Gatekeepers and coping.
Time passes quickly when you don’t want it to. It seemed like we had just gotten back from her latest surgical procedure when we were headed back down in early June for more appointments.
This time, besides her appointment with Dr. Carson, we were to meet with Dr. Dusenbery, or Katie, as we had come to know her, about another round of radiation.
Katie had conferred with Dr. Carson about the possibility of resecting more of the upper vagina, the site of the problem surgery was supposed to address, but Dr. Carson believed that would be problematic. That was another way of saying she didn’t think it would be a good idea, and radiation would be a better approach.
Katie told Joanie she was going to schedule her for a three day session of high dose radiation for later in the month, and asked Joanie if that was okay with her. Joanie, as always, told Katie she would do whatever she recommended, and told her to go ahead and schedule it. All she wanted to do was get back to a place that showed “no evidence of recurrent disease,” and if this was going to help, she wanted to get it done as soon as possible. Besides, she had work to do. John was running for re-election, and she would have little time to worry about her medical situation. She would leave that to me.
An important aspect of this process that I learned early on was to find out who the doctor’s “gatekeeper” was. They all have one, and it was really helpful to me as a caregiver to know who that person was. Anyone who has had experience in dealing with a doctor at an urban hospital knows how difficult it is to get through the telephone tree to get to the person you want to talk to. Your chance of getting through to the doctor on your first call is slim, so the next best thing is to know the person who can get through, and that is the person you want to know, and have a direct line to.
In Bismarck, it was nurse Nancy at Dr. Bury’s office. In Minneapolis, it was Marcia in Dr. Carson’s office. I had Marcia’s direct line, and if I had a question, or needed to talk with Dr. Carson about some issue, all I had to do was call Marcia and I knew that I would be hearing from Carson, or that Carson would get any message I had for her. Both Marcia and Nancy had come to know Joanie as well, and liked her, and they also understood that calls from me were not made if I didn’t think what I was calling about wasn’t important.
The only exception was Katie Dusenbery. As near as I could tell, she didn’t have a gatekeeper. Anytime I needed to talk to her, I just called therapeutic radiology, and left a message for her. She would always call me back. I also had an email address for her, and there were times when I used that as well to communicate with her.
As a caregiver, you will find it is really important for you to keep the lines of communication open between you and your patient’s doctors. If nothing else, it helps you to keep things in perspective and answer any questions your patient might have. It can also help clear up any confusion, and believe me, over time, there will be plenty of confusion. Your job is to clear it up. At least that’s the way I approached it, and it worked for me.
On June 22nd, we were back in Minneapolis, and Joanie was back in for the radiation implants. She was in for three days, and outside of being agitated about just being there, she handled the whole thing with a fairly good attitude. She was so confident that her doctors were on top of this thing, that there was no doubt in her mind that whatever they were doing was going to give her the peace of mind she wanted, and would also take care of the disease that had haunted her for eight years now.
While she was laying there getting the radiation, I began to reflect on the fact it had been eight years now since she started on this journey. I remember thinking how well she had handled all of the disappointments. The emotional ups and downs of fighting a disease like cancer can’t help but take a toll, but as I looked at her, I continued to be amazed at how well she had coped with it all.
I had a good understanding of the dynamics of stress, and how they can affect a person, but in Joanie’s case all I could see was that she was handling it. How she did it I never knew for sure. I knew she prayed a lot. I knew that she ignored it a lot, and I knew that somewhere deep inside there was a strength that was not going to let this thing get the better of her. Everyone’s coping mechanisms are unique, and often go unspoken.We never talked about her battle in those terms. I rather just observed, and waited for her to tell me what she wanted me to know.
How much of what I thought I knew was responsible for her handling it as well as she did, I don’t know. All I knew was that I was seeing something special, and it gave me a measure of hope.