mlepp0416
Forum Replies Created
-
Posts
-
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…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
Thank you everyone.
Two days ago, Tom said “It’s time to call the kids” – he didn’t think he was going to make it through the night.
Now we are making arrangements for a hospital bed so that he can come home. He is ready and has made his peace with God.
He’s righted a wrong that happened late last year and now has healed a rift between his niece and nephew. He spoke to both of them last night on the phone. I had reached out to the niece and she called back and wanted to talk to her Uncle Tommy. Both were crying and telling each other that they love one another. Then about 2 hours later the nephew called and Tom asked him to forgive him. The call ended on a positive note with both of them crying – he tries so hard to “Keep the family together”. I was so proud of him last night.
Tom says that now he can rest in peace . We are making plans for Pallative care and then hospice. This is so hard but I’m staying strong for him. He needs me more than ever now. And I’m still hopeful that this will turn around…
Go with God, I love all my CC family.
Margaret
I tried to sign your petition but the link the site sends in an email to ‘activate’ my account does not work.
Margaret
Jeremy: Tom (my husband with CC) and I also tried to get his Cholangiocarcinoma under Service Connected Disability and we were rejected for the same reasons as your dad. Even though I supplied enough evidence that this cancer is also caused by PCB’s and he was exposed to the Green Army Paint which contains a horrible cancer causing agent including Cholangiocarcinoma (liver cancer). He was in direct contact with no protective gear for three years. Spraying it (breathing it in) – heating and scraping it (getting it in through his pores of his skin) – Grinding it (breathing it in) along with tons of documentation that this cancer does not manifest itself until so 40 – 60 years later. They rejected it and I’m not so certain that appealing it would do any good. It is unfortunate that the Veterans changed the rules along the way. When we got married, even for non service connected disability as his wife, we had to be married for 8 years and he had to be totally disabled for more than 10 years and I would have received his benefits as his spouse. They changed it about 5 years ago that for non service connected disability the spouse gets nothing. Talkk about a huge dissapointment. Not that I married him for any type of VA benefit, but really, how can they publish something like that, then simply choose to take it away?
I will sign your petition and wish you tons of success.
Margaret
Thank you Pam. Wow I went from a Senior Member to a Legend! Doesn’t that make me feel ‘old’. Going to call the hospital in a few minutes to see how he did overnight and make my decision if I’m working today or going up to the hospital..
Hugs,
MargaretAll:
Tom was admitted to the hospital today with what they are calling a lung infection. His doctor told him he looked ‘Gray’ and did not like his color. He is on two high power antibotics and breating treatments. He is where he needs to be. We discussed the 5-Fu chemo that he is on and since it appears to be too tough on Tom, she is considering going back to the Gezmar/Cisplation combo as he tolerated that better than most people do. And she also explained that at some point no matter what they do/try, the cancer can get really aggressive and at the point no matter what or how strong his will to live and beat this cancer, when they feel that there is nothing more to be done, we will move to Pallative care and hospice. She is glad that he got an additonal 2 years and for the most part (with some ups and downs) it was a pretty good two years. She is pleased with his progress up to this point and after the upper respioratory issues are resolved, she will meet with Tom and I and come up with a game plan, she wants another MRI/CTScan to see what that new tumor is doing.
Go with God and KEEP KICKIN’ THAT cancer!
Hugs,
MargaretAdam and family: If there is to be a ‘comforting’ thought in Petra’s passing it would have to be that there will be no more suffering for her.
Stay strong for the childrens sake – it is very sad when young children lose one of their parents. Counseling is there for all of the family, if it should be needed.
Come back to thise site, if for no other reason We are your CC family and care about you and your children. Posting Petra’s journey mave just the extra push that someone else may need and asking questions and posting how things affected Petra, can be special for you. This site also gives a person a place to vent, cary, laughter somehow makes evryone feel like family.
My thoughts and prayers are with with you and your family in your time of need.
Go with God,
Margaret
Thanks everyone! Procedure went well, they couldn’t get all the fluid but got some out. He’s feeling a bit better. This is the 2nd time he’s had to have it drained off.
And YES I’m excited about the babies! My 2nd daughter is the one expecting and Tom’s first born grand daughter is expecting the first great grandchild! And my younest daughter and her husband are trying for another and it doees not matter as long as I get a girl!!
Love,
MargaretDeb: My husband Tom had a reoccurance some 18+ months after a successful left lobe resection. In November ’09 his then oncologist told us that chemo and radiation would not help. He told us that Tom had 6 months “if he was lucky”.
Thanks heavens we did not listen to that or accept it. Tom underwent 28 rounds of radiation and a few rounds of chemo. He was off chemo for quite some time as he was stable. About 3 weeks ago after a staging ctscan, they found another tumor that was ‘growing’ so he is back on chemo now. His cocktail is called 5-FU.
Don’t believe that ‘Time Frame’ – Tom is a prime example as to why! He is still here 2 YEARS later. And I told his ‘then’ oncologist what he could do with his ‘6 months’! His comment was “Sometimes we can be wrong”..
Don’t worry about the time frame given you. Instead focus on you and how you feel, spend time with your family, enjoy yourself as much as possible! Write a journal of all your thoughts that you would want to share with your son, so that he has something special from you for his later years.
Go with God and KEEP KICKIN’ THAT cancer.
Hugs,
MargaretSpent about 3-4 hours in the ER last night. Tom has developed Ascites and his belly is very swollen with fluid. They did not do the parenthesis last night because the ER does not have the ‘best’ equipment. Instead, since he was not in duress they are getting him scheduled for the procedure sometime today. I will be happy once it is completed and his belly looks more ‘normal’.
He has so much fluid in his system right now that it’s starting to back up into his lungs and he is gurgling with each breath he takes. I’ll start work at 7:30 am and let my boss know that I have to have some time off to take him in for his procedure.
On the flip side – Papa Tom and I are not only going to be grandparents again (baby due April 2nd) but we just found out we are going to be GREAT grandparents (baby due in June)! I’m just not ready for the G-GMa part! But it will be fun!
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
Crystal: My thoughts and prayers are with you and your family in the loss of your mom. A parents death is never easy to deal with no matter what age you are. I lost my father due to pancreatic cancer at age 22 and my mom due to a massive brain stem stroke at age 45, and it was hard, just as hard for both of them. My husband has been battling CC for the past three years so I know first hand what you went through with your mom.
If there is a blessing in your mom’s passing it is that she is no longer suffering.
Your 1 year old will be fine, most likely will not remember your tears in the years to come. You may want to hold her close and reassure her that you are OK, just sad, and that your tears are “angel rain” for someone you love.
Please continue to come to this site – it will help you to heal as you share your experiences with what your mom went through with others who are going through the same things your mom did. We are all here for one another, giving guidance when we can, moral support, love, etc.
Go with God,
Hugs,
MargaretAdam and Family: I’m so sorry to hear of your loss. Petra is now without pain or suffering, she have moved on to another phase of life. She is at peace surrounded by all the love from you and the children.
Go with God.
Hugs and my thoughs and prayers are will you all in this time of grief.Margaret
Captain: What a wonderful idea. I showed the pic’s to my husband Tom who is also fighting CC and he liked the idea so much that we want to do a pair of ‘chemo’ pants for him. We have a caring bridge page for him and a “Love and Prayers for Thomas Lepp” on FB. But with something like this he (like you) would be taking all the people that love and care for him to his chemo sessions. Those pants would become a keepsake for me if/when he is called to our Lord.
We will be getting a pair of pants and will be starting with family and friends signing his pants. LOVE IT, love it, love it. What a great idea!
Hugs, and thanks for sharing,
Margaret
Elsie: Yes, Tom was diagnosed with CC in March ’08. In June ’08 he had a resection (they took 70% of his liver). In Nov ’09 he presented with Jaundice and his then oncologist told him to go home and get his affairs in order – I suggested chemo/radiation and he said it would not do any good.
We did not listen to that and sought 2nd, 3rd, and 4th opinoins. He has been to Marshfield and to Mayo clinic. But is doing treatment here in Green Bay. He had 28 radiation treatments and oral and IV chemo. We just celebrated the 2 years anniversary from the time the doc gave him 6 months.
He just recently (3 weeks ago) started back on chemo 5-FU and it’s really taking a toll on him. Have I mentioned that I HATE chemo and what it does to my husband? The 2nd day after chemo is usually the toughest on him which happens to be today (Sunday as he has chemo on Friday) So today was a really rough day for him. He’s trying to stay positive, cause we have a brand new grandbaby on the way (April 2nd, 2012) and our 12th Wedding Anniversary (Feb. 11, 2012) and we JUST found out that Tom’s first born grand daughter is expecting sometime in July 2012. We are all hoping that he will still be here to be able to meet his very first great grandchild!
He does have one very special grandson. My daughter Brianne had a premature baby on July 3, 2009 and she named him Thomas (after his Papa) and he is Tom’s lil sidekick! He was only 2 lbs 9 ozs at birth and has come a long way! He is all boy and is such a lovable little guy. He love Ama (me) and papa and loves to sit by papa and eat snacks with him.
We have learned to take the good with the bad. To enjoy the good days and tolerate the bad days. Luckily we have good health insurance and our deductible and out of pocket are just about met, so until the end of June 2013 all Tom’s medical w/be covered at 100%. He can go on Medicare Feb. 1st as he will be 65 in Feb (on our anniversary) then we’ll start him on Medicare Part B (supplement plan) and PCP plan (drug Plan) when my work policy ends in 2013. I will take him off my work insurance which will be cheaper for me and between medicare part a and a supplemental plan for part b 100% of his medical costs will be covered after that! And if that does not work out then I will put him back on my medical the following year. (see, I’m being optimistic that he will still be here! Positive thoughts!
Hugs,
Margaret
