mlepp0416
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All: Three days and counting until we head to Mayo….
On a sad note, Tom’s sister Barbara, age 69 passed away on Thursday at about 11:30pm. This morning was spent making all the funeral arrangements since I was her executor. Wasn’t enough in her funeral fund which I started around 4 1/2 years ago, but it at least gave us a jump start on the expenses.
I had a grave plot which cost me $95 to transfer to her and another $1,010 for the charges to put her into that plot, plus another $900 for the funeral home to cover those expenses above the funeral package….What a way to spend money, however, I’m gaining some useful experience and will have more knowledge if the time comes for Tom. The last time I did this was many years ago when my mother passed.
Did you know that it costs more to give a person a decent funeral and burial than it does to have a child??? With all the laws that there are now surrounding death and burial….it’s a racket I tell you!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret and Tom
Hi Tj:
I will join Lainy (and Teddy, the miracle man) in welcoming you to this site. Humm, 10% eh? Well that could mean that out of 100 CC Patients your mom will be in the 10% that beat this cancer! Or it could mean that out of 100 years your Mom will still be here in 10 years! I guess it’s better than saying that there is no chance at all! I would not look too much at the 10% because most doctors SIMPLY DO NOT KNOW! And I’ll even bet that your Mom does not have an expiration date stamped on her butt!
I agree with Lainy in that the hope, faith and attitude are what is important to one surving this cancer. You mom should be living life to the fullest, taking advantage of those days when she feels well enough to go and do things! Spend time with her and make those memories!
Prayers are coming your Mom’s way from Wisconsin!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My husband and Cholangiocarcinoma)
anp:
Welcome to the best CC site that I have found on the internet. My husband Tom has Cholangiocarcinoma and his was dectected early through blood work and following an ERCP here in Green Bay Wisconsin, it was found to be cholangiocarcinoma. He underwent a liver resection in June 2008. He developed a bile leak and had an external drain for 7 1/2 months. He did not have any chemo or radiation post surgery. In October 2009 after a PETScan, they told him he was cancer free, however apparently there was a ‘hot spot’ in the liver which his surgeon said was the ‘liver still healing’.
In November of 2009 he started turning yellow and I immediately knew something was wrong. We started searching for answers and his veterans oncologist told him that chemo and radiation would not work and that he should go home and he gave him 6 months.
We sought other opinoins and have now learned that he should have had chemo even after a successful liver resection with clean margins. After reading through all the medical records from the VA hospital in Milwaukee Wisconsin we have learned that he surgeon ‘re-used’ the stent that was in the left lobe of the liver and placed it during surgery in the remaining right biliary tree. (One wonders if this is why he has now presented with a 2.5 inoperable tumor in the right biliary tree??)
We did not like the 6 months diagnosis and went to Marshfield Clinic and although the oncologist agreed with the inoperable part, she did not agree with the no chemo and no radiation.
We then went to the Vince Lombardi Cancer Center here in Green Bay and Tom has had 28 radiation treatments and has started Chemo (Xeloda). His biggest problem is that they were unable to stent the liver bile duct internally, and he has had an external drain since December to drain off the bile that was starting to inflitrate his system, turning him such a horrible shade of yellow.
Without the bulk of the bile getting into his system, he is not pulling much nutrition from the food he eats, therefore he is loosing weight. He is now down to 117 lbs. After the docs here in Green Bay trying 5 times to get the internal stent in I feel that they have given up. We asked for a consult with Madison and the doctor there agreed with the doc in Green Bay that “There is nothing more to try”…..
Unsatisfied with that answer, I asked his oncologist to consult with the Mayo Clinic in Rochester Mn. We have an appointment there on Wednesday, April 14th. and we believe that they are going to review everything and try to place the internal stent. The tumor is dead through the radiation treatments, and the chemo is finding any remaining cancer cells lurking around in his body and KICKIN those in the behind.
My recommendations (and I am by no means a medical professional) is that even after a successful liver resection, one SHOULD have at least a few rounds of chemo as a precaution…..to catch any remaining cancer cells. All of Tom’s new doctors all say that IF he’d had the chemo after his resection he may not be in the position he is in today.
I do not know what the outcome will be for Tom. If they are unable to place an internal stent or somehow remove the dead tumor, I feel that we will be making funeral plans in the near future. Because without the bile to help him digest his food, he will continue to lose weight and he will continue to get weaker and weaker. Very sad, but true.
By the time the tumor started causing the blockage, it was already too late to place an internal stent because of the placement of the tumor. My husband also has diabetes. I would certainly questions the doctor’s about some rounds of chemo for your dad. Your post does not indicate if your dad has had chemo….but if not, I would insist upon it.
You can read more about my husbands journey with CC under my login name.
Go with God, prayers are coming your dad’s way from Wisconsin.
KEEP KICKIN’ THAT cancer.
Margaret (My husband and cholangiocarcinoma)
Rick:
Tom is on a 2 week on one week off chemo cycle with Xeloda (pills) and he gets extremely tired. We too thought he’d ‘bounce’ back on his off weeks but it’s a no go. He had a few hours out of each day when he’s not so tired, but by 5pm or so, he’s pretty much ready for bed cause he is so wiped out. I think it’s a normal reaction and my thought is that if your body needs the sleep, then sleep!
Tom said that he feels like a lousy husband because he sleeps a lot, but even though he is sleeping, he is still here with me and I’ll take him sleeping or awake.
Even though you are not able to run around the yard with the kids right now, you can do more quiet things with them, like sitting with them to read a book (not certain what ages your children are) or playing a game with them, or watching a favorite TV show or movie with them. Trust me, they will remember those moments just as well as running around the yard with them! In fact, moments like those may mean more to them in the long run.
You could also schedule “Dates” with your children. One on One, just you and one of the children at a time. Each child gets an hour or so with dad to do something special. It may be just a drive to go get an ice cream cone and sit and talk. Or go to a park and swing on the swings and have a small picnic.
Hope this gives you some ideas and I hope you cherish each moment that you have with the kids.
Prayers from Wisconsin are coming your way.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My husband and Cholangiocarcinoma)
Dawna:
Great news about your mom…and WE ARE FIGHTING! KICKIN’ THAT cancer is our motto.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Lainy: I like that “Discussing death is really discussing the new life”. Those are powerful words….
Margaret
Kathyb:
I do not think this is ‘morbid’ at all. My husband Tom and I sat down and wrote out a ‘mock up’ of his obituary. We will also be adding that he died from Cholangiocarcinoma (Aka, bile duct cancer). By writing up his pre obituary, he felt that he had some input as to what was put into it and it also spares me from having to try and remember everything on my own after he passes. We even have his pall bearers picked out, and he has already asked those 6 men if they are willing to be his pall bearers. And he asked one of his close friends if he would do an euelogy (spelling?) for him at his funeral.
I like to think of this as advance planning, rather than to have it all dumped on me after his passing.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Raye:
Thanks for sharing. My husband and I are headed to Mayo in a bit more than two weeks now. We’re hoping for them to be able to place an internal stent in Tom’s liver. The doc’s here in Green Bay Wisconsin have been unsuccessful to date.
I don’t think he is in any why shape or form a candidate for a liver transplant so all we are hoping for is for them to place a internal stent.
You give inspiration to others.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My Husband and Cholangiocarcinoma)
Merilee:
Welcome to the site that no one really wants to join, but I’m glad you found your way here. Have you considered one of the Mayo Clinics? I’m kicking myself for not getting my husband there sooner. Doc’s here in Green Bay are also unable to place a internal stent for my husband Tom and we’ve finally got an appointment at Mayo for him.
The external drain bag is good for draining the excess bile off but one of the things that they don’t tell you is that without the bile getting into the intestional tract is that your body does not get enough bile into the system and they you don’t get all the nutrients you need from the food you eat and therefore you begin to loose weight. My Tom is now down to 121 lbs and looks like a walking skeleton. Very sad to see. His doc’s in GB have attempted the stent 5 times with no luck. From what I hear, Mayo has some very unique procedures for placing a stent including a type of laser treatment. We are going for broke on this one.
Best of luck to your Dad, Prayers from Wisconsin are coming his way!
Go with God and KEEP KICKIN’ THAT cancer
Margaret (My Husband and Cholangiocarcinoma)
Hans:
I’m so glad that Kris got to have clean panties! After all, that IS important for a woman! Your post about the panties gave me a good laugh. I can remember when Tom was in the hospital, he couldn’t wait to get out of the hospital big boy pants (What they called PJ bottoms) and get into his own sweats and jeans.
I know that you and Kris will not give up and will keep searching for answers or procedures that will work, just like Tom and I are doing!
Go with God, and KEEP KICKIN’ THAT cancer.
Margaret
Jeff: HA, I also love Roller Coaster’s! And I consider the CC Journey just like a roller coaster ride….not that I love CC (far from it) but the journey has so many ups and downs and twists and turns that you never know what is going to come next…..just like a roller coaster, therein ‘the roller coaster of CC’….
Keeping Marc in my prayers!
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
Melissa:
Thoughts and prayers are with you and your family. So sorry to hear about your Mom. She is at peace now and no longer suffers from this terrible cancer. You will always have your memories that you will hold near to your heart.
Go with God.
Margaret
Hi Alisa:
Welcome to our family! You will find lots of love and support from this website. I too did not want to join, but because of my husband Tom and his journey with CC, I’m very glad I did. Folks on this site are wonderful and also give us caretakers the extra support when we need it most.
I will pray for your Mom and hope you get the answers you seek soon.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My Husband and Cholangiocarcinoma)
THE GOOD NEWS CAN JUST KEEP ON COMING!!!
And the good news is that Mayo Clinic in Minnesota wants to see Tom!
At my request, his oncologist referred him and all of his records were sent there yesterday.
Mayo called his oncologist today and they want to see him, they think they can help!!!
We have to ‘hand carry’ the CD from his last scan of the liver.
He has to be there at 7:30am on the 14th of April. Keep those fingers and toes crossed that they are able to get that liver stented!!!
Mayo or bust!!!
KEEP KICKIN’ THAT cancer!!!
Margaret
