Lainy
Your poem says it all so well!  It's comforting (but sad) to know others are feeling the same emotions I live with in this new normal.  Oh...how many times I've longed for Gary's warm body next to me at night or a soothing back scratch!  And the closet all to ourselves....a luxury we never wanted.  Although I usually don't write on the board I still follow it daily and commend you for always having the perfect words to share. Take care!

As an added note...Gary was only 60 years old when he qualified.

My husband, Gary, received Social Security Disability through the Compassionate Act.  He applied more than a year after his diagnosis and he had been working parttime up to that point.  Because he was no longer able to work, his application was processed immediately, the date of eligibility was determined to be the first visit he ever made to our ER with jaundice.  He was paid retroactively...I believe minus the 5 month required waiting period.  Eventhough his diagnosis was CC it was never questioned that he was included as part of this act (possibly because liver/pancreatic cancers are listed and he had Whipple surgery?).  I believe part of our success with SS was the extremely compassionate gentleman who handled Gary's case.  He went out of his way to advise us and to obtain the information needed from Gary's employer.  I hope this is helpful.

So beautifully put, Lainy.  Today is the second anniversary of Gary's passing.  That doesn't seem possible, I feel him with me as closely as ever, but things do begin to get more remote.  I had to buy a new car, there are so many more new neighbors who never knew Gary, etc.  But I continue to remember what an inspiration he was and how he wanted me to continue my life without him.  My prayers to all of you who are also sorrowful.

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(31 replies, posted in General Discussion)

Hi!   My husband had difficulty with testicle swelling from being in a hospital bed for long periods.   Much like they elevate your legs to prevent swelling, they would fold up a washcloth and elevate his testicles...one of the rather uncomfortable side effects that goes along with all this.  We did have some laughs over it though!!  Good luck and I hope u get good news soon.

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(25 replies, posted in General Discussion)

Isn't it such a relief and comfort when those things happen?  All of a sudden you realize your loved one is really with you and close by.  I've had a few amazing things happen that are far more than "coincidence".  I always chuckle and think..OK, Gary, I get it and thank you for being with me.

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(54 replies, posted in In Remembrance)

Lainy,

The news we've all expected but have been dreading to hear.  I'm so very sorry, Lainy, but take comfort in knowing you were there 100% for Teddy.  Gary also passed after 3 nights in hospice, and the end was something you never forget...awful but awesome.  Just think of all the other CC victims who greeted Teddy at the gates!  The pain and suffering is over, you will get through this by your strength and memories.  My thoughts and prayer are always with you...you're my CC "sister".  Elaine

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(33 replies, posted in General Discussion)

Lainy,

You'll get through this and have wonderful memories and the comfort of knowing you were there for Teddy every step of the way.  Your last days of this journey so vividly bring back the experience Gary went through 13 months ago.  Once he was admitted to Hospice things went very quickly, but by then everyone in this situation realizes that is inevitable.  Please don't torture yourself with the idea Teddy isn't being cared for in a loving manor.  I'm convinced that at this point of his journey he has one foot on earth and one in heaven.
My sincerest thoughts and prayers are with you both.  You have inspired all of us.  You can do this!  Love, Elaine

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(9 replies, posted in Grief Management)

Kimmie,
My husband died one year ago and I have been tremendously uplifted by some of the books I have read or listened to while in the car.  90 Minutes In Heaven by Don Piper was extraordinary!  I wish I had discovered it before Gary passed away so he could have read it also.  The first few chapters are the real heart of the book - they describe the author's vision of heaven.  It was such a comfort to me!  I also like anything written by Max Lucado and Joyce Meyer.  You don't have to be a religious person to gain hope, perspective and optimism from them.
Getting used to the fact that everyone else goes about their business while your world is shattered is one of the most difficult emotions I faced.  It does get better with time.  A bereavement group or counselor(and possibly some medication) helps as well.   Good luck...wishing you peace of mind.  Elaine

Lainy,
I'm sorry Teddy is showing signs of decline, and I understand the "pit of the stomach" feeling you get with each new thing.  When I look back on Gary's rather sudden prognosis of "weeks to live", I'm amazed to remember how quickly we switched to "let's find the right hospice" mode.  CC always seems to up the ante, doesn't it?  In Gary's case, his pain and sedation meds were gradually increased over a number of days until he was unresponsive and breathing more and more shallowly.  At that point the hospice people were pretty accurately able to determine how long he had left.  The sedation was particularly useful during the last 1-2 days when Gary would go through an aggitated state and insist on being helped to the recliner eventhough he had been seemingly unconscious the minute before.  I'm only telling you these details because I know you've expressed an interest in being informed and want to be prepared.  The progression towards the end continues in the same manner as the course of the disease has for all these years....day by day, then hour by hour. 

Thinking of you everyday, praying for a peaceful passing, Elaine

That was beautiful to read, Lainy, and I can tell you from experience that the memories you're creating now WILL carry you through later.  Being at peace with your situation and the knowledge that you fought as hard as you did TOGETHER will give you the strength and attitude that will allow you to continue on as Teddy WANTS you to.  I'm still praying daily for a gentle end for Teddy and for a calming peace for you.  You're helping to keep my wonderful memories of Gary alive!
Elaine

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(5 replies, posted in General Discussion)

Pam and Lainy,
How funny!!!  You have to be able to cherish every moment.  I remember how thin Gary had gotten...he also had the big eyes.  But mostly I remember how huge his EARS looked...sometimes I thought he would just fly away!!  How can you NOT love ET?!
Keeping you in my thoughts and prayers, Elaine

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(25 replies, posted in General Discussion)

Hi Lainy,

Gosh, this is a tough one to try to address...what's good for one family may not be in the best interests of another.  I would hate to influence you in any particular direction, but I'll relate our experience and you can take it for what it's worth.

While in the hospital being treated for fluid in the lungs (totally unaware at first that it was cancerous),our oncologist informed us Gary had weeks to live.  He had been fighting cc for 2 years and we were still hopeful there was something out there for him.  So...the decision had to be made - did he want to go home from the hospital with Hospice care or go directly into a Hospice unit.  Since we were in a winter rental condo(FL) far removed from our permanent home, the decision was relatively easy to make.  Gary polled the room (me, Gary's brother and his wife, and himself) urging us all to be very honest.  We all agreed a Hospice unit would be best.  I was afraid of what was going to happen and how I would handle it at home alone...and Gary, as his usual wonderful self, wanted whatever was best for me.  The option of driving or flying to SC was off the table by then because of Gary's weakened condition.

So he was transferred to a local Hospice center that very night.  BEST decision we could have made!!  It was wonderful from the very first second we arrived.  They made Gary feel like he was the king of the world..they were totally, 100% there to meet his needs.  I can't even explain the courtesy, respect, tenderness and excellent medical care that was shown to my husband.  The staff went out of their way to speak to each family member as they all started to converge on the unit..reassuring, answering questions, seeing to our comfort, extending emotional support.  They were able to almost precisely predict how and when the end would come and encouraged family members to travel sooner than later.  They ministered to Gary with such dignity that we were all in awe of the process of his body shutting down (I know that sounds odd and gruesome, but that just goes to show you how amazing they were!).  Gary passed away 5 days after entering Hospice.  The entire experience was absolutely awful and awesome at the same time.  We had those days to entirely devote to Gary (and to each other) and had no worries about anything medical...which was a huge relief.  We were with Gary every minute, without distractions, and were left with no regrets of whether we had done the right thing.

Lainy and Teddy, I'm not trying to persuade you to do things the way we chose...certainly you being in your own home with family close by makes a huge difference in what you will decide to do.  Gary was not going to pass away in his own home no matter what.  The only issue I can really address is the medical presence to the end.  That was a wonderful blessing that worked for us.

My thoughts and prayers are truly with you everyday.  You two have been our heroes from the day we first found cc.org.  Take care, laugh and pray together.  Elaine

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(30 replies, posted in General Discussion)

Great idea!!  Done!

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(4 replies, posted in General Discussion)

Heather,

My husband had his Whipple at Duke.  We live 3 hours away (Conway, SC) so did chemo and radiation locally but returned to Duke many, many times for follow up care, infections, further surgery, etc.  His surgeon was Dr. Doug Tyler.  Duke is a wonderful place and very up-to-date in the treatment of bile duct cancer.  If you would like any additional info on Duke, please don't hesitate to ask or to contact me personally.   My thoughts and prayers are with you.  Elaine

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(33 replies, posted in General Discussion)

Lainy and Teddy,

You are both in my thoughts and prayers.  You've been traveling an amazing journey that has brought each of you to the place where you now reside.  That place is incredible because you  have experienced the closeness and Godlike environment that you now share .  Although it's difficult for you to see now, you will be able to take great comfort in knowing that you were at Ted's side 100% of the way, that you built a trust that is on a higher plane than most couples ever experience. It doesn't seem like a fair tradeoff though...but the two of you have given so many people hope, humor, insight, joy and comfort.  And I know in the days to come you'll enjoy many laughs and tender moments with family (yikes!) and friends.  Hang on, you can do it, and everyone will get through this tough time.  Teddy will always be the Miracle Man!!

Fondly, Elaine

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(80 replies, posted in General Discussion)

Ron,
Has your wife applied for SS Disabilty?
My husband received Social Security Disability at age 60 because "impairment is severe enough to prevent gainful employment".  There is an emergency disability process that addresses at least 50 medical conditions (we learned of it here on cc.org) and Gary qualified because of his cholangiocarcinoma.  He had to wait the required 5 months but they also paid retroactively, which in his case was determined to be the very first day he went to the emergency room with jaundice.
Sadly Gary passed away at age 61 but I continue to receive partial benefits eventhough I'm only 61.
Hope this is of some help to you and your wife.  Good luck and stay strong!  Elaine

Hi Jan,
Your story is so familiar to me.  My husband, Gary, had a bile leak for over a year and went through all the infections, odors, leaks and antibiotics that you are experiencing.  His leak never sealed itself ( a first for his surgeon at Duke) and Gary ended up having it repaired surgically after they had tried everything else.  That did the trick for him, but in your case it's likely the leak will heal eventually.  I know it's annoying, stinky, messy and a constanrt source of worry about infection, but it is one of the complications that can happen with CC.  Hang in there...you'll ride it out. 
Thoughts and prayers go out to you, Elaine

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(12 replies, posted in Grief Management)

Darla,
My husband Gary's birthday was also 7/2.  He would have been 62 and this was the first b'day without him.  I am in CA visiting my daughter so went to a winery that day(one of our favorite pastimes).  While tasting some wonderful wines I met a young couple who took a sincere interest in my story of Gary.  They were absolutely heaven sent and I was sure to explain to them how much their company meant to me.  After leaving the winery I cried my eyes out...but it was one of those cleansing cries that leaves you exhausted but comforted.  So many firsts...    Elaine

Lainy,

I wish you had received better news, but your fight is far from over.  One thing you and Ted have always done is to inspire other people to be realistic, fight the good fight and never give up.  You still have plenty of quality time left to be there for each other, and I know you'll use it doing what makes you feel good.  My prayers are with you both.

Elaine

Gavin,
Thank you for sharing that.  For those of us who have suffered the loss, we know that our loved ones are remembered and cherished in their healthy lives and sick ones as well.  It always is comforting to know we're not alone in our sorrows and tributes.   Elaine

Betsy,
My husband, Gary, had a bile leak for 16 months after his Whipple.  His surgeon kept hoping it would heal itself as he had never had a patient before that didn't heal on it's own.  He suffered through all the drain changes and infections too.  They tried everything...no food or drink (he had a feeding tube) for weeks, huge doses of strong antibiotics administered through a PICC line, nothing worked.  Finally the surgeon resorted to surgery to redirect the bile so that it drained internally into his intestine (and did a tummy tuck at the same time to correct the huge hernia he had as a result of the Whipple).  That did the trick...unfortunately by then Gary was so malnurished and had had to wait so long for chemo and radiation that he never bounced back and the cancer spread.  I believe he is one of the 40% of cancer patients that they say actually dies of malnutrition. 
Good luck with whatever your doctor recommends...I know how difficult it is to suffer with that when you've been through so much already.
My prayers are with you, Elaine

I applaud you for being sensitive and practical concerning these very important issues.  My husband, Gary, did much the same preparation for me, and it has been invaluable.  Gary established a "critical events" folder containing all the information you have mentioned.  Especially helpful to me after his passing was the numerical list of immediate things to do, as well as a budget listing what, where, how much and when each payment was due.  Setting up on line automatic bill paying is an easy way to insure there will be no interruption of payments.  There is so much to attend to after the death of a spouse, and every little disruption causes a ripple effect of chaos.

  I was surprised to discover that there can be a temporary timespan when expected income is delayed.  Social security payments are immediately withdrawn from your account (even when the payment for the month has already been deposited). This is refunded later on but can cause insufficient funds, bank fees, and a lack of funds when you least have the strength to deal with such things.  And there are things that will need to be paid immediately -for example, almost $1000 to have the gravesite opened and closed, payment to the church for services.  Funeral homes are mandated to contact SS immediatlely when notified of a death, and SS then informs VA, etc...so things begin to happen quickly.

The packet you are putting together for anyone to use will have a tremendous impact on the stability of the household and the security of its members.  Thank you for being so kind and generous... the traits that seem to bind CC patients together.

My prayers are with you, Elaine

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(11 replies, posted in General Discussion)

kathyb,

I entirely agree with what you are saying.  I also felt it was very important to let people know the exact cancer my husband Gary died from.  It was included in his obituary so people would become more aware of the existence of bile duct cancer.  I praise you for having this type of discussion with your husband.  Gary and I selected and purchased our cemetery plots together, and it gives me great comfort knowing he approves of his final resting place.
Take care, Elaine

Rick,
First of all, your family will never forget you - and there's no such thing as "softening the blow" by doing less than more.  My husband Gary passed away almost 6 months ago, and he gave me the special gift of repeatedly assuring me that he wanted my life to go on and that he would be disappointed if I allowed his death to hold me back from doing things.  I can't tell you how many times in these past months I would have had guilt feelings about laughing or having fun (or taking that last minute cruise with my brother and sister-in-law) if he had not reassured me that those were the things he wanted me to do.
  One extraordinary thing Gary did do, in secret, was to ask a close friend to call our immediate family members(me, his mother, brother, children)  2 months after his death to remind all of us that he felt we had grieved enough and it was time to go on.  Many, many tears were shed the day we got that phone call, but the experience was priceless.
  I must say I treasure Gary's last handwritten words to me, as difficult as it is to even look at them somedays.  At the time we didn't know his death was so close, so I thank God I held onto them. 
I will add you to my prayers that you continue to remain with your family.
Take care and bless you for doing whatever you can to make this easier on your family. It's not fair, but we don't get to make those decisions.
Elaine