Any insight for Brian's caregiver/friend/wife/fan/admirer?

[ma's kid]

Pat,

Wanted you to know that you and Brian are in my prayers...please take care of you, too.

Your love shines through, Pat.

Libby

[SBeth]

Dear Pat,

I'm going to ramble a bit here as opposed to gathering my thoughts and making any sense; bear with me.

You and I are obviously on the same path, though we reached our fork in the road and opted for Hospice as opposed to further treatment. Many of the things you post, or have posted, about Brian are right on target for Bill as well. I cannot, nor can anyone I think, tell you if it is the chemo or disease causing the problems Brian is having...but I can share some perspective from my own situation with Bill. During and shortly after we (Bill) finished chemo, he felt terrible. We all know that the treatment can be harder on the body than the actual disease. As we have moved further from chemo and much of the rx medication that goes/went along with chemo, he seems to feel better, much better. I feel like we are sitting on a bridge over a raging river; beyond the struggles of chemo, yet not quite to the other side and into the rapid decline from the cancer taking over.

The confusion and memory loss continue for us as well, though not nearly as prominent as before. Bill's appetite remains obsolete, while Brian's appetite is getting stronger...I think this is a good thing for Brian. The fatigue and the long and lonely (for us both) hours that they spend sleeping leave us both with alot of time to try and analyze or understand things that we may never be able to understand. I'm sorry Pat. I'm sorry that we do not live close enough to be of more physical support for each other, but please know how much I understand all that you are going thru. I hope that tomorrow will be a better day for you!

All our love to you and Brian!

[Frank Lamb]

Pat,all I can say is that if I were on chemo for that amount of time without a break I am sure I would be worse than Brian is.That is a long time to constantly tear your body down.A little break might be a good idea.Remember the chemo keeps on working in your body for a good while even after you quit it.

Unfortunately even with all the good chemo does,it also does a heck of a lot of damage as well.

Keeping you both in my prayers,and thoughts.

[Ellen B.]

Pat and Brian,

Wish I could be of any help!

You are both in my prayers.

Ellen.

[Ann]

Dearest Pat...my heart is truly breaking for both you and Beth. Reading your posts bring back so many memories of the path I was walking almost three years ago to the day. You spend so much time alone, while they sleep, that your mind can make you absolutely crazy. Like others, I have no advice about whether this is caused by the treatment or the progression. I do know that Brians body has taken a real beating from Chemo for this length of time. I know that both Bill and Brian are so well loved and cared for. This is what really matters! I wish I was closer to lend support and help both of you during this tough time. I'm sending both of you lots of hugs, love and support. I'm saying prayers and begging God for positive answers.

((((((((((((((((Pat and Beth)))))))))))))))))))))))

[SDianneB]

Well gosh, Pat. I don't know what to say. I have no clue what it is or might be, there are so many possibilities with this bleepin' disease. I just hope you can take out some time for yourself to rest and think. I believe it will not just help you to cope, but will improve the time you spend with Brian.

The two of you are most fortunate and blessed to have each other. If they start caring so much how you act in church when you're a cancer patient, well then, might as well just start going to Kroger on Sundays, huh?

This is extremely difficult for you both, I know. Many prayers and hugs your way.

Di

[LynneH]

Pat, I pretty much have my arms around you and Brian all the time, but I'm squeezing a little harder right now. I so clearly remember having the same unanswered questions burning in my mind every hour of every day. Sometimes I asked the doctor and sometimes he said he didn't know and sometimes he gave me an answer (or made one up to give me temporary comfort). When Jim was sleeping, I would go into the other room and play solitaire on the computer and imagine that he was just sleeping peacefully and everything was okay. This was just to give my body and mind a break. Like Brian, Jim was taking some sort of treatment almost non-stop from Jan '04 to March '05. His fatigue and confusion just gradually became worse and worse. I don't know if it was the cancer or the treatments.

For Jim, it was important for him to do treatment as that made him feel like he was doing something to battle it. However, in March, he talked about stopping the treatment for a while because he had become so immobilized. Had he not had the brain tumor/swelling complications, he may have gone ahead and decided to stop to see if some quality of life could have been restored. Don't know. I do know that he took the route he needed to take. And he always knew he could change directions at any time.

Sounds like that is what Brian has done as well. As long as they can choose their path, that in and of itself provides some comfort to them, although maybe not a physical comfort. You and Brian are amazing and wonderful and my heart hurts so badly that you are dealing with such pain.

I'm still squeezing, but it's a gentle squeeze so you can still breathe......

With love,

Lynne

[ginnyde]

Pat, (and Beth)

Too many sad memories. I don't have any answers as to whether tx or progression. I do know that my dear Earl was willing to take any tx they offered him until they told him there was nothing more they could do. Total and complete weakness was the worst problem, he could not even cross his ankles for the last few weeks.

It is, in some ways, the worse time. Scared all the time, listening all the time, and hopefully doing and saying all the right things. But as so many have said, the most important thing is to just love Brian and Bill. Please know that I am so sad for you and wish there was something, anything I could do to change this.

You are in my heart.

[flwrjunke]

Dear Pat,

I am so sorry Brian isn't doing well. Please know that you both are still in my prayers.

Patty

[Leslie221]

Pat,

The weight on your shoulders (and your heart) must feel heavier and heavier each day. You two have had so much to deal with, no "vacations" from treatments and side effects, and not a lot of chances to give a good, loud "WOOOOHOOO!" That kind of pressure and frustration would be hard to bear for three days in a row, let alone 9 months!

I don't have any medical advice or knowledge. I'm sure the uncertainty is so hard for you both. Does seem like a really good sign that Brian is getting his appetite back, wants to do normal things - even feeing embarassment over the church incident is actually a sign that he still feels enough like himself to care. I think when people are really, really sliding downhill they reach a point where they just feel so badly, they don't care anymore what other people see.

Wishing you both happier days and more strength to cope with such a heavy load. If only Brian's doctor could be more definitive. I think if he said, "Hey, look, Brian's body has been through tremendous stress for 9 months. He's bound to be exhausted. Don't worry about it. Relax, take all the naps you want. Things will get better," you'd both be fine. It's not knowing what all this means that is so hard to cope with.

Sending caring thoughts,

Leslie

[Kaffie]

Prayers sent your way.

You have both been through so much, non stop.

I'm so sorry things aren't going better than they are right now. I know nothing of what you are going through, thank God there are other wives here to help through the emotional turmoil.

Thinking of you

Kathy

[cindi o'h]

Pat,

I wish I had some words of wisdom for you... I don't have a one.

All I can say is that I think about you and Brian many times throughout each and every day.

You both remain in my heart for all the suffering that you do.

I recently lost my old TimmyTom (last week). We were together for 18 years. Pat, he was just a cat. I was a wreck with his suffering that lasted just 30 hours before he died. I mean I was a MESS. I cannot imagine the depths of despair and helplessness that you are going through with your love, with your husband, your best friend, your pal. TT was just a cat.

All I can say is I know freshly about a teeny tiny bit of what you must be going through. Don't know that I could do it, Pat. God must be carrying you through.

Prayers for you and Brian. (And Beth and Bill)

love,

Cindi o'h

[J.C.]

Pat,

Loving Brian with all your might may be all

he needs at this time, extra hugs with a sunny

smile, a hand patting for nothing and specially

keeping your worries hidden.

I know you do all that and more, but I only

repeat what life showed me.

The body works all the time after constant

treatments and we never know exactly what

is really happening regeneration takes the

same face as progression very often.

I went through many times thinking the fight

was finished just to see inside of a few weeks

so much progress that made life nearly normal

that I came to accept each day as it presented

itself, but always with hope and so much love

for Mike that I am now empty after more than

two years and all I can still think is how

much love was present and how much it helped

both of us.

Prayers will be there and a candle is already

burning for better days ahead.

Love

J.C.

[Darci]

Pat, I don't have any advice or words of wisdom for you. I hope that it helps to know how many people here love you and are praying for you and Brian every day.

My heart is warmed by the deep love that you and Brian have for each other. I am sure that you love and faith will help you through.

Be sure to take care of yourself too...I really like the idea of the monitors and walkie talkies.

[Kel M]

Hi Pat,

Though I don't have any particular wisdom to impart, I would say this: trust your instincts - they will guide you in your journey.

I also agree with the people who've posted before me. Keep loving Brian by simply being with him and enjoying your time together.

And - take a little time to be kind to yourself each day, Pat.

Lifting you both up in prayer and hugs!

Kel

[Stephi]

Pat,

I too have no answers for you and Brian. I do however have many prayers of comfort, hope and courage for you both. My God continue to have his loving arms around you all.

Stephi

[daggiesmom]

Just thinking of you both. God Bless.

Joanie ((()))

[hollyanne]

Pat -

I will pray for strength and peace for both of you during this time period. I will also pray that you receive direction on what to do next, and some answers and guidance. I wish had some great words of wisdom, yet I know that you two are in God's graces and will be taken care of.

Love,

Holly

[Ladyintheglen]

Hi (((((Pat))))),

My prayers are with you. I can't imagine what you are going through right now. Unfortunately I will soon enough. Neuroendocrine is truly a beast. I am holding you both up in prayer as I have always done since I met you. We are strong and we can and will walk through this. God bless you both and I pray that Brian just needs to get a second wind to continue his gallant fight.

Cheryl

[jdjenkins]

Dear Pat,

Your post reminded me so much of what my Mom is going through right now. She is on the same path as you and Beth. I know how completely overwhelming the fear and sadness can be. I pray that Brian gets some strength back soon. My Dad is in hospice now and actually feels a little stronger since stopping his treatment. He no longer shakes so much and has gained some weight. It sounds like you will be having a treatment break soon, hopefully that will help Brian regain some strength. My heart breaks for you and Brian.

Denise

[Skye]

Pat,

It does sound like he needs a break from treatments.

Like everyone here has said, please take good care of yourself. The idea of the moniter is great, I suggested this to my Aunt as well.

Your situation sounds so much like what my Aunt is going through. I can not imagine what it must be like watching my husband suffer so. You both are very strong, that means ALOT!

Sending up prayers for you, Brian, and Beth.

Many blessings!

[jorja]

Dearest Pat,

I think what Brian needs is a chemo break (just like everyone else has said). My dad had chemo from sept. until february. He was very weak at the end but has since regained strength and appetite. My prayers are constantly with you and Brian. It is a good sign that he has some strength and is not always in bed lying down. That should give you hope. Just know that we are here for you....(((hugs)))

love,

jorja