Kaki and I wrote out a list of questions for our meeting with Dr. Kirkwood about the surgery, post-op recovery, and what to expect. This turned out to have been a futile exercise, because I was told in the meeting that I needed another test to determine if I was going to be able to have surgery at all. This was shocking, to say the least. With pancreatic cancer, the alternative to surgery is…well, there is no alternative. I felt like I had my legs knocked out from under me.
I found out that the the tumor had not shrunk as much as they had hoped, and that they needed to do a laparoscopy (a camera inserted into my abdomen through an incision in my belly ) to look at my liver to see if the cancer had spread there at all. If it had, even the tiniest amount, they would have to cancel the surgery. Though I thought this had long been decided, this laparoscopy was going to truly determine if I actually was a candidate for surgery.
And I was going to have to wait another eight days for it.
It seems that a large part of cancer treatment is waiting. It’s certainly one of the most difficult.
After getting this upsetting news, I spent the next four days studying what pancreatic cancer was all about, the numbers and statistics, and what was required for the surgery. I was confused: was this test just a protocol? If so, why wasn’t I told about it before? Suddenly I felt compelled to seek out more information, and this exposed me to all the horrible statistics that go along with this disease. It was a very confusing, disheartening, and terrifying period. Everything had seemed set an on track, and suddenly I had no idea what was supposed to happen next, what my options were, what the best course of action was.
One thing I learned was that whoever did the surgey had to have a lot of experience. Everything I read said this was crucial – that survival rates were directly tied to the experience level of the doctor.
My investigation led me to other hospitals that do the surgery I needed, a procedure called “The Whipple.” I wound up on the phone with Massachusetts General, which is the hospital I grew up with. They still had all my medical records back to the age of two. The delightful lady in the records room gave me a new record locator number and told me to call the oncology department.
One thing I’ve learned about this disease is that everyone involved with it is incredibly dedicated. It’s a noble thing, because the survival statistics are so grim.
The woman in oncology called me back in 30 minutes from her vacation in Florida and talked to me for about 45 minutes. At the end of the conversation, she told me to have all my records sent to Mass General and she would have everything reviewed by a pancreatic surgeon, free of charge.
I had a similar conversation with a woman at Johns Hopkins later that day. These people are truly committed to helping; I found these institutions via the internet, not through some connections. And their response was amazing.
I also found some places and doctors that were recommended by my friend Naomi Dabby. Naomi is a doctor in San Francisco who I met at Burning Man just once, but she has become my biggest medical advocate.
She spent several days seeking info on Dr. Kirkwood, and what she came back with helped reassure me I was in good hands. Dr. Kirkwood is very experienced and very highly regarded by her peers.
I got this information as I walked into a friend’s house to write a letter to Dr. Kirkwood asking some pertinent questions about her experience, the procedure, and my options. As I finished the letter, my phone rang. It was Dr. Kirkwood.
She had received a message telling her to call this number, it was urgent. I hadn’t called her, but my mother had. Dr. Kirkwood was teaching at the time, but she took time out from her instruction to speak to me for around 45 minutes. She was incredibly gracious, generous, and understanding of my situation. I hung up the phone with my fears much assuaged.
Now all that was left was waiting for the laparoscopic procedure on Tuesday.
