Monday, October 24, 2011

Here's How It Works, Dear Doctors

I wrote an introduction to my meeting with my doctors in Colorado and am including it here. I felt like I needed to be clear about what I expected from them. Here it is:

Statement for oncologists at Univ. of Colo. Hospital Breast Center

First of all, I want to thank you for fitting me into your schedule and seeing me so quickly. I have a lot of faith and trust in my liver care team and felt I would find the same integrity of care here.

I was delivered the diagnosis of Primary Sclerosing Cholangitis on February 1, 2006. I had several hospital admissions for cholangitis and abdominal from then until Feb. 2008, at which time I had a major internal bleed from esophageal varices. I also had a grand mal seizure at the end of that day I was admitted; I had bled out my seizure meds. From that admission till today, I have had only two admissions for cholangitis and one this year from infectious colitis.

I was put on the liver transplant list after the bleed in 2008 and my MELD (Model Endstage Liver Disease) score, last measured, was 8.

In June 2011, Dr. Lisa Forman recommended live donor transplant because of greater chances of getting cancer the longer I had PSC, and because of my age (64) and relative good health and lower surgical risk currently. I have a potential live donor now.

I was diagnosed with breast cancer, receiving the news on Sept. 16. I was angry, frustrated anxious. I was thoroughly pissed off. I received the news on the phone from one of my doctor’s staff members. I was driving my car at 60 mph on a busy, unrestricted-access highway in Hernando County. I finally pulled over when I realized the conversation I was having. This staff member (not a nurse) told me that Dr. Joud wanted me to make an appointment with Dr. Tang (onco) and with a surgeon. I couldn’t cry. I could barely register anything but disbelief.

I am here in Denver because Dr. Tang would not call Dr. Forman until one month following the surgery, even though I’d told him how important to me that he communicate with her. Unless she is communicated with adequately, I will keep looking until I find a doctor, an oncologist and surgeon, who will carry out my wishes. And communicate fully – FULLY – with me and my liver team.

I want the truth and the risks and all scientific and medical information from you and the other oncologists I will be seeing today.

I am hoping for the best care here at the University of Colorado Hospital Breast Center. I’m scared, I’m angry that I have cancer at all. I have a pending situation with my liver right now: a recommendation for “further investigation” after a regular CT scan, then ultrasound, and MRI ordered by Dr. Forman. 

More later, folks.

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