Saturday, May 31, 2014

Don't Give Cancer the Power to Stop the Family Reunion

It started some eighty years ago at the shore. A family got together for summer fun when they rented a cottage. Over time, the parents built a home with a big backyard, where everyone gathered. Children grew up. Some married and had kids of their own, and eventually even grandkids. Some didn't. Some changed jobs and moved around. Some kept the same jobs over the years and put down roots. Summers drew everyone back together for cookouts in the backyard at the fireplace built by cousins, stone by stone.

My earliest memories of my grandparents, aunts, uncles, and cousins are all there. To this day, that scent of raspberry, mingled with confectioner's sugar on powdered jelly donuts evokes the heartfelt warmth of happy family gatherings, thanks to the uncle who used to bring a brown box from the bakery every time he joined us on a summer weekend. There were group walks to the point, ice cream cones with sprinkles, lots of laughter, and relatives galore. This was the one place we all saw each other, our common ground in a rapidly changing world.

In later years, as the original cousins got on with their lives and people moved again and again, we no longer saw each other regularly. That all changed when Uncle James turned 75. His family planned a big birthday bash and invited everyone to come. What a wonderful day that was. There might have been a little sprinkle or two of rain, but I remember pine trees and people, and above all else, laughter.

The following year, my mother suggested we all gather again, this time at my parents' home, for a reunion. This became the annual family gathering. For more than thirty years, the relatives have come to swap stories and share food.

When my mother had a heart attack several years ago, it was a shock. Despite all the previous visits to the pulmonologist for treatment of the increasing breathing difficulties, no actual diagnosis was made. That nagging shadow on her scan that signaled there was something ugly growing on the horizon, but what was it? That something was lung cancer, thanks to that genetic glitch that seems to run in the family.

My mother was devastated that over the course of several years, her cancer grew unchecked. As is the case with many cancer patients in similar straits, she was angry that it wasn't discovered until it was inoperable. Chemotherapy, radiation, and supplemental oxygen extended her life. And with that time, she was determined to continue the tradition of the family reunion.

By then, I was my mother's full-time caregiver, while my father continued to work. I took her to and from her medical appointments, coordinated her medications and therapies, and most of all, took on the task of helping her to live as full a life as was possible under the circumstances.

One of her most adamant wishes was that the family reunion continue. It was no small task. In a normal year, it takes me approximately forty hours over a month or so to get everything ready for the relatives -- the equivalent of a full work week. As a caregiver, I had to squeeze those hours into my already challenging schedule, one that included constant trips to the hospital and medical emergencies. My mother insisted on knowing every detail of the reunion plan, determined to be involved with every decision that needed to be made, from the RSVP tally to the number of hamburgers and hot dogs we would need to feed the crowd to the coffee we would serve with dessert. She insisted on hanging onto the shopping cart and perusing the aisles of stores to gather items for the party, even as her energy flagged and her oxygen tank needed changing.

Some caregivers might have insisted on taking over, pushing the cancer patient aside, in order to get the job done quickly and efficiently. After all, when you are already caring full-time for a loved one, there's little time for anything else. But it's important to understand the devastating impact of cancer on "normal life". Those chores, errands, and tasks most of us hate can sometimes be the perfect therapy for cancer patients who are terrified of what is to come. That great uncertainty that comes with a cancer diagnosis is hard for the mind to overcome; the more a cancer patient is able to stay in the game, the better.

For my mother, it was important to let her still be in charge, even through the fog of cancer treatment. After all, she and my father had invited the family to gather in their yard for more than twenty years at that point. It was their "baby", their way of celebrating the extended family. The big question was how to make that happen even during cancer treatment.

I once had a profound conversation with a cancer friend/survivor/advocate that brought that point home to me. She said her siblings began to count her out of family discussions about the future because they didn't believe she had one. Imagine how that makes a cancer patient undergoing treatment feel. It's like the kiss of death. You're already assuming the fat lady has sung her last aria. (By the way, that very same cancer friend/survivor/advocate is still going strong, still smart, and still more than ready to set the record straight. I'm so glad I know her.)

Another very valuable lesson I learned from my mother was that even the simple act of making decisions about the reunion kept her feeling positive that she still had something to give to the world. She could still bring people together to celebrate what matters in life -- the family. For someone whose health is precarious, the sense of weakness and helplessness can be offset by positive successes. For my mother, the reunion proved to be an achievement of which she was proud, a joint effort with my father.

Just pause for a moment and think about this. She was in active cancer treatment. She was easily fatigued and vulnerable to hideous side effects. Most people would think that the best course of action would be to avoid the stress of the reunion, to pull the drapes and shut the door. After all, it's too much for a cancer patient to handle, isn't it?

To this day, I still remember my mother sitting on the patio, watching the reunion tent go up. She wore one of the many chemo caps I made for her, her oxygen tank at her side, and in those moments, she was delighted by what she saw. Tables and chairs came out of the barn and went under the big top. Tablecloths were spread out and paper plates, cups, and plastic forks, spoons, and knives were set down. My father made his usual run to the ice house for huge blocks of ice for the soda, beer, and meat coolers.

Chemotherapy can be a real beast, but my mother worked with her oncologist to make sure that her treatment allowed her to be as functional as possible. They scheduled her medication so that she would be at her best on the day the extended family arrived. Unfortunately, she was laid low with a sudden bout of intestinal upset that first year with lung cancer. Much of the day was spent in bed. I checked on her frequently as the guests mingled outside. Far from being distraught, my mother was surprisingly calm and content. Even as she felt "crummy" physically, she was happy that she managed to make one more reunion happen. To her, that was her crowning achievement, something she shared with my father. In this day and age of separate lives, they brought us all together for a day, to remember our roots.

On that second reunion after her lung cancer diagnosis, my mother was feeling much better. I still can see her sitting on the patio, with people gathered around her. Still tethered to her oxygen tank, she had a ball catching up with everyone. Despite the fact that she couldn't walk far, the constant stream of people coming and going, pulling up a chair, put her right back in the action. For that moment, cancer took a back seat. Mama was once again in charge of her own life and there was much laughter.

We occasionally forget over time what family means to us. We stop discovering and rediscovering ourselves and each other. We presume to know what other people are thinking and feeling and don't bother to ask. Family reunions are an opportunity to connect and reconnect with relatives we may only see once a year. For that one day, when we take advantage of the moments, we can recall those who are no longer with us, not by forgetting, but by remembering. We can watch children grow into adults. We can put aside opposing politics and philosophies to find what we have in common. On that one day, we're all people united by the generations that came before us.

Even now, my father still looks forward to bringing the family together for that one day a year. He still spends hours tending to the yard and the pool in anticipation of the relatives' arrival. He doesn't do it to be a super star. He does it because he remembers what he got out of those days with his own parents, siblings, and cousins at the shore so long ago. He does it because he remembers those people no longer with us. It's his way of preserving family.

Someone recently suggested we end the tradition. Thirty years is long enough. It's time to move on. Not all of us feel that way. There are still those among us who want to honor that legacy my mother and father gave to us, the chance to get together for one day out of the year and remember we are connected. Time passes. People pass. But one thing we should never lose sight of is the power of family. Don't let cancer steal that from you and your loved ones. Work around the obstacles and come together, with hearts that seek laughter and love. While the storm clouds accumulate on the horizon, gather under the canopy of the family tent and celebrate what is here and now, because the memories you form today are the treasures you keep in your heart tomorrow, come what may.