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Sister State IV NSCLC


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I've posted a few times before and constantly read the many posts looking for encouragement, grieving with the many loses and just wishing I never had to be here and never dreaming I would. My Sister needs your prayers as she's going thru some rough times right now. She's been unable to start chemo again since March because of surgery to leg to insert pin&remove bone met; was in severe pain before but pain in leg reduced with surgery but by then her body was weakened by chemo/radia so rehab has been hard.

We had so hoped she would get the surgery out of the way and be able to resume chemo as obviously the cancer was spreading. She had/has a met to spine with a collapsed vertabrae which at this point only has had radiation.

About a month ago at my insistence I asked her onc. to order a brain scan because of headaches. Not much of a surprise but she also has a single met to brain. So began another journey with dr's/appts/deciding on WBR in conjunction with CyberKnife or just Cyberknife. Everything takes time and one thing cancer patients don't have is a lot of time. It's so frustrating. About 3 weeks ago she starting with severe SOB, couldn't walk from room to room without breathlessness. It's been hard for her to be up and active getting her lungs moving so I believe a lot of this is because of being in bed a lot and not active. A three day stay in hospital showed nothing with lungs, heart, blood and dr's just said it's her COPD acting up (funny it never acted up before);

A week ago today I insisted she go back to hospital, get admitted and get some help for these issues as she was just getting weaker and weaker. The last 2 visits to emerg.room they did Chest CT's so two very recent ones were available. I was speaking to her onc. outside her room and he proceeded to tell me that he had reviewed the 2 CT's and it was showing a small spot on liver. I was so upset for her I asked him not to mention that to her right now because I just didn't think she could "mentally" deal with this on top of what's she's going thru now. He then proceeds to say, oh, by the way, when she had her leg surgery in March, the blood used for transfusion -- he received a notice from the Red Cross that the person giving blood to her had subsequently come down with Maleria. As her primary advocate/sister&caretaker I don't know how much more of this we can deal with. He assured me that shouldn't be a problem because it was sufficiently after the blood was donated. So I have a sister who's whole imune system is compromised and now this. I could have strangeled him but know it wasn't his fault.

So, she's still in the hospital and they are treating her for pneumonia they can't see on x-rays and copd for breathing -- 15mg decadron ev 6 hours and so much other meds. She's also undergoing WBR and will get cyberknife upon completion of that.

When cancer hits a member of your family your life drastically changes. I ache for her every minute of every day; I see the fear in her eyes as well as the pain and suffering. Initially I was all about trying to get her to a point where the cancer wasn't growing and now all I can think about is quality of life. How much can a person endure on this journey without losing themselves along the way?

Sorry for rambling on but I needed to get this off my chest. Not many people would understand. Thanks for listening and prayers to you all. Pam

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Pam,

So sorry your sister is going through so much--as are you. Cancer is a horrible disease. It does come down to quality of life at some point, unfortunately. Praying for a miracle for her and for patience, peace, and strength for all involved. Take care.

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I am so sorry for all that your sister is going thorugh. What an agonizing journey for you both. The quality of life question haunts me too.

Your sister is so lucky to have you standing by her and advocating so well for her.

You didn't ramble at all. We're here to support you.

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Dear Pam,

What a rough road you and you're Sister are traveling and Thank God you have eachother. I can only imagine how you're heart hurts. My Brother lived 5 months from dx and it was mostly good and that was hard enough on my heart. You are a wonderful Sister and I am praying for you both.

God Bless you Both,

Jane

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Dear Pam,

Hoping you can gain some strength, hope, comfort, and support from the many loving and caring people who are here for you.

My heart aches for the journey your family is on right now. Many prayers are what I have to offer.

Please come here whenever you feel the load too heavy. We are here to try to help you carry it.

Prayers and more prayers being offered for you.

Kasey

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Oh Pam, your anguish is stamped al over your post. But, as Val said, at no point did you ramble. Cancer is hideous and frightening but you are doing what you can in the best way you can. I'm afraid that that is all you can do. Unload here more frequently and those thoughts for your sister are on their way.

Dee

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:( Pam, you do what is best for your sister. This is a roller coaster ride and it is not fun. My husband died one week ago from lung cancer. He knew he was dying and I told him he was just weak. I always gave him encouragement. But he died while I was at work, with his son holding his hand. I never dreamed he would die that day. He knew I either was trying to sugar coat things or that I couldn't handle it. So he let go when I wasn't here and spared me the hurt. If you think she is ready to cope with her impending death---talk to her. If you have doubt, don't bring it up --just keep her comfortable. It is the hardest road there is to travel. Whatever decisions you make will be right.God bless you and take care. Nancy C
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Hi Everyone and thanks for your kind words of support. I just got home from hospital visiting my sister and she seems to be doing a little better on her breathing issues but still very weak.

How can one know when the time is right to discuss end of life issues? I've watched her deteriorate but felt she has always had hope of some easing of her burden. When she was admitted to hospital this time she had the severe SOB with horrendous wheezing. Dr's did not know what was causing the problem. They are now saying maybe a stapf infection and some pneumonia.

When first admitted her Onc & Lung Dr both asked her what her wishes were should she need breathing machine. I think it threw both of us for a loop. I guess I couldn't believe they would even ask her that in her condition as she then asked them if she was going to die. It was all I could do to be composed. God, I hate this disease.

Thanks again for your support...Pam

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Hi Pamlee.

You didn't ramble at all. You explained your situation very well.

I have trouble broaching end of life issues also. I don't know why, but it is easy for me to talk about it with other lc survivors or a few select others. But, with some people, especially close ones, it has been a touchy subject with me.

It might be wise to get a third person involved who can approach the topic and get the subject out into the open for discussion. Every hospital has at least one social worker. I hope that her hospital will have a sincere and caring one who is knowledgeable about the legal and medical and psychological aspects. Also, clergy might be another avenue to explore. Again, there is usually a hospital chaplain who can help if yours is unavailable.

Sorry you and your sister have so much going on. She is blessed to have you advocate for her, care for her, and love her.

Prayers.

Cindi o'h

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I can think of a million things to say having been on both sides of your situation. I think the advice about asking the hospital social worker to help is excellent. It may be easier for your sister to talk about difficult things with a caring "stranger" than with a loved one. She may be afraid of upsetting you.

I can understand how the news about the transfused blood must have felt like fate giving you both a big kick in the shin. Not fair at all! And no one you feel comfortable taking it out on so you're just stuck carrying around the anger and despair. Glad you can vent here.

But, even if it seems melodramatic or silly, it may well help to have some time alone to beat up a pillow and just spit out all the things you need to say to the cancer, to the doctors, to fate. I've done this, had a good sobbing fit and then, gradually, felt calmer and stronger. I was really better able to take on the next battle.

Wishing you and your sister moments free of pain and anxiety,

Leslie

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Hi Pam,

So sorry I did not post before this as I was off the board for a bit.

I feel so bad for your sister. She is going through a very very rough time and so are you. It seems to be one thing after another.

Do you have an update, as you posted back in June?

Prayers sent to her and her family members.

Maryanne

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