How Did We Get Here?

"Shit Luck"

Joe asked me to write a post about how we came to be where we are. 

So here is a medical post of what happened during June '12.

On Friday, June 1st, Joe called me early afternoon to say he was home from work in bed with severe abdominal pain.  Joe had awakened at 4 am with this abdominal pain, but went to work for 1/2 day. Joe had experienced this pain a few times during the previous week or so.   I urged Joe to hang up and call his doctor, which Joe did. Dr. C. saw Joe that Friday afternoon. Dr. C. ordered an ultrasound and blood work including an alkaline phosphatase test.

On Monday morning, June 4th, Dr. C. ordered an MRI.  Dr. C. called Joe Monday afternoon and said more tests needed to be run.  Joe and Dr. C. decided it would be best to admit Joe to St. Vincent's Hospital in Bridgeport, CT on Tuesday, June 5th to run these additional tests.

From Tuesday, June 5th through Thursday, June 7th, Joe had 2 different types of CT scans, a Graft Doppler (for examining a portal vein thrombosis), a liver biopsy, an endoscopy and colonoscopy, and more blood work. There was an indication of a blood clot in the portal vein in Joe's  liver. Joe was treated with a Heparin IV for the blood clot.

By Thursday, June 7th, there was no longer any blood clot in the portal vein.  However, we learned Joe had a malignant tumor in the left lobe of his liver.

Intrahepatic cholangiocarcinoma  is the official diagnosis. This means cancer that occurs in the bile duct within the liver.

On Tuesday, June 12th, Joe had a different type of MRI and on June 14th, a PET scan. The PET scan also revealed what is believed to be a tumor in Joe's left femur.

Early on the morning of  Friday, June 15th, the Tumor Board of St. Vincent's Hospital (and the SWIM Cancer Center of St. Vincent's Hospital) met to discuss Joe's case.  The Tumor Board includes physicians and specialists from varying disciplines including oncologists, radiologists, surgeons, pathologists, gastroenterologists, hepatologists, hematologists, and clinical trial specialists.

The Tumor Board recommended that Joe see an oncologist and begin chemotherapy (and possibly other therapies, such as radiation). The Tumor Board also recommended that Joe visit other medical institutions including the Memorial Sloan-Kettering Cancer Center to see what other treatment options might be available.

Cholangiocarcinoma is a rare disease and it is very seldom seen in young people. Joe asked the liver surgeon, (Dr. V) who helped diagnose Joe's illness how this came to be.  The liver surgeon told us they do not have a clear understanding of what causes this disease nor, why it happened to Joe.

In fact, the surgeon simply said, "It's just shit luck."

Wrapping up the month of June we had a few more appointments.  On Monday, June 18th, we visited St. Vincent's oncologist, Dr. D.  We learned about the options for chemotherapy, and we were urged to visit Sloan as well.

On Tuesday, June 26th, we had a bright and early appointment with Sloan's oncologist, and an afternoon appointment with a  Sloan liver surgeon. These physicians agreed with St. Vincent's Tumor Board that chemotherapy was the best approach.  No surgery or liver resection at this time.

By the close of June, we had a plan.  Joe will begin a schedule of chemotherapy on Tuesday, July 10 at Sloan.  Check out, "What's Happening This Week - July 9th" to learn more.

It's been one tough, challenging month.  Family and friends, and the outpouring of love have been nothing less than amazing.

And Joe, has been one courageous, young man.

We would not be standing without all your love.

Thanks.

It means the world to all of us.

Love to all,

Doreen