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Patkid

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Friends,

I need some lifting up.

Brian is so sick. I am not sleeping so this may be disjointed.

I am not sure if his 'weakness' and 'decline' are due to cancer or treatment. I hate that.

His diarrhea was so bad yesterday.

He is withdrawn, even from me.

He is not interested in anything.

If the phone rings he doesn't even pretend to have an intention of answering it.

His nueropathy is getting worse daily. Last night he said it is even up into his calves at this point. I am so worried the nerve damage will affect his organs.

He pretends that he doesn't stumble, but he does stumble.

When he drove to church on Sunday it was an adventure: he can't feel the pedals. In the interest of public safety he absolutely has to hold off on driving till this resolves a bit. The beginnings of that discussion have NOT gone well.

I love him so much.

I feel so freakin' helpless.

He doesn't want extra people around..........not even his kids..............and when I can't get him smiley with grandchildren tales there is something wrong. Our favorite, (shhh don't tell) Gabrielle, wants to come over and play checkers with her grandpa. Brian asked her to wait a couple weeks. That broke my heart for both of them. She loves him so much and misses their checker games and deep conversations about Bratz Dolls and Rainbows.

My middle son is being married on Oct. 22 in Florida. Brian is so important in his life. I have not even made any reservations for the trip yet, and the kids keep asking if they should move the wedding up. I have no idea. I only know that Brian could not go today. He would try, I know that, but he just could not make it.

There was a Cruise nite at the DQ last night. I offered to help him 'dust off' the '56 and go with him to take her for a spin. That used to be his second favorite activity in the world. He declined.

I am so sad.

I know we gave him his CPT-11 last Thursday in spite of low blood counts. Hopefully the labs on Thursday will offer opportunity for Aranesp, Neulasta and even some more blood products for him. Then he may perk up a bit.

Scans on 9-19

Onc visit on 9-22.

I surely do hope this chemo is 'getting the tumors'.

He tries so hard, but he just can't seem to find any energy. We pray everyday together and do our 5 fors together (thanks melanie) and that helps, but I know he is scared and feeling like he may have gone through all this agony for ???????? what??????.

Please pray for us and please know how much I depend on all of you.

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Oh Pat, you and Brian are being lifted in prayer. I hope things will settle down. Please remember to take care of yourself.

Psalm 67:1

May God be gracious to us and bless us and make his face shine upon us.

Psalm 68:31

Praise be to the Lord, to God our Savior, who daily bears out burdens.

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Pat,

Ok, you asked for an uplifting prayer and you got it!!!!

I'm so sorry to hear what you are going through..I truly am. The deep conversations about Bratz dolls and rainbows really got to me. I'll be praying that the scan on the 19th will bring good news and that Brian will begin to feel a little better very, very soon.

Melinda

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Hi Pat,

I am so sorry things are hard right now. I don't really know if the way Brian feels is the cancer or treatment, but it sounds more like it is from treatment. Hopefully, that's the case because 90% of the time, all of those things disappear once the chemo is stopped. It seems it normally takes the longest for the neuropathy to go away. Chemo is just so hard on the human body.

On all the other things you mentioned as to Brian's disinterest in things, ignoring the stumbling, not wanting people around, withdrawing from you, are all things I experienced with Don. Please try to not take it personal. It's just that they feel so sick (physically) and down (mentally) from the treatments that they truly don't have much interest in other things because they don't just don't feel well. Try to think about when you have been the sickest you have ever been, like from the flu or strep throat and multiply that by 100, and it's a little easier to understand how badly they feel.

I know that even knowing that, it doesn't help YOU feel better. You want your Brian back the way he was before. It's hard to get through the days living with someone you love so much that has changed so dramatically. Try to assume that all of the things are from treatment and it will get better once it's over.

Sending you all my love and hugs, Pat. Hang in there!

Love,

Peggy

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There is alot of good advice here- I won't add to that from a spouse's perspective because I just haven't been there- but I will tell you what worked frmo a daughter/caregivers perspective.

Medical issues aside--- (get everything checked and tell his doctor about everything)

But the way I got my father to participate in life was just NOT to ask him. He was SO anemic and SO run down and he had no energy at all and his balance and weakness made it hard for him to walk very much......I would plan days with him without telling what was going on. I would plan meals and just set them on the coffee table in front of the sofa without even a word. A few nibbles and bites and a few shows later it would all be gone. (BUT, had I asked him if he were hungry he would have said no)

I'd show up with a wheelchair and a picnic lunch and we'd go to the park or just to Target or to the zoo or whatever I could think up.

In dad's case, if you asked him- it was always no, not now, maybe later, I just don't feel like it. He just felt miserable and nothing sounded good and he did not think he would be good for anything.

But I explained to him that he could be sick on the sofa, or sick in a wheelchair going out or with his family or seeing visitors....at least with the latter the scenery is better and a bit more interesting than CNN or the History Channel.

He always was relunctant but always felt "better" afterwards. As long as we had thought of everything beforehand it was always pretty smooth. I learned that I had to keep his mind and his spirit occupied in all ways. Just laying around and "thinking" too much about everything can be so overwhelming and it made him good afterwards that he was "out" and part of the world again instead of stuck inside.

Maybe the best thing to do is not ask...and just DO.

It comes from the heart- and he will know it.

I hope things improve soon and I am saying lots of prayers for you both.

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Lovely Pat,

I am sitting here beneath you holding you up so your nose stays above the water. While I'm doing this, take a few moments and take some really deep, slow, breaths.................

Peggy made alot of sense. I know it is so painful to watch Brian while he tries to fight and has nothing left over to give anyone else. I'm truly amazed that he can still do his "5". That is encouraging and something positive to focus on.

Jim's neuropathy in his feet was really bad too. They were so sensitive but he had always loved foot rubs. I just changed the technique. If I started rubbing them very softly until his feetsies got used to the touch, then I could apply some pressure and it felt good to him. Probably didn't help him walk any better, but he said it did. Everyone's neuropathy is different, so don't attack Brian's feet without checking with him or I will hear him cussing down here in Oklahoma.

You know I stock the soft fuzzy towels and I have loaned them to others when they needed them. Peggy needed them once to put over her head so she couldn't see Don performing daring deeds. Perhaps I can lay one across your shoulders right now and you just lean in to it and feel the warmth.....

My heart is with you and Brian.

Lynne

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Pat, I wish I knew what to say. I hate that you're so sad, Brian so despondent. I hate that there's just no way to know what is causing the deterioration right now. I am so honored to be in your lives as you struggle through this, I just wish I could do more.

you truly are Superman and Wonder Woman, not for where you are going but for where you are right now. where you've been has given you your muscles, for sure, but your strength lies where you're standing (or sitting, or lying) - in god's care, by one another's side. I am in awe of your continuing grace and power.

a friend in 'the rooms' tells me sometimes that when he's most desperate, he imagines himself sitting in his higher power's lap. now, this is a big guy, 6'4", around 300 lbs. so it's quite an image. sometimes I imagine it as a kid sitting on Santa's lap in the mall. :lol: either way, he's a warm loving parent you can speak your wishes to and trust that they will be provided for. so I walk with god at my side when I am strong, and sit in his lap when I am not. at least, I try.

also, I second Katie's advice - some things should probably just be done. the line between respecting wishes and enabling depression is a fine one, but you know him well enough to walk it. you can't do too much about his physical state right now, but you may be able to proactively impact his mental state.

we are here to love and support you both, no matter what.

xoxo

amie

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Pat, first of all, I'm saying lots of prayers for both you and Brian. Next, I'm sending a ton of ((((((((((((((Pat)))))))))))))) hugs your way. I know how much hugs can mean when you're so worried about the love of your life. We all know what a toll treatment can take on patients. I'm praying that Brian will perk right up when his counts improve! Pat, just hang in there and remember you have so many friends here that are saying prayers and sending love!!!

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Pat,

I am praying for both you and Brian. I know by watching my mom, the direct caregiver needs to be prayed for as much as the sick! Your love for Brian is just so obvious. What I can tell you is that my dad, who is always a "goer and doer" had some weeks like Brian is having. It may be medical so definitely pursue those avenues but I do know with my dad he just had no energy not even for his only grandchild (my son). He missed his "cappy" and it was hard. There were days my son would ask me if his cappy was still sick and if he could play with him today. He came out of the darkeness and I pray that Brian finds his way out soon, whatever the cause. Love, hugs and prayers coming your way!

Tammy

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Pat,

I just don't have any words of comfort for you. I live with those same fears and can rarely find peace with our situations. Somewhere back a ways there was a "getting to know you" post about what would you do if you had the time. I never answered that post because at the time it was so depressing to think about the hurrican relief efforts, but that is what I thought...I'd take a leave from work, from Bill, from the boys...and I'd get my hands dirty doing something to make a difference. Ask me that question today and my unwavering answer would be that I would make the 7 hour (yes, 7 hours...Bill and I have done the mapquest) drive to Illinois and give you and Brian a hug. That's all I have to offer Pat...I wish I knew what to say.

Ironically, Katie's message struck a chord with me because over the weekend I was thinking the same things about Bill....he's just so lifeless and seems so lost. He's cancelled several dinners or gatherings we have had stating he just didn't feel good. So...yesterday I called him on my way home and told him to get some clothes on because we were going out to see a movie...at the cinema and maybe even grabbing dinner. He didn't argue, we went...he enjoyed it and admitted that he felt better but would never have gone if I had ASKED him to go. Maybe the trick...MAYBE...is to be firm.

All of our love and more importantly...ALL of our prayers to you both Pat!

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If his diarrhea has been bad he could be dehydrated as Joanie said. The chemo unfortunately takes the good with the bad. I don't have any great words of wisdom except to check with the doctor or the chemo nurse and let them know how crappy he feels. They may have an idea to build him up.

I like the not asking suggestion...so why not invite the favorite grandchild to come by for checkers. I hope he perks up soon.

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Pat,

I have you and Brian in my prayers, I hope "both" your suffering will be eased. Remember as the caregiver to keep your own strenght up. Please take care of yourself also. Again I will be praying for you. wish I had more words of wisdom.

You are in my thoughts,

Debbie

Husband Alan dignosed with Small Cell Lung Cancer limited Jan 10th 2005

1/18/05 started on Cisplatin and CPT 11

1/31/05 admitted to hospital with infection

2/17/05 new chemo Cisplatin and VP 16

2/21/05 admitted to hospital in an altered state due to decadron

2/26/05 released from hospital

3/1/05 re-admitted to hospital with bilateral pneumonia

3/31/05 released from hospital

4/22/05 after hospital review board it is determined chemo should be discontinued

5-9-05 chest radiation x 35 starts

6-28-05 last day of radiation

7/7/05 MRI of brain due to headaches and dizziness

7/12/05 confirmed Mets to brain 3 x 3.5 cm tumor, WBR x 10

8/1/05 start IMRT radaition to tumor x 16 treatments

9/1/05 treatments finished follow up MRI in about 4 weeks.

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Pat,

I have you and Brian in my prayers, I hope "both" your suffering will be eased. Remember as the caregiver to keep your own strenght up. Please take care of yourself also. Again I will be praying for you. wish I had more words of wisdom.

You are in my thoughts,

Debbie

Husband Alan dignosed with Small Cell Lung Cancer limited Jan 10th 2005

1/18/05 started on Cisplatin and CPT 11

1/31/05 admitted to hospital with infection

2/17/05 new chemo Cisplatin and VP 16

2/21/05 admitted to hospital in an altered state due to decadron

2/26/05 released from hospital

3/1/05 re-admitted to hospital with bilateral pneumonia

3/31/05 released from hospital

4/22/05 after hospital review board it is determined chemo should be discontinued

5-9-05 chest radiation x 35 starts

6-28-05 last day of radiation

7/7/05 MRI of brain due to headaches and dizziness

7/12/05 confirmed Mets to brain 3 x 3.5 cm tumor, WBR x 10

8/1/05 start IMRT radaition to tumor x 16 treatments

9/1/05 treatments finished follow up MRI in about 4 weeks.

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I am praying very hard for both of you. It is very very scary going thru this. They say the treatment is worse than the illness. This is what they mean. He is so very ill, because the chemo invades the whole body. Mike many times curled up in fetal position to suffer thru the chemo. They block everything out--as they are working very hard to deal with the side effects. :( Keep praying. I know it is exhausting for you. But hang in there--he needs you. Help him get thru this treatment. Always tell him hopefully tomorrow will be better. The chemo will wear off as the days go on. Strive for the good days. Survive the bad days and look forward to the "good days" . That's all you can do with chemo. That's all you can do with cancer. Don't give up. If you become negative and hopeless, he will also. You are strong, my friend. :) It will hopefully get better, and hopefully the chemo is WORKING. God bless you, pm me anytime,Nancy C

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Oh Pat, you have so many people here suffering along with you. And so many prayers going out to you both. I am so sorry for this setback.

You both are two of the most supportive people on here and my heart breaks that Brian is having such a horrible time and you are watching his decline. You are so scared as this is not your Brian.

But,this could just be the results of all the chemo he is getting, and will pass once he is off. Or this can be from the diaherra, as that could certainly can cause depression and break down the mechanism of the body.

I don't have an answer as far as the wedding, but as soon as they find out what is causing his distress, there may be something they could do to make Brian feel better. I pray for that, for him to just feel comfortable.

I will light a candle for him, and say meditation prays that Brian gets his strength back and feels better soon and you both to have better days.

Keep the faith as I know how spiritual you both are.

I wish I could express some good words of comfort for you, but all I can do is send prayers for G-d to help you both.

Maryanne

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Dear Pat,

I was so sorry to read your post. I know what you are going through and it is so darn hard.... please know that you and Brian are in my daily prayers. Hopefully Brian will gather up some strength to continue to fight, and you will gather up strength to continue to be his "everything", as I know you are. God Bless....

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Pat,

I don't have any magical words for you, but you shared some great ones with us. I'm thankful that you can be so very honest in what you said. Sometimes just putting it in writing helps, for me at least.

So every now and then--for a really good cause--I try to trick God. You know that part about needing to pray like children? I figure now's a good time to bring on the kids. I'll have my students pray for both you and Brian tomorrow. See if we can bend the Big Guy's ear a bit.

Take care of your self, and keep us posted.

:) , Kelly

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