Topic: My husband and Cholangiocarcinoma - The fight has ended

My beloved Husband, Thomas G. Lepp passed away on Sunday, November 20, 2011 after a couragous 3 year 8 month battle with Cholangiocarcinoma.

We were hoping that after his successful resection in March 2008 and after 18 months of him being and looking so healthy that we had beat the cancer.  But, Alas it was not to be.  In Nov of 2009, he started turning yellow.  His oncologist gave him 6 months.  But he fought successfully and lived another two years.  Almost exactly 2 years to the day when he started to turn yellow and I knew something was wrong.  It was Thanksgiving day, 2009. And he passed onto his heavenly journey just 4 days before Thanksgiving 2011.  The 2nd day of the big Wisconsin Deer Hunting Season.  I know he's up there in Heaven with Jesus holding him in his arms.  And he's already healed again and whole and hunting with his nephew who passed away in 2008 during deer hunting season.

He will be sadly missed my all his blended family, 7 Children, 15 grandchildren, many nieces and nephews, sisters, brothers in law, sisters in law and many, many friends.  And all of his CC family from this board.

As like Teddy does for Lainy, he has already given me a sign that he made is safely.  The lights in the 4 season room where he spent most of his time in the last two years, flickered off, on, off, on - but only that light.  I know it was his sign for I asked him to send me one. 

His journey was rough for him, but he fought so hard because he didn't want to leave me.  I hope one day see his picture on the faces of cholangiocarcinoma page.  I submitted it two years ago and maybe it got lost.

I sit here in Tom's recliner, now my favorite place to sit with his little sidekick and namesake slumbering beside me and I feel at peace.  I know the worst is yet to come with the wake today and the funeral tomorrow.  These next two days will certainly take their toll on me.

For the rest of you, continue your fight and I hope you win, be couragous and for my Tommy and all of you I pray that one day, we will find a cure for this horrible cancer that is taking more and more of our loved ones.

Go with God my Tommy, Soar away, fly away on Eagles Wings!

Your loving wife,
Margaret

Re: My husband and Cholangiocarcinoma - The fight has ended

Dearest Margaret, I am thinking of you today and sending prayers. I was so happy to see that Tom let you know he arrived. That was amazing and made me feel good as well. Keep watching, he will be all around you and that will bring you much comfort. The first sign I had was also the blinking of a light, in the kitchen. Later gets much better with signs. Try to remember as I do that our time with our boys was short but we had what most never have in a lifetime! We are lucky. I love you and wish I could be there with you now, but you are going to do fine. Take a rest, but let us know how you are doing.

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.

Re: My husband and Cholangiocarcinoma - The fight has ended

Margaret, your post is beautiful and encompasses everything that Tom meant to you.  You meant the world to him too!  I hope for peace and rest for you.  Thoughts and prayers to you and your family during this sad time.

Re: My husband and Cholangiocarcinoma - The fight has ended

Dear Margaret,

I too will be thinking of you and your family.  That was a beautiful post.  My first signs from Jim were blinking lights and other electric things.  Yes, you will see more signs as long as you are open to them and I know you are. 

Take care Margaret.  Come back and let us know how you are doing when you can.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

5 (edited by mlepp0416 Fri, 25 Nov 2011 23:48:28)

Re: My husband and Cholangiocarcinoma - The fight has ended

I have to also add that after about 10 minutes after his passing, Lil Tommy in his mommy's arms, looked up at the ceiling - got a great big smile on his face and said "Papa, buh bye Papa" and waved bye bye with his little hand all the while looking up at the ceiling. 

They say that children are suspectible to that type of thing.

Then my daugher Brianne sang the song he requested to sing at his funeral "Go rest high on that Mountain" by Vince Gil, while kneeling on the floor close to him.  It was very peaceful and I'm so very happy that I choose to NOT put him in Inpatient Hospice as it was important to be at home with me when he passed.

Hugs,
Margaret

Re: My husband and Cholangiocarcinoma - The fight has ended

Dear Margaret,

I am happy Tom let you know he is ok in heaven. I bet he will be checking on you and letting you know he is ok and loves you a lot. I pray for God to give you strength to get through this weekend. I am sure Tom's service will be beautiful. I just wanted to let you know I am thinking of you and hope you will be ok.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

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.

Re: My husband and Cholangiocarcinoma - The fight has ended

What beautiful posts, Margaret.  I love the fact that little Tommy could sense Papa's presence even after his passing.

I'm sure the service will be wonderful.  I'm thinking of you.

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: My husband and Cholangiocarcinoma - The fight has ended

margaret, I am new to this site, i just started posting yesterday. My husband was just diagnosed in september. I read pages and pages of all your posts the other day at work. I was completely impressed of your dedication and strength. It also scared me a bit to know we have alot more to go through.My husband has hyler cc with a klatskin's tumor. Surgery may not be an option and he isn't sure he wants it. He has done three chemo treatments so far. He is 40 and we have an 11 year old son. I will keep you in my prayers. You have spent so long caring for you husband and your life has been so hectic, try to rest and do some nice things for yourself.

Re: My husband and Cholangiocarcinoma - The fight has ended

Dear Margaret, you blow me away all the time with your wonderful posts but the Bye Bye from Little Tommy did me in but good. Margaret you know what we went through when I took Teddy to Hospice and you were so right about keeping Tom home. That was the only thing I would have done different in the 5 years.  I hope you are doing ok yourself!

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.

10 (edited by mlepp0416 Mon, 28 Nov 2011 01:03:40)

Re: My husband and Cholangiocarcinoma - The fight has ended

I have to let everyone know that the funeral for Tom was wonderful, emotional, sad, full of joy, bittersweet.  There were a lot of family and friends for the Wake on Friday, and the same for Saturday for the service. 

The Deacon that did the service said "When I do a funeral service and see such a large group of people in attendance such as I do today, that tells me that this man was a much loved person who touched many people during his lifetime. 

Our grand daughter Kaylah, 16, (from Iowa) sang "Amazing Grace", our daughter Brianne sang "Go rest high on that Mountain" (Vince Gill) and Tom's fishing buddy Dennis did the Eulogy.

The Deacon and Dennis are brothers and before Dennis even spoke, Deacon Mike had to get a few 'digs' in for his brother with statements such as "Tom must have been a heck of guy to get a guy like my ugly brother to cry while writing the words he wanted to say" and "I have to pick on him so that he gets mad at me so he won't cry today" and at one point said "Dennis, do I have to pinch you?"

The words that Dennis spoke for the Eulogy are as follows:

I met Tom approximately 16 years ago, you know how you meet some people and they have this smile that makes you feel like you could just hug them?  Tom was one of those people.  He invited me to join him at Whitefish Lake in Canada for a week of fishing.  That became a yearly adventure for 14 years.  Tom, I am sorry to have to say this but you were NOT the best fisherman. Marge seemed to always 'out fish' you.  Now we pray that you are fishing up in heaven with the best fisherman of them all: Our Lord, Jesus Christ.


I pray that I may live to fish until my dying day.  And when it comes to my last cast, I then most humbly pray: When in the Lord's great landing net and peacefully sleep.  That in his mercy I be judged big enough to keep.  Tom was always there. If that meant driving all the way to Thunder Bay and back for a part for SOMEONE ELSE'S motor; Tom was there.

Our Lord says to Love thy neighbor as thyself. Tom showed all his neighbors love through his deeds. Look at what he did for his family and friends at White Clay Lake.

I feel Tom was the happiest when he reunited with Marge. She became his strength through these hard time. Thank you Marge.

This is a shotened Version of Lina Ellis's (The Dash) if you have already heart it, please bear  with me.

I read of a man who stood to speak at a funeral of a friend. He referred to the dates on his tombstone.  He noted that first came th date of his birth 1947. Then he spoke of the followng date with tears, 2011.  But he said, what mattered the most of all was the DASH between the years.  For that dash represents all the time that he spent alive on earth.  And now we all know what that dash is worth.  I believe Tom lived that dash to the utmost as a Husband, Father, Grandfather and Friend.

11 (edited by mlepp0416 Mon, 28 Nov 2011 00:57:01)

Re: My husband and Cholangiocarcinoma - The fight has ended

And since the site appears to be messing with me today.....after the service, there was a processional out to the mausoleum for his interment.  The processional was at least 40 cars long.  The Military Honors were beautiful, the 21 gun salute (which was really a 9 gun salute??) Three men, three guns and each fired 3 shots (gov't cuts?)  The Taps can do anyone in and the folding of the flag and presenting to the spouse (me) was beautiful.  As we watched the casket being lifted into the Crypt I said "And the battery on the lift goes dead" and prayed that it would not.  But as the lifted the stone to place over the Crypt, the battery went dead, and they had to get a different lift to put the stone in place.

We had a wonderful meal afterwards and told lots of fun stories about Tom and incidents in his life.  One of the funniest was the Oyster incident.  One of Tom's friends had given him a can of Oysters, which he'd forgotten was in his truck.  We were at White Clay Lake where our cottage is and were building an addition for one of the campers.  We had a fire for burning all the scrap wood.  Tom saw the can of oysters in the truck and grabbed it and threw into the fire.  I told him that I didn't think that was such a good idea.  Needless to say about 10 minutes later, just as Tom was walking past the fire, we heard a boom and there was my poor Tom with stinky bits of oysters all over his hair, face, shirt and pants.  He just stood there with such a funny look on his face!  And did he smell awful. 

All in all it was a wonderful day, yes, it was sad and bittersweet.  My family has surrounded me and although I will have some very sad days, I know that I will find peace and I am proud to be his widow.

Hugs and love to everyone.  And you know my Motto:  Go with God and KEEP KCIKIN' THAT cancer for my Tommy!

LOVE,
Margaret on behalf of my Tommy.

Re: My husband and Cholangiocarcinoma - The fight has ended

Dearest Margaret, the most inmportant thing was everything was just as Tom would have wanted it. You will now slowly, very slowly come in to your new nromal. You are  as strong as your are loving and it will all balance out for you. I wish for you lots of visits and now it is time to take care of yourself and I am very serious about that. Being a caretaker takes its toll trust me on that one, no matter how strong we try to be. It is now time for Margaret and I know.....easier said than done!

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.

Re: My husband and Cholangiocarcinoma - The fight has ended

How beautiful, Margaret.  Thank you for sharing your day & your wonderful memories with us.

Julia x

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: My husband and Cholangiocarcinoma - The fight has ended

Dear Margaret.
So sorry to hear of your husband's passing just recently.  Your posts are so lovely.  I just lost my Mom 2 months yesterday.  We scattered some of her ashes yesterday in SC, one of her favorite places.  We will be scattering some more in WI at a northern lake, Keyes Lake.  Her Dad, my Grandpa, had a cottage on it.  I still go there to enjoy the lake, though my Grandpa had to sell it in his later years.  I am from WI, now residing in KY.  I know how important deer hunting is to the men of WI.  They say heaven is unbelievable and I am a believer it is.  I'm sure he is hunting up there right now with other family members.  There is a book, Heaven Is For Real, that is great.  It is a near death experience of a 4 year old.  It helped me a lot with my Mom's passing.  Heaven is real & every bit of wonderful as they say.  Sounds like your husband gave a real good fight.  Awesome how long he battled it.  My Mom found out about CC in July & passed in September.  All too quick for us.  We had a family outing the night of her passing & burned a lot of her cancer stuff.  My cousin took a photo of that night on his Iphone.  He got a beautiful blue light up above us, Mom.  I know it was.  I knew she's around us, but we had actual proof.  Anyone reading this can go to my Facebook page (Pamela Gaska) and see that photo in my album, 1st photo click on. God bless you and your family during this difficult time.  He is around you all the time & in a great place.  Take care.  Praying every day for a cure.
Pam

Re: My husband and Cholangiocarcinoma - The fight has ended

Margaret is one of the strongest women I have ever known.  I have been in touch with her as soon as I met her on this site in 2010.  She and I have created a bond that will last forever, even though our Marc and Tom are no longer with us!!! 

I am always thinking and praying for your Margaret.  Look forward to the day that you and I can meet in person!  You are amazing! 

Stay Strong!

Jeff Grieder
ASAP Cruise Vacations
Owner, Cruise Expert

Re: My husband and Cholangiocarcinoma - The fight has ended

Margaret,

That was beautiful.  Thanks for sharing it with all of us here.   You are a strong person and with all the love & support you have you will be OK.  It's not easy, but you know we are all here for you, too.  Take care of yourself now Margaret.

Thinking of you.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: My husband and Cholangiocarcinoma - The fight has ended

Margaret,  you have done an amazing job to honor Tom and his life.  I loved that you had a nice dinner and were treated to old stories.  My dad was also buried with full military honors.  From what I learned, it isn't a 21 gun salute at all.  That's what I had thought, too.  My husband is in the Air Force and once served in the honor guard himself.  There can be any number of service members firing rifles.  They are called volleys and each one always fires three volleys.  It signifies the battle field is cleared of wounded and war can begin again.  It is a beautiful ceremony with Taps and the folding of the United States flag.  Both my husband and brother in law wore their uniforms as my dad was buried at the VA cemetery.  I hope you get some rest soon.

Re: My husband and Cholangiocarcinoma - The fight has ended

Margaret....what a beautiful posting this is.  You have made me cry and laugh. 
Know that Tommy will always be in our hearts.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My husband and Cholangiocarcinoma - The fight has ended

Dear Margaret,

I'm glad Tom had a service fit for a Hero. Because he is a Hero to all of us. He fought so long and hard. You must be so proud of him. Thank you for sharing the details of his funeral. Now I hope you get some rest and find peace in his memory.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

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.

Re: My husband and Cholangiocarcinoma - The fight has ended

Margaret,

It has been a long journey, Tom was a brave traveler and was lucky to have you by his side, strong and faithful. For the fisherman, here is a poem by one of my favorite poets that speaks of "the other shore":

Boat
I must launch out my boat.
The languid hours pass by on the
shore---Alas for me!
The spring has done its flowering and taken leave.
And now with the burden of faded futile flowers I wait and linger.
The waves have become clamorous, and upon the bank in the shady lane
the yellow leaves flutter and fall.
What emptiness do you gaze upon!
Do you not feel a thrill passing through the air
with the notes of the far-away song
floating from the other shore?
~Rabindranath Tagore

I am sorry he is gone but I am sure that Tom is on that other shore, and that he is at peace.

Patty

Re: My husband and Cholangiocarcinoma - The fight has ended

Margaret,

I am so sorry for your loss.  I lost my mom 3 days before you lost Tom.  The pain is unbearable at times.  I understand.  Hugs.

*~Becky~*
Loving daughter of Kathy, diagnosed with CC July 18, 2011.  She passed quietly in her sleep on November 17, 2011.

Re: My husband and Cholangiocarcinoma - The fight has ended

Thank you everyone for your wonderful posts.  They all mean so much to me. 

Jessiesgirl: Hang in there, it will get easier in time.  Yes, there are times when the pain seems to be unbearable, but your mom would want you to live your life to the fullest, to do the very best that you can do with your life, achieve your dreams!  Hold your memories of your mom close to your heart and keep her alive in your memories.  She will ONLY be forgotten when no one mentions her name any more!

I've finally received the Life Insurance check from my employer and paid off the funeral today, now have to figure out all the medical bills and work with my employer to see if they will WAIVE the 'new' $2,400 deductible that they put on my individual policy AFTER meeting the $2,400 family deductible and the family $3,000 out of pocket!  My complaint is that since I already met everything, just because my husband passed away and was removed from the policy, I should not be penalized because he passed away, and I feel that my employer is discriminating against ME!  We'll see what happens.

Living my NEW NORMAL!
Hugs and love to everyone.
Margaret