A new doctor, a new city, a new clinic, a new problem.
As a caregiver to someone who is faced with a life threatening disease, there are three things you need to have with you anytime you meet with a doctor. I always had a portfolio with a legal tablet in it, and two pens. I always carried two in case one would run out of ink at the time when I needed it most. I think that was from my experience working as a reporter.
You will find, that the patient, who is overwhelmed just by the word cancer, will hear only about half of what the doctors say, and it falls to you to as her partner to make sure you do. It will go a long way later in clearing up any confusion, and let me tell you there will be confusion. Even though you are involved with her and this disease, and you feel profoundly helpless, you have to be able to focus so that you hear everything that is being said, because you know she won’t.
Another thing you will learn as you get involved, with things medical, is that they are rarely as simple as they seem, and there are no straight lines. For a non-professional like me, that was brought home with Joanie’s case. We had come down to Minneapolis on the heels of one disappointment, that being the fact a cone biopsy couldn’t take care of the problem, and now she faced a radical hysterectomy that again we hoped would take care of the problem. We figured she’d have the surgery on Thursday, she would be in the hospital for two or three days and we’d turn around and go home.
Her doctor in Bismarck, Dr. Bury had sent all of her films of the CT scan and other tests they had done, as well as her medical records and the pathology slides from the biopsies, and, we hoped, this unpleasantness would be over and done with in a few days.
So, here we are, on the ground floor of the Phillips-Wangensteen building, where the clinic was located, on the campus of the University of Minnesota for our first meeting with Dr. Linda Carson at the Women’s Cancer Center.
Joanie checked in, and we sat down in the waiting room so she could fill out the pages of the intake document. That done, we waited to be called to go to an examining room where we would meet her doctor. We didn’t have to wait to long before we were ushered down the hall to a small room for the appointment with Dr. Carson. Before we would meet her, however, the doctor’s nurse, who escorted us to the room, would go through the questions from the intake sheet and make notes, and pretty much cover everything that was on the intake sheet.
After the nurse completes her questioning, and has recorded Joanie’s blood pressure, pulse, height and weight, she smiles, closes the file folder, and tells us the doctor would be in shortly. This was when you begin to learn that the word ‘shortly’ has a different meaning in a clinic than it does in the outside world.
So my job now, as we waited in the examining room, was to amuse Joanie until the doctor made an appearance. I did so by reading anatomy charts on the wall and pointing out important parts, fiddling with instruments that were lying about and, in general, playing the fool, all in an attempt to ease the tension of the hour. I’m not sure if it ever really worked, but I would occasionally get a smile out of her. I knew she sometimes was afraid that I might embarrass her, and I did push that envelope occasionally, but I also knew that humor, even in dark times, can be a powerful tool. I felt this was one of those times. In some ways, it may have helped me more than it helped her.
I was in the process of doing an impression of a tour guide giving Joanie a trip through the various parts of the anatomy, including the ‘naughty bits,’ on a poster on the wall, using the device doctors use to look into your ears and eyes as a microphone and my pen as a pointer, when there came a light rap on the door and in came the doctors.
I cut short my improvised lecture, and we were introduced to Dr. Carson, and Dr. Jonathan Cosin. Dr. Cosin we were informed, was a Fellow at the clinic and was also a gynecologist-oncologist, and we would be getting to know him since he would be involved in Joanie’s treatment as well.
Our first understanding that things would not be as simple as we hoped they would be was at this initial appointment. After they spent some time talking to Joanie, and getting to know each other a little bit, Dr. Carson got down to business.
We were told they were going to perform exploratory surgery, and possibly continue with the radical hysterectomy. I was to learn later it was called an “exploratory extraperitoneal laparotomy,” and that was the clinical term for what I referred to as “opening her up and taking a look.”
We were also told that while she was under they would also be taking a number of lymph nodes to check on any possibility of the cancer having spread.
The mood in the examining room changed with the news and the possibility that, depending on what they found, they might not do the hysterectomy we had hoped would fix this problem. Joanie just sat there quietly as she heard the words Dr. Carson was saying, but I wasn’t sure if they were registering. The announcement about the lymph nodes made both Joanie and I realize that there was something else to be concerned with, and it produced another cloud.
After meeting with the doctors, we stopped by the lab which was next to the Women’s Cancer Center so they could draw some blood for the necessary lab tests, and while we waited for Joanie to be called, I asked her what thought about the meeting with Dr. Carson. She had been quiet since we left the doctor’s office, but now she told me she was comfortable with both Carson and Dr. Cosin, and was feeling a little better about doing the surgery, though she admitted that she hadn’t thought about the lymph node business and was a little nervous about what that would show. She only wanted it to be over.
Even now, as the cloud of uncertainty gave us both pause, we agreed that we were going to assume that the surgery would be the answer, and there would be no lymph node issues. We were to find out on Thursday it might not be that simple.