My wife and I spent Valentine’s weekend in Walla Walla, WA. There, we visited with our niece and nephew who attend Whitman College.
Intermittent spring showers rinsed our car on the drives to and fro along I-84. South of the highway, high desert stretched flat and empty for as far as we could see. On the northside, the broad shoulders of the Palouse crowded the Columbia River Gorge.
Upon leaving the Interstate at Umatilla, the road meanders through rolling hills in Washington. Eclectic roadside attractions dot the route: a chemical weapons depot, wineries, and the Washington State Penitentiary, to name a few. Above the undulating hills, enormous wind turbines guard the horizon. These technological totems gather the abundant power of the Gorge’s prevailing west wind.
Our niece and nephew are in their 3rd and 1st years, respectively, at Whitman. Their parents work overseas. So, my wife and I act as surrogates during these undergraduate years. In the span of 24 hours, we saw a basketball game, a series of one-act plays featuring our niece, and shared dinner and breakfast with the kids. They require little prompting from us. Both are self-motivated and excel at their academics. There is also a balance to their social lives. Whitman is far from the beaten track. The intellectual community can be intense. Yet, they thrive.
Earlier in the week, I participated in my version of class work. My multiple myeloma support group meetings are held at St. Vincent’s Hospital in Portland, OR. I started in January of 2009 when I was recovering from an autologous stem cell transplant. Since returning to work fulltime, I’ve continued with the meetings, taking a half-day off from my job on the second Wednesday of each month.
The Leukemia and Lymphoma Society sponsors the meetings. Normally, they feature a guest speaker. We’ve heard expert opinions on the general state of multiple myeloma research as well as information on specific topics such as osteonecrosis of the jaw, and khyphoplasty surgery. The most recent lecturer talked about integrative medicine. Given the variety and quality of these speakers, I feel as if I’m well on my way to a doctorate in myeloma. Of course, I jest.
My favorite meetings, however, are the general discussions where attendees share their stories. The LLS moderator provides us with a theme to explore and we proceed around the room relating our experience with this disease. In January, we were asked to share what most surprised us about living with cancer and what single piece of advice we could offer others.
Our group’s core consists of about 15 regulars whose numbers increase when caregivers, spouses, and new members appear. At one session, we had nearly 40 people. The LLS provides a good spread of brunch items; my favorite is the quiche. The ambience is more like having lunch together than a formal meeting.
We have survivors of all ages and disease presentation. There are several with five to ten year histories of myeloma. In fact, one gentleman is alive and well 18 years post-diagnosis. Numerous others, like myself, are in the two to four-year category. All of us are experts; we’ve lived the life and are brimming with insights.
Some show the ravages of this disease. One fellow brags, tongue in cheek, of eight khyphoplasties. The bone incursions of the myeloma reduced his height significantly. Another shuffles tentatively with a walker due to chemo induced peripheral neuropathy. There is also a lady who lives with chronic pain but never misses a meeting. She diligently scribbles in a spiral notebook and asks the most probing questions. In spite of these issues, they come to listen, learn, and share. As one caregiver said to me, “There’s a lot of hard earned wisdom in this room.”
My biggest surprise, thus far, is how passive my disease has become. Obviously, the transplant helped me immensely. Eighteen months later I am drug free. The remission is not unusual but neither are relapses within a few months of the SCT.
As to the single piece of advice I could offer, it was simple: join a support group. Learn about your disease from the very best teachers: other patients.