The Amusement Park - Not!

Since many/most of you reading this blog are friends and family, you already know this, but I need to write about it. Cancer affects far more than the person diagnosed, and even that person's immediate family and caregivers. I suppose that it's true of other acute and/or chronic illnesses, but I haven't had any of those diseases. I have cancer, and it has turned my life, my family's life, and those of many of my friends, upside down. Inside out. Backwards. With a stomach-churning drop in between. A modern day roller coaster ride.

I've written a lot about the impact of the diagnosis on me since I began this blog, not quite two months ago. I haven't written directly about the impact on my family. My immediate family consists of Patty who is my life partner, lesbian lover, Massachusetts spouse, and our two children, Lucy, age 10 and Nathaniel, age 8. Although I turned 59 this summer, I do have a young family, and it has been especially painful to contemplate not being here with them as they grow into adolescence and adulthood. Patty is my anchor, and the one who makes me laugh.

The first time we saw the oncologist, last June, a week past surgery, we waited a long time for the doctor to come into the room, and I was feeling incredibly anxious. "Make me laugh," I said to her, and she did. It was cancer humor, grim humor, very funny to us at the time, but not so good in translation, so I won't try to recreate it. At the appointment, the doctor stressed the importance of starting treatment as soon as possible (although not until at least a month had passed post surgery). After, I would double check my recollection of something he said against Patty's memory. We had taken a few notes, but I wondered about tone of voice, extra meaning, also.

In July, when we saw the oncologist a second time, he said that I looked good, didn't seem to be jaundiced, and probably wouldn't need treatment. We talked for a while about my diagnosis and his proposal for a clinical trial when treatment is needed, and, toward the end, I turned to Patty and asked if she had any questions. "Yes," she said. "Where is the urgency? We came back early from a planned 5 1/2 week trip out west because you said she had to start treatment right away! We could be in Yosemite National Park right now!" I appreciated her directness! He had the grace to admit that his earlier sense of urgency was unnecessary, and to apologize. "Things have changed," he said, because I was doing so well post-diagnosis.

After that visit, we talked about dealing with the slowing down of the pace of the disease from the initial diagnosis, and our new roles. Patty commented that when her job was to visit me daily in the hospital, and then to support my recovery when I returned home, she knew what to do. Now, just waiting, what was her job, she wanted to know. I confessed my uncertainty about this unfamiliar terrain, but replied also that her job was "to love me." "I am," she said, "but I still feel like I should be doing something."

This past Monday, Patty sat with me in the waiting room for the CT scan, watching me drink the barium, then leave for the scan. After, we went upstairs to see the oncologist. He was nice enough to actually look at a few pictures I'd brought of our trip out west, and to make small talk. I wrote in my last post that his review of the scan indicated no need for treatment now. When we left, I was relieved and happy, and so was Patty, but she was also feeling, she said, like she was riding a tilt-a-whirl at the amusement park. First we prepare for this, then that. Something is different, and we are up, or we are down. The shifts themselves are exhausting, even when the news is good.

As we talked this week, we finally found an image that works for where we are now. "I feel as if I've been sprinting and preparing to keep sprinting. It's really tiring." Patty said. "Things have all happened so fast. Now, almost four months post your diagnosis, I guess I need to think of this as a marathon, not a sprint any longer."

Sports metaphors aside, as I drafted this post and talked with Patty about how to represent her role in all of this, we noted with irony how often images from the amusement park speak to our experiences. The images of roller coaster rides, the tilt a whirl, the"mad teacups," even the merry go round, keep coming to us. Why do we in our culture like these rides? Is it a chance to face our fear and conquer it? Well, the amusement park assortment of rides that makes up cancer definitely brings up our fear, in a real and palpable way. Still, I wish we could get off the Cancer Ride.