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Thanks, and a small update

Wednesday, September 22, 2010

It continually amazes me: the outpouring of love and support from virtual strangers, the prayers said, the candles lit, the positive energy sent. It is absolutely overwhelming, and I believe I owe a lot of my ability to hold up here to you guys and your faith.

Thank you, from the bottom of my black little heart, and God/dess bless each one of you for your help in this time of trouble. Don't ever think you can't do anything to help - just being there is an amazing source of strength for people who have just about run out of their own.

ANd on a practical note, I've discovered that when actual in-the-flesh friends say, "Just tell me what I can do to help", you can do just that! I was so consumed with worry over fire wood (winter's coming, and soon, up here), hay in the barn and crops in the fields, repairs that absolutely positively have to be done ASAP. I turned to my local best friend and the best politician/delegator I ever knew, and suddenly everything is taken care of. Amish people are cutting wood in exchange for leftover hay. A handyman is doing handyman stuff because he owes the friend money (no charge to me.) Food is showing up. A half dozen warm brown eggs. A big bowl of beets and potatoes. I could (and do) cry.

I don't remember it ever being like this in the city. It's my impression, right or wrong, that country people pretty much leave one another alone unless you need them, then they're there in force. Once again, God/dess bless each and every one of them.

For what it's worth, John hasn't looked and felt this good in a while - certainly before he was taken off to the hospital. Tonight I fed him a local free-range, no antibiotic etc chicken, stewed in Chinese herbs, in a white sauce with local peas over some nice brown rice. You can feel then nourishment - above and beyond the vitamin and nutrient counts - in every bite.

Meanwhile, I'm pursuing the "second opinion" deal at Mt Sinai in Manhattan, full bore. Probably Friday, by next Wednesday at the latest, he'll have a complete new work-up by one of the best hepatic oncologists in the country, if not the world.

I am so blessed.

  
  Member Comments About This Blog Post:

STARLASUE 9/25/2010 10:46AM

    I knew you were surrounded, protected and loved. Thanks for giving your friends and neighbors the gift of being allowed to help. It is something we all need to do when someone in our circle of love is hurting. It is a win-win for all of you this giving and recieving cycle of care.

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MORTICIAADDAMS 9/23/2010 10:54PM

    Your friend sounds like a Godsend. Bless her and you. Sending prayers and hugs.

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JANEDOE12345 9/23/2010 5:14PM

    Just saying hello and sending good vibes to you and yours.
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Pam

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LEMONSMILES 9/23/2010 3:47PM

    Dear Scooter: What can we all say to mend a broken heart from sadness and shock.I haven't read your blog before but I am sure all of God's love and helping soul does indeed bless you both during this deeply sad period in both your lives. I have had 2 kidney transplants, and am now waiting to see if I have cancer of the kidney for the second time.Thank goodness I had the cancer in one of my old kidneys. I look at life in a very different way than others. I am sure you do too. These sorts of things are totally life changing - in a very spiritual way. I had my first when I was 21 then again 10 years ago when I was 38. Not easy. I was lucky to of had been born 3 times...if you follow me. As for the food my darling, you deal with that when you can. Yes, it is a realisation that one needs to look after one's self - at all cost - but when you are ready...it is understandable. Our prayers and energy from all over the world are with your dear husband, John and his obviously beautiful 30 year soul-mate and partner in life - you! My strength, and may God be with you dear Scooter. Victoria xx

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SHERYLDS 9/23/2010 2:51PM

    I'm glad your local angels came out in full force to lend a hand. My warmest wishes to you both. Know that many of us will be whispering your names in their prayers.

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LINDAKAY228 9/23/2010 10:45AM

    I'm so glad you are getting some local help to take a lot of worries off of you so that you can focus on John. I'm also glad that he's looking better right now. I hope the second opinion goes well and he can get a transplant and have many more happy years with you. You will continue to be in my thoughts and prayers.

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DANCINGGARDENER 9/23/2010 8:19AM

    Just reading how folks are helping you, helps us. Thank you so much for such a reassuring assessment of our species. I grew up out in the country but now am a die-hard village dweller. I can tell you that city mice are just as fast to help if asked.... it is the asking part that is so gosh darn difficult.

I just wish I were one of your in-your-face friends... sigh, I'll just have to let those luckier than myself feed and love you in person. Blessed Be!

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(had to fix my spelling)

Comment edited on: 9/23/2010 8:25:36 AM

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JRSWHIMSY 9/23/2010 8:06AM

    It sounds like you are already doing what many people don't - telling people what you need. Many folks in your position are overwhelmed but don't ask for help so as not to be a "burden". And those people's friends are feeling helpless not knowing what to do, their words seeming to fall shallow. You're blessing other people by giving them a tangible way to help, just as they're blessing you.

Keep the faith my friend, from wherever you get it. I'm glad you're surrounded by so many good people!

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SLIMMERKIWI 9/23/2010 2:40AM

    Having been brought up in a rural area, I would have to agree about the "common folk" sticking by their fellow man and helping when help is needed!

I am glad that they have stepped up to the mark:-)

Kris

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SUZYMOBILE 9/22/2010 9:47PM

    I'm so sorry I've been out of touch! How wonderful that you have a bit of hope to grasp! I can't help but think everyone's good thoughts and prayers are bringing better things your way.

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2BMYOWN 9/22/2010 9:44PM

    Awesome! I'm so glad everyone is rallying 'round you guys when you need it most!

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HIPPICHICK1 9/22/2010 9:20PM

    It's awesome that the Goddess works in many ways and with many folks to help you through this rocky time.
Brightest of Blessings!!
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ALICIA214 9/22/2010 9:10PM

 

It is amazing what a cry for help can bring, it restores your faith in human nature, and WOW the members on this site are truly wonderful, and I
personally never under estimate the power of prayer.
I hope you and your Husband will live a Happy Long life. God Bless.

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PUDLECRAZY 9/22/2010 9:10PM

    emoticon

Wishing you the best!

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LOULOUBELLE2 9/22/2010 9:07PM

    Miracles do happen and you and your DH are experiencing them. May God (God/dess) continue to bless you as your Sparks friends continue to pray for Your and your family. AND Country people do take care f their own. City people to do I believe, but in a different kind of way.
Hugs, Lovely Lady.

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MERRYWON 9/22/2010 8:56PM

    It's awesome to have good Christian friends!

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Another unknown

Monday, September 20, 2010

The "inoperable tumor" that made him a non-candidate for a liver transplant appeared virtually out of nowhere. In fact, it appeared following a request for an MRi on a Friday that wasn't fulfilled until the following Tuesday. Reason? Radiology had it listed as already having been done that Saturday morning.

I'm the last person to be a Conspiracy Theorist or anything, but I do know that people make errors. So I sent this whole package of information off to my favorite doctor, the one at Mt Sinai, and he said, essentially, "Hmph. Give me a minute" Five minutes later I got an email from another guy at Mt Sinai who is apparently the top liver cancer doctor in the US, bar none, and he offered to review the case for me if I could get him the CDs with the CT scan with contrast. Rather than send the most current ones (that I have doubts about) I sent the ones from two weeks ago, at our original hospital. He should have them tomorrow and by this time tomorrow night, we should know a)if my husband has liver cancer and b)if there's anything to be done about it.

Is this a bereft woman grasping at straws? Maybe, sure. My husband is my soul mate, and we've had thirty years together. I love him well beyond reason. Yes, I will survive without him if I must, and I"ll do a fine job of it, but I'll be damned if I'm going to lose him to a clerical error.

Tune in tomorrow.....

  
  Member Comments About This Blog Post:

BETHGILLIGAN 9/23/2010 8:16AM

    Prayers are with you and your husband!

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SUZYMOBILE 9/23/2010 7:08AM

    The moral of the story: Never, ever, ever give up. Wow, are you ever doing the right thing!

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STARLASUE 9/22/2010 8:51AM

    Grasp baby, grasp! Never give up advocating for him or you. It is harrowing but worth it. Give it all you got. Prayers and love continuing to flow your way!

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PENNYAN45 9/22/2010 12:55AM

    Our family has had a miracle come from the doctors at Mt. Sinaii. I hope you do too.

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GRAMMIE1959 9/21/2010 12:30PM

    Medical cruelty...Keep us posted PLEASE.

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I pray for a full measure of strength for you and yours as you navigate this turbulent time.

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Vivian

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SHERYLDS 9/21/2010 12:21PM

    Hang in there. Wishing you both all the love and strength to get thru this. emoticon

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DANCINGGARDENER 9/21/2010 6:42AM

    Strawgrasping is the art of the irrationally in love. He has one lucky soul to be mated to yours. Rock on with your bad self.

love you, Maud


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HIPPICHICK1 9/20/2010 9:24PM

    My thoughts are with you and your family. I'm sending you strength and positive vibes, my friend.
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MORTICIAADDAMS 9/20/2010 9:07PM

    My prayers are with you. Hoping for the best.

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JRSWHIMSY 9/20/2010 8:58PM

    Good God woman, yes! Grasp at all the straws you can find and if you can't find any, make some. There is always hope, if only the smallest glimmer.

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MTNGRL 9/20/2010 7:43PM

    Prayers are being said for your husband and you from here in WV. May God's healing touch reach out towards him. May the physicians use all of their God given skill. I pray that paperwork does not hinder anything positive. Sending big hugs to one Spark from another.

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LINDAKAY228 9/20/2010 6:50PM

    You are doing absolutely the right thing if you have doubts to get another opinion. I have not been in your shoes, so I'm not going to say I know how you feel, but I do know that it must be difficult beyond understanding to face the things your facing. You will remain in my thoughts and prayers (both of you). I hope the second opinion will be better than the first. Sending a great big hug to you.

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SLIMMERKIWI 9/20/2010 6:43PM

    I would be inclined to send the current one you have doubts over also, and explain your thoughts on this one. Sometimes tumors can grow VERY quickly and two weeks CAN make a difference.

I'm not wanting to put the frighteners on you but feel that this is important.

Hope the outcome is good!

Kris xx

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LOULOUBELLE2 9/20/2010 6:43PM

    We find miracles any where we can...I hope that this is one for your DH. Prayer is powerful and you have a community sending up good thoughts for you. We may not be in Syracuse, but God answers prayers from all over. Keep the faith, (even though you claim you don't), take care of yourself, so you can be strong for your DH...sounds as if your doing a awesome job of taking care of him.
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Comment edited on: 9/20/2010 6:48:39 PM

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SCOOTER4263 9/20/2010 6:34PM

    I hope we'll find out tomorrow. I feel like I"m getting effing whiplash.

Comment edited on: 9/20/2010 6:40:09 PM

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JANEDOE12345 9/20/2010 6:31PM

    Does this mean he may still be a transplant candidate?

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Bad news - very bad news.

Friday, September 17, 2010

SO, it seems that after all this poking, prodding, perforating and peering into every square inch of the poor man, my husband is not a candidate for transplant after all. We've been in one hospital or another for two weeks now, and finally they're sending him home. He could live a couple months, a couple weeks, a couple hours. Whatever. We're going home.

I have no idea when or even if I"ll be able to face the loving community here. I hope I can bring myself to be back - if I do, it'll probably be under a different name. I don't know anything right now except that I'm grateful for all you guys have given me. And I don't have any intention of using this as an excuse to either drink myself into oblivion or eat my way into a new size range (unless its smaller.) I do know I have to take care of myself, and I intend to do that. As soon as I figure out how.

Many, many blessings.

  
  Member Comments About This Blog Post:

LUNADRAGON 9/24/2010 4:24PM

    Friend, I am sorry to hear all you are dealing with. My prayers are with you and yours... emoticon emoticon emoticon emoticon emoticon emoticon

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JRSWHIMSY 9/20/2010 6:05PM

    *hugs*

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INBRAZILFORNOW 9/18/2010 11:40AM

    Sending love, prayer, thoughts to you and your husband. We're here for you always. emoticon

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SLIMMERKIWI 9/18/2010 6:09AM

    I am sorry to hear of the seriousness of your husband's condition! Remember, we are all here for you AND for him!

I have done a lot of Terminal Caregiving in patients' own homes and understand the many emotions that you will both be going through. Please ensure that you have supportive people around you and that you have time out occasionally for yourself. This is so you can be a better support to your husband. If you haven't already made contact with them, Hospice can be a very good support system and one I would strongly recommend!

Take care,
Kris



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MOODY9 9/17/2010 11:30PM

    You are in my thoughts and prayers! emoticon

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DASEEMAN 9/17/2010 11:14PM

    Many thoughts and prayers for you and your family.

Deb

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YATMAMA 9/17/2010 11:12PM

    Our love and prayers are with you and yours.

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BUNNYCATS 9/17/2010 10:40PM

    emoticon emoticon emoticon emoticon emoticon

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MOMFAN 9/17/2010 10:26PM

    Hugs and prayers!

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SUZYMOBILE 9/17/2010 10:20PM

    You've been through such an ordeal already, this just doesn't seem FAIR!! You must feel like raging or shaking your fist or crying or just hiding. But you will, somehow, get through this, even though you might not know how right now.

Know that all of us are here to just BE here for you, however we can. emoticon

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L*I*T*A* 9/17/2010 9:48PM

    so sorry to hear of your problems......
keeping you and yours in my thoughts and prayers.............
blessings and hugs........lita

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PURPLELVR7 9/17/2010 9:30PM

    My prayers will be with you and your family, may God guide you and give you the strength to get through this journey.

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LINDAGRAVEL 9/17/2010 9:07PM

    We are here for you

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PUDLECRAZY 9/17/2010 8:58PM

    I am so sorry to hear this! Sending healing thoughts and prayers to your husband and to you. This is hard news, and I understand your wanting to pull in and find the ways you need to cope. Please know that we are all here for you. If you do come back with a different name, I do hope you will let your friends know it is you. We may all be 'virtual' friends, but there is real caring here. I will be worried about you.

Sending love and hugs,
Chris

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AGASSIFAN 9/17/2010 7:42PM

    We will be here, whenever you need us...

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STARLASUE 9/17/2010 7:29PM

    No words, my friend. Sending lots of prayers, love and energy. emoticon emoticon emoticon emoticon emoticon emoticon

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JANEDOE12345 9/17/2010 6:17PM

    so sad for you,
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Comment edited on: 9/17/2010 6:18:20 PM

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DANCINGGARDENER 9/17/2010 5:45PM

    This sucks so hard. You are strong but what a futile situation to have to waste your strength on. I am speechless with frustration for you.

Hang on. Do what you need to do to protect yourself. Shake your fist, cry into a pillow, howl into the night, bay at the moon. Laugh at little things. Forget the pain for a minute or two.

I will watch for your amazingness to shine through any new username you might use. Come back soon.

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SOULCOLLAGESUE 9/17/2010 5:44PM

    I'm with you in so many ways right now. I'm going to SparkMail my e-mail for SoulSister support, just in case you cannot bring yourself back to this community-at-large - which is valid for each of us at times. I'm soooo sorry to learn about the strains you and your husband have been under, and the challenges yet to face.
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JRIMM4 9/17/2010 5:05PM

    I am so very, very sorry that you and your family are going through this. I will keep you all in my thoughts and prayers and I do hope that we will see you again.

JR

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MORTICIAADDAMS 9/17/2010 5:04PM

    I am so sorry!! You are a strong woman and the courage you have used to get you this far will be sufficient to get you through this as well. I am sending prayers.

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SHERYLDS 9/17/2010 4:45PM

    I wish you both all the love and strength you need during this time. Know that I'll be keeping you both in my thoughts and prayers.

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DALMOMOF3 9/17/2010 4:43PM

    oh sweetie I am so sorry, nothing we can say will help ease your pain, I will keep you both in my prayers and hope you will be blessed with as much time together as possible. Hugs

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STARTINGALLOVER 9/17/2010 4:41PM

    My thoughts are of you both in this time.. you are there for him and that is all you can do. You love each other and that will carry you through whatever you are facing. My prayers are with you..and I am sending you thoughts of love as well. We will see you again friend.. we will see you again. We will be here..waiting for you..
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HERE2BME 9/17/2010 4:38PM

  God bless you and sending you a prayer.

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KIMBERLEY60 9/17/2010 4:34PM

    I am so sorry. I'm sure this is unbelievably disappointing to you. Take care of yourself. Love and support each other. Great each new day and live it to its fullest. emoticon emoticon

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IMREADY77 9/17/2010 4:32PM

    I'm so sorry to here that. I'm sending white light and love ya'lls way. emoticon

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No news is, well, no news.

Thursday, September 09, 2010

John is in the solid organ transplant (did you know that kidneys and livers are considered "solid", but hearts aren't? Neither did I.) unit at the hospital. He's been visited by representatives of many departments - social work, psychiatry, financial counselors, nutritionists (special nutritionists for liver transplant folks, not just a regular dietician), and anyone else you can think of - and had every imaginable test, had every body part peered into and prodded. He's had fluids taken out, and fluids put in. And we still don't have any definitive answers.

I guess that's not quite fair. The way it works is that all these folks record all of their impressions and those, along with the various test results, are discussed on Friday when The Transplant Committee meets. They will decide whether or not he should be officially listed for a transplant (he almost certainly will be.) Liver transplant candidates are given something called a MELD score (Model for End-stage Liver Disease) ranging from 6 (less ill) to 40 (gravely ill), obtained from a particular combination of lab results - his is a 29, middlin' tending towards bad. The MELD score is what determines how near the top of the transplant list a particular patient is, and to some degree, what sort of transplants may be considered.

But all that comes later. First he has to be officially listed - until that happens, there can be no discussion of possible outcomes. So he gets tested, and I get an education in the mysterious ways of Medicare and its "doughnut holes", Supplemental insurance plans A through F, Medicare Part D, high protein/high calorie diets (which has unfortunate implications for my own diet progress) and a host of other things I was perfectly happy not knowing about.

I've been holed up in a local Inn and Conference Center. Yesterday I asked them to find me a mini-refrig and a microwave, and today I went out and stocked up on microwaveable food, so now it's got all the comforts of home - more, even, since at home no one comes in and makes my bed. I loaded up on library books before I came out here, so I can entertain myself - and now I've caught up with the Kardashians and their trials and tribulations, too.

I keep wanting to make lists and plans and all that sort of thing - organize both my life and my future as best I can - but I've found that after sitting in the hospital for eight hours a day, plus or minus, I'm pretty much brain dead. (We won't talk about taking a full-size pick-up truck with an 8' bed through the circular parking garage - I'm seriously considering an epitaph that goes something like: she was flawed, yes, but my God that woman could park!)

Thank you so much for all your kind words, suggestions and support. I am continually surprised at what a loving, supportive community this is, and am eternally grateful.

  
  Member Comments About This Blog Post:

SUZYMOBILE 9/11/2010 6:33PM

    I'd be surprised if you could even concentrate on the books, unfortunately. This has got to be a full-time preoccupation. Hang in there like you're doing, and know that our thoughts are with you!

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JRSWHIMSY 9/11/2010 12:20PM

    I'm a bit behind (as always) but you and your husband are never far from my thoughts. I'm glad you're trying to find ways to keep yourself busy. Are you able to get some exercise in? Maybe walk around the hospital grounds? It surprises me that they don't have valet parking, all the hospitals out here do and it's a free service. Make them park the darn truck ;o)

As always I hope you are both as well as you can be and are on the side of the angels. If you ever need to rant, I'm only a SparkMail away. *hugs*

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PENNYAN45 9/10/2010 11:38PM

    Thinking of you and saying prayers that all continues to go forward - to a positive outcome for you and your husband.

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LINDAKAY228 9/10/2010 10:44AM

    Keeping both of you in my thoughts and prayers

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DEBLYNN323 9/9/2010 10:12PM

    Positive thoughts to you.... emoticon emoticon

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UUCEEJAY 9/9/2010 9:54PM

    emoticon emoticon

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HIPPICHICK1 9/9/2010 9:43PM

    My thoughts and prayers are with you.
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DREMARGRL 9/9/2010 8:45PM

    Struggle and fight....Fight the good fight...you sound prepared and armed for battle. I'm so proud of you and I don't even know you! Prayers, blessings, good vibes coming your way....XO MaryAnn emoticon emoticon emoticon

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BUNNYCATS 9/9/2010 8:35PM

    I'm sorry that you, your husband, and your family have to go through all this. Big cyber hugs, and if you need to vent, or chat. I'm here. I know I can't do much, but I have two ears and a heart. Hoping and praying that angels, spirit and animal guides are surrounding you to give you strength, peace and guidance. emoticon emoticon emoticon

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APPLEPIEAPPLE 9/9/2010 8:29PM

    Keep plugging along. I will keep you in my prayers emoticon

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MORTICIAADDAMS 9/9/2010 8:28PM

    Hang in there. You are doing great handling all this. It sounds like things are preceding well.

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SHERYLDS 9/9/2010 7:48PM

    Hey Karen... emoticon emoticon emoticon
Keeping you both in my thoughts and prayers.


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JANEDOE12345 9/9/2010 7:36PM

    If you haven't heard it yet today: Hang in there.

Are you well-loaded with books? Here are a few faves: Middlesex, Fall on Your Knees, The Passage, The Wind in the Willows, Alas Babylon, The Miracle of Mindfulness, anything King Arthurian...I would be deep into half dozen new novels by now, just to keep my mind focused on things I could control by closing the book's covers.

Maybe you should read more cheerful stuff. How 'bout Le Petite Prince, in French yet, just to keep you REALLY busy.

I hope all continues to go well for you. You sound admirably composed and a-o-k and we all hope that proves to be true for you throughout.

Tip the maid,
Pam

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Weekend update

Sunday, September 05, 2010

First of all, thank you, thank you! emoticon for all your kind words and support. I'm amazed at the strength I can draw from knowing you guys are out there - I really had no idea of the power of community.

As it turned out, they didn't send him home the other day. They kept him over night one more night, and he was transferred to the transplant center - by ambulance, and I met them there with my own vehicle - early Friday evening. Since it's the weekend, they're not doing much besides getting him stable and in the best condition they can, and doing some preliminary testing. The main screening, typing, and evaluating will be done Monday or Tuesday when the regular staff is in.

After a brief kerfluffle over room availability - it's college weekend - I'm staying in a nice hotel/motel/inn/conference center about six miles away, getting the hospital visitor rate ($40/day) with all kinds of discounts and a shuttle service. Being the good Scotsman that I am (I crossed out "skinflint"), I brought a loaf of bread, a jar of peanut butter, some Swiss cheese, a container of mayo and a bunch of tomatoes and apples from home, so I don't need to buy food. Hey, why spend when you don't have to?

That's pretty much all I know at the moment. I got 12 - *twelve*! - hours sleep last night - that's more than I've had in the last week combined, so I feel a lot better. Now it's time to go back to the hospital. All I really do is sit in the chair (I also brought a bag of library books) and make sympathetic noises, but I think it does both of us good. And I have a 22 year old daughter at home holding down the fort, so no worries there. We'll see what happens next.

  
  Member Comments About This Blog Post:

DANCINGGARDENER 9/8/2010 4:11PM

    It's your job to suck as much support out of the universe you can get your hands on. Without it, you'd have nothing to give to your husband. I am proud to be part of the direct stream of love & thoughts showering over you right now.

You need this as much as sleep, books, peanut butter and apples. If you feel yourself getting low, let us know so we can fill you up again!
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LUNADRAGON 9/7/2010 8:46PM

    My prayers are with you and yours!
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SUZYMOBILE 9/6/2010 9:17PM

    My thoughts are with you, too. It must be a relief to know he has good care and that home is taken care of. All you have to do is BE there.

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PENNYAN45 9/6/2010 8:53AM

    It is good that he has been taken in by the powers that be - and is now in their hands. I am thinking of you both and sending good wishes your way.

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STARLASUE 9/6/2010 7:41AM

    All those prayers and energy sent seemed to have gotten hubby where he needs to be. Good to hear you were able to get some much needed sleep.

Sending more prayers and energy that a transplant be possible for him sooner rather than later if it is for his highest good.

We are with you in spirit.

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MORTICIAADDAMS 9/5/2010 9:09PM

    I'm glad they decided to get him seen asap because it sounds like he is in the end staged of liver failure. Take care of yourself.

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LINDAKAY228 9/5/2010 7:44PM

    I am so glad they didn't send him home and are continuing with the transplant pre-requisites or whatever they are called. And I'm glad that you got some good rest too. I understand your mentality on the food too, especially since you have no idea how long this will be or what will be down the line. My thoughts and prayers will remain with you. I've subscribed to your blog so I can follow what's happening as you have captured my heartfelt support.

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SHERYLDS 9/5/2010 12:58PM

    My thoughts are with you both. Hang in there. emoticon

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