301 Reply by mlepp0416 (edited by mlepp0416 Sun, 20 Nov 2011 09:17:39)

  • Registered: Fri, 08 Jan 2010
  • Posts: 832

Re: My Husband and Cholangiocarcinoma - Part 2

It's with a sad and heavy heart that I post this today.  Home Health care came to the house on Friday and after 5 minutes with Tom, they stated that he needed Hospice and called in the hospice team.

Within the hour, hospice was here.  He is having increasing apnea spells and sleeping more and more.  The last time he ate anything was Thursday when he came home for the hospital, a small bowl of breakfast cereal.  Since then he has only drank water or juice mostly.  On Friday he drank 1/2 of a boost and drank the other 1/2 on Saturday.
 
When I asked the Hospice nurse (after she had assessed him), how much time she thought he had left.  Her response was "If you walked into that room, would you be surprised if he was not breathing?  My answer was No. She then stated "I am not God, but with what I'm seeing now, I would say that he has hours or days, but not weeks."  She has done hospice for about 30 years.

My son and daughter in law drove here from Tomah on Wednesday and spent the night.  My Daugher and son in law and 3 grandchilldren will get here later this afternoon.  All three of Tom's kids have spent a lot of hours with him.  His son is still in denial and does not believe that his father will pass on - no matter how many different ways I tell him that his life here on earth will soon be gone.

My daughter Brianne has been here by my side since she learned that 'her dad' is on Hospice.  She is a stay at home mom and has little Tommy with her.  He certainly delights me and helps "Ama" with my sadness.  Brianne babysits other children at home and will have to go home on Monday after I'm done with work.  That will be hard for her to do if Tom is still here with us.  She wants to be here with her dad when he passes.

Tom's daughter Holly spent Friday looking after him while I worked, but at the end of the day, she said "I don't know if I can stay, it's creepy and morbid and I can't deal with it.  She and her husband had been planning to spend the weekend and get the Christms trees up.  After she left Tom kept asking where Holly and Derek were and was confused as to why they were not here. I explained that she was having a hard time dealing with everything and that we would get the trees up over the week.  Later in the day, the did show up along with two of the older grandkids.  Tom's son and grandson and nephew came later in the day and spent about an hour with him then left.  Tom's daughter Kim also came and was here for quite some time.

My grand daughter Courtney who is a CNA was at the hospital for hours when he was inpatient, and also has been here with her Papa for both Friday evening and all day Saturday until she had to leave for work.

At one point Tom's daughter said to me, I think there are too many people here - I told her that this was my home and I want everyone here for moral support for ME. She thought that everyone was being too noisy and it was distribing Tom so I said OK, I'll close the french doors, then just asked everyone to lower their voices.

I did also call his best friend Dennis and told him what condition Tom was in - he is going to do the eulogy (sp?) at his furneral service.  Whe he and his wife showed up, only Briane, Little Tommy and I were here, everyone else had left to go home.  When he came in and gave me a big hug, he started crying and I told him no crying cause he was going to make me cry! He said he has never cried so much since he got my call.  He's started writing what he wants to say for the eulogy and as writes it he cries so he writes notes to himself on the parts that he knows he will start tearing up (BIG BREATH!)  He asked for some things with humor that he could add so I gave him a few stories that he will add.  I aske him to let his Mom and Dad know cause Tom and I are also very close with them.  Deacon Vincent, Dennis's brother will be doing the funeral service.


I am getting physically exhausted and have a kidney stone that is starting to move so I also have intense pain and really should be getting medical attention for myself, but I refuse to leave his side. I will be here at home working on Monday and Tuesday but I am just moments away and can Instance Message my Supervisor if I need to leave my desk to be with him.  Both of my work Supervisors have been wonderful during the past three years and 8 months. If Tom declines more between today and tomorrow I may just call in and take Mon, Tues and Wed off for FMLA.  Right now each day is an "Let's play it by ear" until we have more information on his condition.

I am so sorry for the long post but it helps me wrting this all down and I know that each of my CC family will understand. Please continue with prayers for Tom, but this time I'm asking for prayers for him to have a swift, safe and pain free journey to his life everlasting phase.

I love each and everyone of you (past and present) who have supported both Tom and I along with our journey with Cholangiocarcinoma.

Love and Hugs and a great big THANK YOU to everyone!

Margaret and Tom

  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,489

Re: My Husband and Cholangiocarcinoma - Part 2

Dear Margaret,

I am so sorry to hear this news. I will continue to pray for Tom. When it is his time, I pray it will be peaceful and full of love. You have done everything you could to help dear Tom. I love how you are so feisty and know how you want things to be. You are one of my Heroes on this site and I don't know what I would do without your advice and support. Take care, Margaret, and just know I will be thinking of you and Tom often. God bless you both and your families.

Love, -Pam

Hoping for a miracle for my daughter, Lauren.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Pamela's Website

  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,224

Re: My Husband and Cholangiocarcinoma - Part 2

My Dearest Margaret, I too have been dreading this day even though I suspected it was to be sooner than later. You have done everything to the inth degree so correctly that I know you bought Tom valuable extra time. You know I am not a Doctor but I think if he is comfortable now, he should be to the end. He is getting ready to go to his Peace and he truly deserves some peace. Speaking of peace and quiet, I dont know of anyone yet in his position who asked for quiet. The night Teddy was passing Robin put the NFL Game on so he could hear his much loved Football. In this case daughter doesn't rule and you did the right thing, again. I am so with you dear Margaret, in my heart and tears.

SENSATIVE:   Margaret, I wrote this about 5 days before Teddy passed:

Time is growing closer, I can see it in his eyes,
Time is growing closer, but we

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: NJ
  • Registered: Tue, 11 Oct 2011
  • Posts: 43

Re: My Husband and Cholangiocarcinoma - Part 2

Dear Margaret,
I am so sorry that you are going thru this but you have been strong so far and Tom knows that you have fought this terrible disease right along with him.
God Bless You and your family but know that Hospice will do whatever needs to be done to make this final step easier for him and all of you.
My Dad is not too well either. He tried a new "cocktail" of 5FU and 2 other chemos. His breathing is also shallow. As a matter of fact, when I went into his room yesterday when he was napping I though he was not breathing. He sleeps a lot and his ankles are extremly swollen. He also looks ashy.
I will go back to stay with him tomorrow and if he is the same I will call his Dr and ask him to have hospice come back as they  were there last week but because he tried the chemo they couldnt do anything yet although they felt he needed oxygen already-I do too. I know he's trying to get thru Christmas but I dont see that happening.
Take care of yourself,
Kathy

  • DianeC
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  • From: Redmond, WA
  • Registered: Wed, 26 Oct 2011
  • Posts: 86

Re: My Husband and Cholangiocarcinoma - Part 2

Dear Margaret - I'm glad you're writing your thoughts and feelings during this difficult time.  It does seem to help clear the mind.   We can relate to what you're going through.  I'm particularly supportive of your role as Tom's wife.   When everyone else has gone home, it's Tom and you.  You know best, Margaret, so try to stay tough. 

I worry about your health and the kidney stone.  Please call your doctor. 

You and Tom are in my thoughts.
With love,
Diane

  • From: Wisconsin
  • Registered: Sun, 07 Sep 2008
  • Posts: 1,990

Re: My Husband and Cholangiocarcinoma - Part 2

Dear Margaret,

Thoughts of you and Tom weigh heavy on my mind.  As I read your post and those that follow  I have tears in my eyes.  You have both been so strong through all of this.   Know that I am thinking of you both and praying for Tom to pass peacefully and as pain free as possible.  We are all here for you both.

With Love, Hugs & Prayers,
Darla

"One Day At A Time"
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,224

Re: My Husband and Cholangiocarcinoma - Part 2

Kathy, yes, please ask for Oxygen. It not only helps with the breathing but it helps with comfort as well. I don't know how often Hospice is coming but they will step it up a bit if you feel that is needed. Teddy started out with every week then it went to twice a week then 3X. Best of luck as always.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • Gavin
  • Gavin
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,832

Re: My Husband and Cholangiocarcinoma - Part 2

Dear Margaret,

I am so sorry to hear this. I know what you mean when you say that writing helps and I did the same with my dad when he was at this point, and yes, we so understand. You have done everything possible that you could for Tom and I know you will continue to do everything you can to keep him comfortable. We are here for you always and I will keep you and Tom in my close thoughts.

Hugs,

Gavin

  • From: New Bern, North Carolina
  • Registered: Tue, 30 Sep 2008
  • Posts: 683

Re: My Husband and Cholangiocarcinoma - Part 2

Dearest Margaret,

I'm so sorry this time has come but you and Tom have battled together so courageously against this monster.  I pray his passing will be painfree and hope he will slip gently into heaven and into the arms of all who have gone before.

You are in our thoughts and prayers.  Please take good care of yourself.

Hugs and tons of prayers.

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.
  • Registered: Fri, 08 Jan 2010
  • Posts: 832

Re: My Husband and Cholangiocarcinoma - Part 2

My beloved husband, the love of my life, Thomas G. Lepp passed away on 11/20/2011 at about 8:48pm. We had such a wonderful bond that most people could see, other's could not. I could finish his sentences and he could finish mine. Or I would think something and he would say it, and I'd look at him with such an amazed look on my face and so "Get out of my head!" and then we would laugh! And I could do the same thing to him, he would be thinking something and his thoughts just popped out of my mouth!

Just about 3 weeks ago Tom said "Remember when we first got back together when I said that I could spend the rest of my life with you? Well Babe, it looks like that is going to come true." (Jimmy, our nephew always commented when Tom called me Babe! He'd say that is the name of a pig you shouldn't call Marge a pig! Meaning the pig From the movie Babe)

Although it's only been a few hours, I already miss him more than I ever thought was possible to miss someone. One of my first responses after he passed was "I've been taking care of him since March of 2008 when we first learned of his cancer. I won't know how to live without taking care of him."

When I realized that he was so close to death, I held him in my arms next to my heart as he made the transition from his life on earth to his life everlasting in Heaven. I will never forget the panic I felt, as part of me wanted to do everything I could to keep him here with me, then such a sense of joy when I realized that his pain and suffering was over, that he did not have to have any more tube exchanges, no more chemo, no more blood tests, no more ER rooms, no more hospital stays, no more medications, no more insulin, no more poking an prodding by doctors. He was finally free of all that! And I made certain that the funeral home knew that they were to make sure that they took his girlfriend (the tube going into his liver was to be taken OUT. He did not want to have that tube and bag for eternity! Good bye to the liver drain tube!

When his daughter Holly brought him home from the Hospital on Thursday, I'd had already received a call from his primary doctor and his were "Margaret, I am so sorry. I did not tell Tom this but I don't like his color and I don't think he has much time left and I think it's time for Pallative or Hospice"

Tom and I would tell each other, every night before we went to sleep that we loved each other. We would hold one another and he always wanted me to sleep close to him and he always went to sleep with one part of his body touching me, be it his hand or a leg or one of his feet.

The very last thing he said to me earlier today was "I love you" as his blue eyes looked directly into mine. That was shortly before he went into a coma like state. He never spoke after that, and was not in any pain.

It was hard knowing that after his 3 year 8 month battle with cancer that we had lost the fight. He tried so hard, he did not want to leave me, that was the hardest thing that he had to deal with. He was always so concerned that I would be alone.

I told him over and over again that it wasn't about me, it was about him and that it was OK to let go that I knew he was tired, and that I knew it wasn't him giving up, it was the cancer taking over. That it was his body could no longer battle the cancer with him. I told him it was OK to let go and go to his heavenly slumber.

When his doctor started him back on Chemo about 5 weeks ago - I was very surprised when he told me that he was going to do the chemo! We had discussed it many times and he said he was done, that he was tired and that he couldn't do it any more. I supported him 100% and we had even discussed that if another tumor were found or if the cancer had spread that he was done. I tried to talk him out of doing the chemo and he was adament that he was going to give it one more try.

But in the end, although we lost the fight with cancer, we never lost sight of each other and the very deep love that we shared.

Tom touched many people during his 64 years on this earth. He was a good father, a great uncle, an awesome grandfather, a loving brother, a great friend and a very loving husband. I only wish that we'd had more time together, to build more memories!

Thomas, I know that I have told you many times during our years together that I love you to the end of the earth and back again, so keep me close to your heart as you make your way to those pearly gates. You know that someday we'll be together again. It may take me a while to get there, and when God is ready for me to be with you again I know that you'll be up in heaven standing just inside those pearly gates waiting for me with open arms.

You loving wife, Margaret

Thomas Lepp Sr. Obituary: View Thomas Lepp's Obituary by Green Bay Press-Gazette
http://www.legacy.com/obituaries/greenba...

  • Registered: Fri, 08 Jan 2010
  • Posts: 832

Re: My Husband and Cholangiocarcinoma - Part 2

This is the first chance I've finally had to post this on this site.  I will continue to grieve for awhile (forever) and I will come back to this site to offer guidance to others.

Just in the event that anyone would like to send a card:

Margaret Lepp
634 E. Frontage Road, Lot 77
Little Suamico, WI 54141

I love you all.  Go with God and you guys KEEP KICKIN' THAT cancer for my Tommy so that someday we get a cure for this cancer!

  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,224

Re: My Husband and Cholangiocarcinoma - Part 2

My Dearest Margaret, there are no words just tears in my heart. I am so happy that you had the Love you and Tom had and we are lucky women. You were an awesome wife and care giver and we do what we have to do to get our loved one through this terrible journey. Yes, you will feel it all so bittersweet. Bitter for what he had to go through and sweet for what you had but will have for eternity, no one, nothing can take those memories from you.

Those we love must someday pass beyond our present sight

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • Registered: Fri, 15 Oct 2010
  • Posts: 1,739

Re: My Husband and Cholangiocarcinoma - Part 2

Hi,Margaret,
I am so sorry to hear of Tom's passing.
May God bless you and your family.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

314 Reply by Pamela (edited by Pamela Tue, 22 Nov 2011 22:45:43)

  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,489

Re: My Husband and Cholangiocarcinoma - Part 2

Dear, sweet Margaret,

My heart broke for you as I read of Tom's passing. I am so sorry for your loss. You and Tom had such a special love. I hope you take time to grieve and take care of yourself. Much love and God bless you.

-Pam

Hoping for a miracle for my daughter, Lauren.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Pamela's Website

  • Gavin
  • Gavin
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,832

Re: My Husband and Cholangiocarcinoma - Part 2

Dear Margaret,

I am so very sorry indeed to hear of Tom's passing, please accept my sincerest condolences. I know at this time there are no words that I can say that would help, but please know that I am thinking of you and your family right now.

Gavin

  • Registered: Fri, 29 Sep 2006
  • Posts: 466

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret,
I am so sorry for your loss. Believe me I know exactly what you are feeling. I've written a letter to be read at my Tom's funeral on Sat. and it expresses pretty much exactly what you are saying. We have been together side by side for 31 years and I feel like I am half a person. He always said that he was amazed by two things in our marriage. First that I would stick with him at the beginning whren he was dealing with family problems, secondly that we could feel  like one person. Both of our hearts are broken right now Margaret but I guess in time we will heal. Everyone seems to survive this,
it's just hard to imagine right now. My heart and prayers are with you. I hope our two Tom's are with Teddy right now having a big party!! Love , Mary

  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,224

Re: My Husband and Cholangiocarcinoma - Part 2

Dear Margaret and Mary, of course Tom & Tom are with Teddy. And Margaret you know he will join Teddy watching the Packers with Vince Lombardi.
I so know how you are feeling and please trust me it does get easier. There will always be a deep hole but life becomes a new normal and we have to be strong
and live life to the fullest we can as our husbands would want it that way. It has helped me to write a poem or something each month on the anniversary of Teddy's passing and next month will be my last, I composed it about a month ago. It helps me to express my feelings. I have a fabulous daughter who calls me daily sometimes twice a day. I have very close wonderful friends and I have this awesome CC site. Still trying to sell my house and go in to an apartment. Great news is we won our case with Hospice but I can't give any more details until it's really settled. But now I feel restiution for Teddy. One by one things get done. I am waiting for the moment the Toms let you know they are with you!!!  I can't wait. IF you believe, that seems to be the biggest boost I have gotten to get through this year. He doesn't come around as much anymore but I know he is here. I am wondering what will happen tomorrow as 3 guests are coming from Milwaukee for their 16th year here for the Holiday, all Grandchildren will be here and Teddy loved a Holiday. Stay strong girls not time to let go until after the Services and even then it may be a bittersweet relief because the loves of our lives are at Peace in an awesome place. All my love!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: Hooper, Utah
  • Registered: Mon, 12 Sep 2011
  • Posts: 199

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret and Mary,
May God fill your hearts with his love and ease your pain. My only wish is that my wife and I can say the same about each other.

-Byron

"Pull down your hat, strap on your spurs, and tighten the cinch. Let's ride this mustang."
  • Registered: Sat, 17 Apr 2010
  • Posts: 655

Re: My Husband and Cholangiocarcinoma - Part 2

Dear Margaret,

There are no words.... sending you and your family my deepest sympathy and love at this heartbreaking time.

Hugs

Andrea x

Devoted Daughter to the most wonderful Dad a girl could ask for.  Sadly lost his battle on 19.02.11, peacefully in the arms of Mom and I.  As requested by Dad "we will keep on smiling".
  • DianeC
  • Senior Member
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  • From: Redmond, WA
  • Registered: Wed, 26 Oct 2011
  • Posts: 86

Re: My Husband and Cholangiocarcinoma - Part 2

Dear Margaret -- the words you've posted are  beautiful.  How blessed you two were to have such an unbreakable bond of love.   Ill will keep you in my thoughts.
Love, Diane

  • From: London
  • Registered: Fri, 28 Aug 2009
  • Posts: 1,058

Re: My Husband and Cholangiocarcinoma - Part 2

I just wish I could find words to express my feelings at this very sad time.

Thinking of you.
Julia x

Missing my lovely sister ...

"When it gets dark enough, you can see the stars" - Lee Salk

Lalupes's Website

  • Registered: Fri, 08 Jan 2010
  • Posts: 832

Re: My Husband and Cholangiocarcinoma - Part 2

When I first joined this forum, I started on another link (which I just found on page 11) and am so happy to see that it is still on here.  I plan to somehow print out all pages from both part 1 and part 2 and perhaps incorporate that into some type of memory book for the family.

One suggestion that I can think of is that the site would/could offer some type of printable button : Print all pages ?  Or offer participants the option to purchase a bound copy of their posts for their loved ones.  Something to consider for future upgrades? 

Each and every one of you who have followed Tom and I on our journey have become very special to me, now that Tom has passed.

I wish you all peace and happiness with the upcoming Holiday season and may God Bless each of you.

Go with God and KEEP KICKIN' THAT cancer for my Tommy.

Love and Hugs,
Margaret

Tom is watching over all of us now. He is at peace.

  • Gavin
  • Gavin
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,832

Re: My Husband and Cholangiocarcinoma - Part 2

Dear Margaret,

And you are very special to all of us too. I don't know if this will help here or not with what you are looking to do, but it should be possible for you to print out each individual post. If you highlight all the text in each individual post then you should be able to print it out. Once you have highlighted the text, then right click with your mouse and a print and print preview option should come up on your computer, then if you click on the print option you should be able to print the post from there. I hope some of that helps.

Hugs,

Gavin

  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,224

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret, it is so good to see you! I know you are busy adjusting to your new normal  but sure like to hear from you, when you can. Take care, you are terriffically wonderful!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: NJ
  • Registered: Tue, 11 Oct 2011
  • Posts: 43

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret,
I am so sorry for the loss of your beloved Tom.
I know the pain you are going thru right now but just take some time for yourself each day and give yourself a "pat on the back" for all the work you did to help him live almost 4 years more than you ever thought.
My Dad is still refusing to have Pallative Care come in because he is trying a new chemo "cocktail". he is getting weaker, loosing a lot of weight-can now feel his bones as Dad was a big man, he is hardly eating or drinking. spends most of his day sleeping and his gait is awful, I am afraid he is going to fall. His color is awful and his stomach is soo big. he coughs all the time and he is finally taking the painkillers but I can see that they are not really working that well.
I know he is trying to hold on for Christmas but I dont see that happening unless there is a miracle to come.
God Bless you and all the others on this wonderful site,
Kathy