My Husband and Cholangiocarcinoma

Just thought it was time to give everyone an update on Tom. He continues with the external drain to keep his bilirubin level under control. Currently it is about 6.3 or so. He’s already had to have the drain that Mayo put in exchanged because the bile started to smell (bile should NOT have a strong putrid odor, if there is any odor it should be a slightly sweet smell). And the Mayo doctor did not add any extra holes to the drain tube (which apparently he needs to have else the drain gets clogged up within a few weeks)

We still have not heard back from Mayo since we sent all his scans, so we are still in a holding pattern. Tom has started Physical Therapy to help build his muscles and get his strength back.

He works out in the yard every day, planting TONS of flowers. He said he wants to have the yard all beautiful and wants to be able to enjoy it before he leaves. He’s got great plans and I believe that he will complete them too, including all the landscaping that he has planned. So far he’s completed the flower garden around the new deck.

We did complete the paperwork for the Veteran’s to see if we can get his disability rating switched from Non-Service connected to Service connected due to his Cholangiocarcinoma and have just heard back from the VA. We have to be in Milwaukee at 11:00 am this coming Saturday for them to review his case and for them to run whatever tests they feel they need. The more research that I do, the more evidence I’m getting that his exposure to PCB’s is the culprit. The Green Army paint that Tom used for almost three years during his army stint in the Motor Pool contained Chromium-6 which is highly toxic to the liver and causes bile duct cancer. In 2003 the Army switched their Green Army Paint to a Chromium-3 based paint which is ‘safer’ than the paint with Chromium-6.

It would be interesting to do a study on how many people with Cholangiocarcinoma were exposed to PCB’s and espically Chromium-6. It had been thought that Cholangiocarcinoma was only caused by the the ‘Asian Fluke’ but there is a lot of evidence out there showing that PCB’s also cause both liver cancer and bile duct cancer.

We are holding it together here at our end and hope that each of you, whether you are a Cholangiocarcinoma Survivor or a Caretaker of a Cholangiocarcinoma survivor continue to beat the odds and help spread the word about this type of cancer.

Go with God and KEEP KICKIN’ THAT cancer.

Margaret and Tom

All: Dr. James Edwards, interventional radiologist from Mayo tried to get the internal stent in and it was once again a no go…But the doc wants to get his films from his pre tumor ERCP so that he can ‘map’ the bile ducts and then he feels that ‘maybe’ he can be successful. Doc Edwards was very excited that Tom had at least one ERCP ‘pre new tumor’ so he now can get a ‘road map’ of his bile duct where the tumor is….

However, the Liver Specialist, Dr. Dunn pretty much tried to talk Tom out of trying any more. His words, “Your quality of life is pretty good, so why mess with it”

On the six hour drive home we discussed it at length with Tom’s son and one of our good friends….and the end result is that we are having the requested information sent to Dr. Edwards and if he thinks he may be able to get the stent in we will give it one last shot….more to come as we know more.

Go with God and KEEP KICKIN’ THAT cancer.

Margaret

Thanks a lot Rick, that is encouraging!
Margaret

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