I have always felt like an obscenely healthy person.  I don't often get bugs, certainly not as often as most people I know.  I am healthy, and I always had that as a part of my self image.  

What I have learned in the past 22 months, is that health is much more than just my ability to avoid colds and flu.   Now I am facing a battle for my health, and I am grateful to say that I have a few strong souls beside me to help!

In Feb of 2017 I had my aortic valve and a portion of my aorta replaced with prosthetics.  The surgery taught me that I had no idea about my health, because I truly had no idea how sick I was.  I just thought I was aging and out of shape.  After the surgery I improved immensely, and the experience gave me an appreciation of the amazing Mayo Clinic.  

Because my valve is not working perfectly, I had a full body MRI in March 2018.   They were looking for problems with my vessels because genetic testing, and the pathologist report from my aorta told the doctors I have a connective tissue disorder.  MRI was good, no concern, but when I look back, I can see one line vividly in my head.  "Presumed angioma in liver".  Now I know, that was the beginning of my cancer.  Angiomas are benign collections of blood vessels.  That may be what the radiologist thought he saw, but that is not what it was.

2018 was a bad summer.  My heart was out of rhythm frequently, and I ended up in the ER 4 times for cardioversions (shocking the heart back into rhythm).  Eventually I got the hint and we headed back up to Rochester to see my cardiologist at Mayo.  I LOVE Dr Espinosa.  He is so kind and compassionate, and he actually came in to see me on his day off.  But I felt good, he started me on a medication to keep my heart in rhythm and I expected to see him again in 3 months. 

On the way home from the appointment, Dr Espinosa called me on my cell phone.  Judi, I want you to have a chest CT.  The radiologists are looking at your x-ray. There is a spot I want to look at a little closer.  Dutifully, I had a chest CT.  On August 30, I saw the first inkling that something was actually amiss in my liver.  Rachel, my primary care giver called me. My lungs looked clear on CT.  But Judi, you have never had any issues in your liver right?  Right.  Nothing ever in my liver.  But there was a note by the radiologist.  Incidental finding of a lesion in the liver and "metastatic disease cannot be excluded". So I had an abdominal/pelvic CT.  Now they can see several areas of concern in my liver. 

I saw a local oncologist.  He ordered some blood tests and an MRI.  He told me I had a significantly elevated tumor marker and, the MRI still shows those lesions in the liver.  Weird, because I know I don't have cancer I feel too good for that. He wants to do a liver biopsy.  I wait a week, and having not heard from his office I call them.  HE calls me back and tells me he can't find a radiologist willing to do the biopsy.  It's in a difficult to reach spot.  Can we go to Mayo to have that biopsy done.  You betcha.

Mayo was willing to do it, so after a few more weeks wait (because now we are into the Thanksgiving holiday)  and since I am on Warfarin (blood thinner) to prevent blood clots on my valve, I have to be carefully weaned off that and bridge it with short acting heparin injections. We finally head up there for the liver biopsy.

So now, 13 weeks after I first saw "metastatic disease cannot be excluded" I have had 2 CT scans, an MRI and a liver biopsy. It has taken extra time in part because between each scan, I have had to wait for my kidneys to recover from the contrast they use during the scans.  But now, I have had a biopsy, and now we know that it IS metastatic disease.  It is cholangiocarcinoma.  Bile duct cancer.  And it isn't a happy diagnosis to get.  But I feel good.  The only thing I can say for sure is not normal is fatigue and constipation.  I have a good appetite (when don't I have a good appetite?) and am feeling otherwise great.  

That is all we really know about MY specific case of cholangiocarcinoma so far.  I head back to Mayo on Dec 13 for an MRE, which is a specific kind of MRI that measures the elasticity of the liver. That will tell us what stage the cancer is in, where the tumor(s) are, and allow the doctors to develop a treatment plan.  The only curative possibility is a liver resection.  Surgical removal of the portion of the liver containing the cancer. Resection has strict criteria to meet for them to do it.  All other treatment options are palliative.

I also see a biliary specialist later on Dec 13, and I expect he will tell us the stage the cancer is and what our next step will be.

Cholangiocarcinoma is a very rare cancer, so it is important for me to do whatever I need to do to remain at the Mayo Clinic for treatment. I keep reading about how treatment should be done at a major cancer center.  I am currently doing as much research as I can about cholangiocarcinoma, and I am anxious to find out what we can do and when we can get started.

Here is one thing I know:  being a Christian, I know what is waiting for me. I know I get to go be with my Lord, and that cannot be a bad thing. I know I will be ultimately contented.  Am I ready now?  Heck no!  I want to see my kids have more kids, and those kids have kids.  I want to travel with my honey (best husband in the world, by the way) and continue our long Saturday morning coffee sessions.  So now is the time to fight.  I have prayer warriors on the job, and wonderful family and friends offering help.  

I see how other people are fighting cancer, and I will too.  Never.  Give.  Up.