same people we were when we first got married. I'm sure Randy isn't either! I don't have any solutions or advice for you - just know we're here for you - as much as we can be. I'm sending you a great big virtual hug. Wish I could give it to you in person.

Paulette

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Paulette hon, I don't think we meant for you to cry. We are a bunch of strong women (since none of the guys are represented here - except dear Randy, who is passing out hugs) who recognize our mortality perhaps just a touch more than some, but we are living our days with a heightened sense of gratitude. I suppose some days there is a pinch of anger mixed in, perhaps some fear too. I don't want to lose anymore of this extended family either, but no one has that guarantee. Heck, my friend's grieving the sudden loss of a 25 year old right now. (I don't the circumstances - a friend of her son.) Another friend is at the funeral of his cousin in law - unexpected - the light is out for a "sweet presence". Unfortunately, death is part of life. I think perhaps we are just asking for a little understanding when we don't feel so peppy, and when we laugh to ourselves or out loud when we hear what great warriors we are (I'm trying hard to not fight my own body, thank you) or when someone says unconsciously "There's always next year" or some other normal saying that has taken on so much more significance.

I hope you all have a good night's sleep, awaken to a fresh day with soft breezes, and treat yourself and those you love with kindness. Night all.

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I just love you Stephanie. You always says just the right thing in just the right manner. I'm having so much joy visiting my family in NJ. AND I am SOOO tired lol. But hey, I'm doing it and I'll lay low the next couple of days (hopefully!) and regain my strength. Paulette, I agree with Stephanie, we are so glad you care but we are some tough cookies.

Judy in KW

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