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November 3 ~ Brian's update


Patkid

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Friends,

Firstly, thank you for all the wonderful cards, calls, emails and support. We are so grateful for each of you and hold you and yours in prayer everyday. Some day I will make up to all of you for my lack of posting. We do care and we do read we are just short of words right now.

Brian spends most of his time in bed. Being 'up' consists of a shower, then crawling into his warm jammies w/ a fleece hoodie and making his way to the couch. He has very little interest in TV but still tries to read a bit everyday. He listens to Brennan Manning on CD and some NPR. We made it to bible study last night, but Brian was 'out of it' and chilled.

I am not sure what to think:

Is Brian dying?

Is this just how he feels as a result of Alimta and Sandostatin being given at the same time?

He was so sick and in the hospital and the CT Scans showed rapid tumor growth and then he was so sick in Florida.

Now he has the Fentanyl pain patch and oxy IR for pain in his abdomen and chest. (Tumor sites)

So is his confusion and exhaustion just a result of all the meds?

or is he dying?

His weight is down to 172 from 196 last Feb. He has NO appetite, but really tries to eat a bit to help keep his pills down.

He vomits randomly.

He suffers alternatly w/ diarrhea / constipation.

He gets the chills, but the fevers and night sweats have stopped. Is the Alimta slowing tumor growth? Usually he runs fevers while his tumors are really growing fast.

Next appt w/ onc is next Thursday. Some hours I do not think he could possibly live that long, then he rallies a bit.

Is it odd that Brian doesn't seem to get new tumors? His existing ones just shrink at the beginning of new chemo and then after a couple rounds they grow like crazy again. But he doesn't seem to get new tumors. Brain is clear, adrenals clear and so on............just these huge tumors in his chest and liver. The last CT report on the liver said that the left lobe of his liver is all tumor at this time.

I am so confused.

But

I don't want to assume he is dying if this is treatment related.

But

I don't want to have death sneak up on us ~ especially the children and his mom ~.

Please pray for us and know that we love you and that we pray for you, too.

Pat

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Oh, Pat dear....I wish I had answers to your questions, but I don't.

Brian's onc or one of the nurses might be able to help you answer some of your questions, though, I'd think.

This must be so hard...but the fact that Brian gets up every day and cleans up, getting into clothes...IS a very good sign, I think. I wouldn't think he'd even have the energy for that if he was very close to dying...but honey, I don't really know.

My heart breaks for you. I can hear the pain and confusion in your words. Maybe put in a call to one of the onc's nurses? I know the nurses at my onc's office have been a source of info and support to me many, many times. Often they know as much about patient reactions as the docs do.

Just know that a lot of love and caring comes your way and Brian's too. I just wish and hope that the meds he's on might turn some of this around...and wipe out more of the tumors.

Thinking of you every day, Pat...sending my best.

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I wish I had answers for you, too. all I have is love and support, though. and admiration. I love that Brian gets up, and reads and listens to CDs and NPR. I love that you want to be so present for him.

I also think Addie's right, if the questions are really torturing you, it can't hurt to call the nurse.

just know that, even without knowing exactly "what" is happening right now, you are the most amazing partner to him, and he knows it. no matter what, you have shown up for him so incredibly.

praying, as always.

xoxo

bunny

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I think until the doctor tells you there is nothing else he can do you should trust that he feels Brian has a shot at more time. If you want to know the doctor's feeling on how much time he has, I am sure he would tell you. I would hope he would tell you when he feels it is time for hospice. I am so sorry for what you are going through...and I hope he has good days ahead.

Rochelle

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My Dearest Pat and Brian,

Oh I just feel the pain in your words Pat and I have no wisdom to pass on. I will pass on many many prayers for you both. I think of you so often. Pat please feel a warm hug that is coming your way.

God Bless you both,

Debbie

Husband Alan DX small cell lung cancer Jan 10th 2005

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Pat,

I agree that you might want to talk to the nurses at the doctor's office . One thread you might want to read is on the NSCLC & Mesothelioma board... by Linus32. It has to do with mental confusion that was being caused by a patch . On that board you will see several people mention side effects from patches and other medications. One of those is Maryanne writes about how the Fentynal Patch made Joel like a zombie. This probably won't answer your questions about Brian's case, but it will possibly give you a reason for some of his symptoms. Pat, I just want you to know that my heart goes out to you and to Brian and I keep you in my prayers. I know this must be such a very hard time for both of you. God be with you.

Love,

Sue

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Pat...no answers but lots of prayers. I have always been a believer that not knowing is the worst of all fears. I think you should make a call and see if you can get any information that might ease your mind a bit. Waiting until next Thursday will be a long wait for answers.

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Pat, if Brian is not eating regularly that could account in part for his tiredness, etc. What works for Lucie when she is taking chemo (and Brian is taking two at a time!) is to snack every two ro three hours. I insist that she eat something. Lots of Frosties, shakes, Ensure, Smoothies, etc. I agree with Ry that as long as the doctor has treatments, then treat the beast. Best to you both. Don

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Pat,

I am so sorry, but Brian is still getting in the shower and that is a positive sign, but it does take alot out of you when you are undergoing treatment. I agree w/Don, he will feel better if he snacks on a little something. Alimta makes me lose my appetite in the first few days, but I make myself eat, even if it is just a piece of bread, because it settles my stomach.

Also, the side effects from all the medications he is taking could be partly responsible for his confusion and vomiting. I took a Lortab the other night for pain, which I used to take regularly with no problems, and threw up this time. You just never know how the body is going to react to these harsh drugs.

Praying for you.....

TAnn

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Pat,

I'm so sorry; but then you already know that! I completely understand your fears and concerns and hope that you get some answers to all of your questions. Until then, please know that we think of you and pray for you both daily!

Love,

Beth and Bill

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Hi Pat,

I just wanted to let you know that you and Brian continue to be in my thoughts and prayers.

I also agree with what Addie's suggestion - don't be shy about asking questions of the nurses who are assisting you if it will bring you some peace of mind.

Kel

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Hi Pat,

I don't have answers, only sympathy for you and Brian.

I am praying so hard that Thursday will be good news from the doctor, and that the symtoms you described will subside so that he can begin to do all the things that we sometimes take for granted everyday.

Stay strong and have faith that he will be feeling much better SOON!

Hugs,

Melinda

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Pat,

I know this is soooooooo tough. I used to tell my children that one of the reasons they felt so tired when they were sick was that all their soldiers were busy fighting the disease. And you know what, I think that is a lot true. Brian's body is fighting this disease with all of its armies in addition to having that chemo stuff.

He is a trooper and you are a loving and devoted wife. May each day be a little better.

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(((Pat and Brian)))

That's one of the problems with this disease (and many others, I guess) - you are expected to hang in there when it seems like no one knows exactly what's going on or what to expect. If you could get clear, definitive answers, you'd know better how to behave, what to prepare for, etc.

Not knowing if something is a harmless response to treatment or a sign of something more alarming makes it so hard to just "be." You wonder, "Should I be more worried?," "should I relax and just try to keep everything light and calm?," "should I prepare for the end?," "should I expect things to go up and down for weeks to come?" It's almost more than a person can handle. And you are not just handling your own emotions and thoughts - you're also trying to influence Brian in a positive way. And that makes your role in this relationship even harder than Brian's in a way.

It seems to me the doctor would have said something to you if he thought it was time to "prepare for the end." Brian's had a tough fight right from the start and maybe that's, unfortunately, going to be the way it is for him until the day it begins to turn around. Let the medical folks know the state of uncertainty you're stuck in. Your sanity, emotional well-being is as important as Brian's and they need to help YOU, too.

Will keep the two of you close to my heart and hope for things to make more sense soon. You are both cared about.

Leslie

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