Mrs. W in IA

[Jonicont]

Stiff upper lip and all that. Feel free to call if need be

[The Black Canary]

Hey

[Iowan]

Just thought of something GW, if you need any information about Rochester or Mayo, let me know. I went to HS there, my old man lives there now, my mom and step-mom have both worked there (between St. Mary's and Methodist), my buddy's wife works there, and I get up there on a pretty regular basis. I know where a lot of places to shop (in case you'd have to do any kind of extended stays), eat etc are.

I can't promise I'll be that helpful, but if you have any questions about places to eat, stay, etc, or any kinds of diversions for your little ones during this tough time, I'd be more than glad to give you the best of my knowledge! Good luck again!

[CooleyGirl]

GW, I'm so terribly sorry to hear this. My heart goes out to you and your family. I'm praying that the 2nd opinion turns out to be another diagnosis. Sadly, UR and I lost our second Mom to ALS 3 years ago last month. If it does turn out to be ALS, God forbid, you should contact your local ALS chapter. http://webia.alsa.org/site/PageServer?p ... contact_us The local chapter here in CT was able to work miracles in our time of need in terms of getting us help when we needed it most.

If you need anything at all, please feel free to call on me, I'm here for you.

[Given to Fly]

My thoughts go out to you and your family GW

[blessedcurse]

There is nothing I can say that has not already been expressed far more eloquently than I ever could. I think you got a good family here to help you along. I also think you got a pretty good sense of what really matters. I'll light a candle up here in the northland tonight, send only the best of thoughts your way and hope in some way its marks the road to a positive second opinion. Strength and peace to the both of you.

[Fool No Where]

May your strength give us strength
May your faith give us faith
May your hope give us hope
May your love give us love

[njMark]

GW, I met you in Athens this last homecoming and you gave me some good advice about being a Dad and all that goes with it. I still remember it and it seems really crappy that somebody that cool should have to endure this along with his family. If there is anything I can do don't hesitate to ask. Best of wishes and luck to you and yours.

[lynne]

GW - you, your wife and family are in my thoughts and prayers.

[lajakesdad]

GW, your post brought me to tears. So sorry to hear. Stay positive and know we are all pulling for you.

[Swamp]

I read this yesterday morning and was floored. I spent all day yesterday thinking of yall and what I could say
to cheer you up and express our feelings about the situation but I was left feeling empty inside. Although
we only see you once a year and have not met your wife, we feel very close to you and have anticipated the
time the 4 of us could get together. We love you GW and are hoping and praying for a misdiagnosis.
If it's any consolation, the world is suppose to end on Saturday.

[beantownbubba]

If it's any consolation, the world is suppose to end on Saturday.

Maybe it's the hysteria that comes from helplessness, but right now this feels like the greatest thing i've read in years. And sorry, Clams, but there's no bout a doubt it: In a matter of minutes you are out as my signature. I've got a new philosopher/guru

[sg207]

Damn GW, I don't really have the words. Nobody should have to deal with this kind of news. Here's to hoping that next appointment can explain why this diagnosis is wrong.

I'm not much of the praying type, but I plan on changing that tonight. Hang in there.

[LBRod]

You good people keep hanging in there, and we'll keep hoping and praying for the best.

[RevMatt]

I just read this thread now and I am praying for you and your wife.

Two years ago I learned that I had multiple myeloma, an incurable form of cancer. It was stage 3 -- the highest stage for blood cancers -- with over 90 percent of my blood cells cancerous. I decided to fight and against all odds I am still standing. In fact, I am thriving. If you had told me two years ago that I would be the happiest I have ever been at any point in my life I would have told you that you were crazy. But I am. Last month I had a whole battery of psychological tests. The psychologist was amazed and told me that he'd never seen someone in my position doing so well mentally. He attributed it to my faith. I said, yes, faith is part of it. But I also made the decision to thrive, not just survive. And music is a big part of that.

Here is what I've learned.

1) When you first get a devastating diagnosis like incurable cancer or ALS you may wonder where you will find the strength and courage to fight and go on. But most of us find it pretty quickly. You won't find it immediately, but you will find it sooner than you think. Human beings are amazingly resiliant.

2) You are not dead. In fact, the moment you put your feet on the floor you are just as alive as everyone else on the planet who woke up this morning.

3) You have decisions and options. More than you think. Do all the research you can on your disease. Find out the issues and debates among researchers.

4) Music, novels, poetry, films, short stories are powerful things. At my lowest point, when I was lying in a hospital bed during 96 hours of continuous chemo, I didn't know if it was worth it to keep on fighting. For what? So I could go back to work, bust my ass, just to pay more alimony? I could die with dignity. I had no fear or worries about what was on the other side, so giving up was an option. They'd give me a boat load of drugs to ease my way. Then I heard Drive By Truckers for the first time. Specifically, "World of Hurt", "Shut Up and Get On The Plane", "The Living Bubba" and a bunch of other great songs. It awakened something in me. I remembered who I was. Fuck dying! I wanted to get back with my band, write more songs, play more shows. Ride my motorcycle real fast. Hang out with my kids. Patterson said, "It is great to be alive!" Hell yeah.

5) Cancer may kill me but it will never defeat me. Once we decide we want to live and thrive, it is a powerful thing.

6) Happiness is a choice.

7) Adversity is where we find out who we are. How I fight this and go on with the rest of my life is the legacy I will leave my children.

8) Faith is important. But we also need a reason to live. Without a reason to live, all faith will do is take away our fear of death. Yes, taking away that fear is a powerful thing. But to survive we need a reason to go on living.

9) Many things were out of balance and wrong in my life around the time I was diagnosed with cancer. I had to acknowledge this and refuse to go back to where I was. I had to make major changes. I asked myself, when was I the happiest in my life? What was I doing then? I was happiest when I was 19 years old and playing in an indie band. So I had to go back to that. No, I will never be 19 again. But I am in two bands. In July one of my bands will be opening for The Outlaws. I am working on a record. In 2011 my goal is to play at least fifty shows. "I can't die now because I've got a show to do."

10) I make no apologies for doing the things I need to do to survive.

[Erdlivz]

This board makes us all better people. I believe that and never take it for granted. Thanks for sharing RevMatt. I love this place and don't know what I'd do without it.

GW and family: All the thoughts I've had the past two days have been for your beautiful family. The pics you took in Athens for your daughter with the bear were testament of y'all. Great, great peoples. I hope y'all are doing well and going strong.

[Gator McKlusky]

What they all said--- so sorry to hear about this GW.

[GW in IA]

Tired all day long, but can't sleep at night.
Scatter-brained as hell lately. took the kids to school/sitter this morning and had to drive all the way home and back to town because I forgot 1. lunch for the 6 yr old, And 2. bottles for the 7 Mo. old. Been doing that kind of stuff alot these past few days. Leave the worksite to go get a tool from the shop, get to the shop and can't remember why I came here in the first place, give up, head back to the job, only to remember halfway back, why I went in the first place.
No matter what Mayo has to say, these days right now, are going to look funny in the rear-view mirror.
the highs and lows are evening out. We still cry alot more than we did before. Luckily we always laughed more than our share, so while that may be on the downslide, there is still plenty of laughs.
Both the Drs. talked about a greiving period, and I kind of thought they were getting a little new-agey for us. Greiving is for after, right? Apparently not, I can really see most of the steps comming and going, but they dont stay in any order, and they dont run a full course. I'll be angry for a while, and the whole time, shes scouring the internet for other causes (denial) and oddly most of my time is spent in acceptance, with lots of fear, anger and saddnes thrown in.
Our little girl knows nothing yet, yet, shes six, shes not stupid, had to seem a little strange when grandma notsomuch showed up now two weekends in a row...
We cry, then pretty soon we laugh at each other for crying, and when she leaves I cry for all the laughs we'll miss if this all goes south.

Then we get out of bed and get the kids ready for the day
And, I'm just the bystander/support staff, not even the one facing this damn unfair fate, I'm scared for her, so much so that I have to stop what I'm doing and sit down once in a while. She has to be horrified! She is either very confedent in a better diagnosis, or remaining stubbornly, blissfully, uninformed. Either way good on her.

[Lurleen McQueen]

Mornin' GW. I have so much love and empathy in my heart for y'all. Obviously, I wish I had the magic wand to make it all sparkly again.

If it's any help, you can attribute some of the forgetfulness to getting a little older (didn't you just hit the 40 mark recently?). Just yesterday, I was headed to the copy machine room and ended up standing in the kitchen scratching my head and wondering what I went in there for...happens more and more these days.

Everyone here and even friends of our friends who don't know y'all are pulling like hell for promising words from Mayo. We've all got the 31st circled on our calendar.

Meanwhile, Rev. Matt had some incredibly inspiring words that will help all of us.

You mentioned the Dr.'s talking about the grieving period and I remembered a book that helped me when my best friend was living with and dying from breast cancer. It was called Final Gifts - Understanding the Special Awareness, needs and Communications of the Dying by Maggie Callanan and Patricia Kelley.

One of things I used to ask my therapist about how to be a good caregiver/friend for Stella went something like this, "If I acknowledge this she isn't getting better, am I exhibiting a lack of faith? How do I balance the 'things might get better' and 'maybe a clinical trial will work'-type hopefulness with my friend's need for me to be there for her and with her as she made her preparations to move through into the next phase of life - whatever happens when we finish here? Does reading this book mean I've given up hope?"

Regardless of whether or not I found those answers, I think that the book helped me be just a little better listener.

For the longest time, I would hide the book from her b/c I didn't dare want her to know I was reading it. At some point though, since we shared the same therapist, I think she said something like, "My husband Kendall is reading this book and you might find it helpful, too." She was honest as the day is long and called 'em like she saw 'em.

The two of you will gain strength from each other and when it dips a little low, pop in here and get your tank refilled and refueled. We're much cheaper than Exxon or BP.

We love y'all.

[beantownbubba]

Thoughts and hugs, GW. Nothing much else to offer, but u've got all i've got to give of both of those.

FWIW, it's always seemed to me that kids know EVERYTHING. But they know it at an age appropriate level which means they get a lot of things wrong. Some direct explanation of the changes she's undoubtedly noticed consistent w/ the way you usually communicate with her or explain things to her will probably be a lot less scary to your daughter than whatever conclusions she's drawing on her own.

I think lurleen hit on a very difficult issue. I don't have the answer but i think it's worth acknowledging so at least you know you're not the only one who's been there, GW. The balance between "realism," acceptance and optimism is incredibly difficult to find and maintain and from personal experience can be a big source of conflict among family members. I'm not familiar w/ that book but it could be worth checking out.

Thanks for that, Rev Matt.

[Clams]

This is the most inspiring thread in the entire history of the fucking internet. Carry on GW, and carry on Rev Matt, BTB, Lurleen and everyone else.

[GW in IA]

This is the most inspiring thread in the entire history of the fucking internet. Carry on GW, and carry on Rev Matt, BTB, Lurleen and everyone else.

I guess I'm glad you think so Clams.
When I re-read in the morning, it looks pretty whiney and makes me feel the need for another shower
Poor grammer, and spelling aside.
Durring the day this shit looks embarrasing, but I know some night, sooner than I'd probably like, I'll be back spilling it all again.
If the thread inspires you, wonderful.
If you see it as attention seeking, or somehow self important, please just don't read it. I'm not sure why it feels good to vent here, but it does.

[The Black Canary]

This is the most inspiring thread in the entire history of the fucking internet. Carry on GW, and carry on Rev Matt, BTB, Lurleen and everyone else.

I guess I'm glad you think so Clams.
When I re-read in the morning, it looks pretty whiney and makes me feel the need for another shower
Poor grammer, and spelling aside.
Durring the day this shit looks embarrasing, but I know some night, sooner than I'd probably like, I'll be back spilling it all again.
If the thread inspires you, wonderful.
If you see it as attention seeking, or somehow self important, please just don't read it. I'm not sure why it feels good to vent here, but it does.

Spill away GW!!!! Sometimes just getting it out, into the ether every now and then does a body good!!! We/me are here for you!!!! let it rip!!!! Nothing whiney about it!!! nothing ever whiney about things such as this and never be embarrashed about pain, frustration and what not concerning the ones that you love!!!!

[Clams]

This is the most inspiring thread in the entire history of the fucking internet. Carry on GW, and carry on Rev Matt, BTB, Lurleen and everyone else.

I guess I'm glad you think so Clams.
When I re-read in the morning, it looks pretty whiney and makes me feel the need for another shower
Poor grammer, and spelling aside.
Durring the day this shit looks embarrasing, but I know some night, sooner than I'd probably like, I'll be back spilling it all again.
If the thread inspires you, wonderful.
If you see it as attention seeking, or somehow self important, please just don't read it. I'm not sure why it feels good to vent here, but it does.

GW you and the Mrs are gathering the strength you will need to get through. You can and will do it. You aren't whining; you are dealing with your situation. I do not envy you but I am inspired by you.

[beantownbubba]

This is the most inspiring thread in the entire history of the fucking internet. Carry on GW, and carry on Rev Matt, BTB, Lurleen and everyone else.

I guess I'm glad you think so Clams.
When I re-read in the morning, it looks pretty whiney and makes me feel the need for another shower
Poor grammer, and spelling aside.
Durring the day this shit looks embarrasing, but I know some night, sooner than I'd probably like, I'll be back spilling it all again.
If the thread inspires you, wonderful.
If you see it as attention seeking, or somehow self important, please just don't read it. I'm not sure why it feels good to vent here, but it does.

Don't know why you feel this way, unless it's some Midwestern thing, but you're wrong. Keep it coming, whatever it happens to be at any given moment. Don't give it a second thought. Literary and grammatical merit are irrelevant* and even if u were whining, which you're not, it would be more than fine. This is, or at least i hope it will be, the place you can go, the place where it's safe to be you, and that includes all the "you's" there may be over time. It's also the place where you can work out who you are and how you feel at any particular time. Just go for it, if it feels right to you, then it is. All we can do is be here for you, so please let us do that for you. It's an honor and a privilege.

*But it is pretty funny to misspell grammar in the sentence about poor grammar and spelling

[Tequila Cowboy]

GW, for what it's worth I have never for one minute thought you were coming across as whining. I can understand how it might feel that way to you but, trust me, it doesn't come off that way to us. You do what you need to do, rant, rave, ask for help or whatever it is you need to do. Every single one of us is behind you and wants to support you and your family. Do what you need to my friend.

[pearlysnaps]

Yeah, GW, you're not being whiny at all. My heart really does go out to you and your wife and kids, and you have been in my thoughts. Even though we've never met beyond the confines of this interweb board, your news has really had an effect on me. Please do come here and vent, scream, wallow, or anything else you need to do to get through your days. We're here for you anytime you need it, man.

[CooleyGirl]

Yes, GW, think of us all here as your safe space. We'll support you no matter what. Say whatever is on your mind, and don't give a second thought to how it comes out. We're not going to get out our red markers and correct your grammar, we're going to give you virtual hugs, hold your hand, and just listen as best we can.

I know how hard this is. When my second Mom, Mrs. Q., was diagnosed with ALS, it was the same way. All the stages were coming at you at once. But they came and went, and had no ryhme or reason to them. All you can do is take them as they come, one breath at a time. Let each emotion come as it will, breathe through it, and take the next breath. If you need to stop and sit for a minute, do it. If you need to scream, go for it. If you need to cry, cry. If you need to curse, do it (though maybe not in front of the kids ) Whatever you need to do, you can do it all here, we're here for you. I hope you will come here as often as you need to. Don't be shy about asking for what you need, either, I know I would be willing to do anything within my power to help, and I know a lot of others around here would to, all you have to do is ask.

[Clams]

This is the most inspiring thread in the entire history of the fucking internet. Carry on GW, and carry on Rev Matt, BTB, Lurleen and everyone else.

I guess I'm glad you think so Clams.
When I re-read in the morning, it looks pretty whiney and makes me feel the need for another shower
Poor grammer, and spelling aside.
Durring the day this shit looks embarrasing, but I know some night, sooner than I'd probably like, I'll be back spilling it all again.
If the thread inspires you, wonderful.
If you see it as attention seeking, or somehow self important, please just don't read it. I'm not sure why it feels good to vent here, but it does.

GW you and the Mrs are gathering the strength you will need to get through. You can and will do it. You aren't whining; you are dealing with your situation. I do not envy you but I am inspired by you.

Okay maybe inspired wasn't a good word. I think I got carried away by Rev Matt's post.

[PeterJ]

I hate whining. I have a sign in my classroom that says no whining. Whining is for self absorbed ass-hats. Not once in this thread, or anywhere else on this board have I thought of you as whining, nor will I think of you as whining when it comes to this. You have every right to feel any and every emotion that you do. Stay strong man.