mlepp0416

Steve:
No one can really understand the love of one’s spouse unless they have gone through it themselves. I lost my husband Tom, age 64, just about 4 months ago, after a 3 year 8 month battle with Cholangiocarcinoma. After he passed and hospice arrived, I said “Oh my God, what am I going to do now, how am I going to live, I’m not going to know what to do with myself, I’ve taken care of him for the past 4 years and now he is gone”. The hospice person put me down as sucidal. (NOT TRUE) I was far from that, just expressing how I felt at the time.

It is heart wrenching to say the least. Sad, emotional, etc. I spent at least the first three weeks in a ‘fog’. Thank heavens that I had my children and grandchildren around or I don’t think I would have made it.

I still take one day at a time….I’m starting to venture out more now, but always look at the empty seat in the car, and miss him lots. I was his caretaker and never once will I regret what I had to do to make him more comfortable.

Take comfort in the fact that your Nancy is no longer in any pain. She is free now. She is your angel in Heaven.

Hugs to you!
Margaret

The comment about the Tegaderm Film coming loose is interesting to me. My husband Tom had an external drain tube for draining the bile that was building up in his system. We used Tegaderm Film to cover the wound and the site of the tube. His tegaderm never came loose, albit he did not go swimming, but even sitting in a tub full of water never caused it to come loose. He did not have a capped tube, and where the tube came out of the film, there was always just a little bit of area that was not completely sealed. I would think that with a capped tube the area could be completely sealed….

Margaret

Sugar Plum, take each day one at a time, build those memories with your dad. My husband had a successful resection and he then had a good 18 months. He started turning yellow and was given less than 6 months. He lived another two years from that day. Never give up hope and never accept no for an answer. Put your questions to your dad’s doctors and make them think outside the box when they do say ‘no’ or ‘it cannot be done’.

Keep the faith!

Hugs,
Margaret

Hi, I am Margaret Lepp. I am 59 years old. My husband Tom was diagnosed with cc in March ’08, at the age of 61. He had no symptoms, but was having blood work done every 3 months because he was on a cholesteol lowering drung.

In June ’08 he had a successful liver resection with clear margins. He was in the hospital for 21 days. After going home on massive dosages of Antibotics, I became his caretaker, his strength, his advocate, etc. 18 months later he started turning Jaundiced. A new tumor was found and one of his oncologist told he there was nothing they could do, he had less than 6 months (at the most).

We sought 2nd, 3rd and 4th opinons. Each thought that radiation and chemo might help. He did all that but I could see that he was slowing going downhill. We made the best of his good days, and handled the bad days the best we could. He lived almost 2 years to the day when the doctor told him he had less than 6 months.

Thomas G. Lepp passed away on 11/20/2011 – he never gave up trying to KICK that cancer. His body just gave out, but he fought to the end. I knew the Monday before he passed that his kidneys were failing. He spent 2 1/2 days in the hospital. On Tuesday he told me to call all the kids. On Wed he told me he wanted to go home that he would not die in the hospital. He came home on Thursday, started on Hospice. He had a good day on Friday and the aides came in and gave him a bed bath, washed his hair and shaved him. On Saturday he rallied a bit and was talkative, not eating but drinking lots of fluids, not urinating at all. Sunday he slept most of the day, told me that he loved me more today than he did yesterday, and more than the day before that and more than all the days before that.

On Sunday late afternoon I asked him to open his baby blue eyes as I wanted to see them. He opened them and said “I love You”, those were his last words. He was waiting for our daughter and son in law to arrive, they got here from Iowa at about 6:30 pm and he passed away at 8:58pm.

From a caretaker’s standpoint, I would do it all over again if I could have him back with me for another 3 years 8 months.

I hate this cancer because it robbed me of the man that I was supposed to spend the rest of my life with.

I hate it because now I’m living without him and nights are long and lonely.

I hate it because we spend countless dollars and countless hours going through medical procedures and yes, we got three years and 8 months from his diagnosis, but I wanted MORE!

I hate it because although it made me love him more it has now left me without my man to love.

I hate that they cannot find a cure for it and hate that so many people are getting this cancer. I no longer believe the ‘numbers’ for this supposed ‘rare’ cancer. I think those numbers need to be re-calculated because I don’t think this cancer is rare anymore, not with seeing everyone who is on this board fighting CC….what about those who have it and don’t know about this board?

Margaret

And added note: I do not have UC, but microscopic colitis. My mother had UC and it is heriatry (sp?) meaning that if one of your parents had it you will probably get it too.

Mom was actually vomiting blood and her stool was solid blood as well. She was in her 40’s at the time. I was also in my 40’s when my issues started. And I know all about the bathrooms too! One of the first things I scope out when I go into a store….WHERE are the bathrooms – cause with colitis when you gotta go, you gotta go!

Lol
Margaret

Lainy: My doc just took me OFF Asacol! And it IS very expensive, I was paying $900 a month for my script and in the end it was making my colitis worse. Now I use an over the counter med, immoudiam AD or any other generiac anti-diarreal medication. I take 2 tabs at the first sign of loose stools, and if it continues I take another one pill, etc, but no more than 4 in 24 hours. Works great for me so far. Maybe you should try that route!

Hugs,
Margaret

P.S. I fell on the ice on sunday and this time broke my left wrist – remember last year on 1/1/2011 I fell off a folding chair and broke the right wrist? Now 2012 is starting out the same way….I can only guess what is in store for me this year, I just want to fast forward to 2013!

My husband Tom was on ‘Statin’ drugs for years and it did nothing to control his cholesterol levels. After his alk phosphate levels jumped, his doc took him off the ‘statin’ drug and told him to take 2 1,000 mg fish oil pills 2x a day. Within 3 months his cholesterol level was down to 159 (normal).

When I questioned the doctor why if fish oil worked so well to control the cholesterol, why a doctor would prescribe a ‘statin’ drug that is so hard on the liver….he basically had no answer. I think they get a kickback from the drug companies based on how many patients they can get onto a ‘statin’ drug.

During the three year 8 months that Tom battled CC, he took his fish oil pills every day and his cholesteral levels were completely normal during that entire time. Before when on the ‘statin’ drugs they ranged anywhere from 300 – 600!

I now swear by fish oil and take it myself daily and I don’t have high cholesteral. It can’t hurt and I know for a fact that ‘statin’ drugs are very hard on the liver that is why they do the liver function tests every three months for any person on a ‘statin’ drug.

I am not a medical professional, and my analogy is purely based upon what I saw with my husbands cholesteral levels after he started on fish oil

Margaret