Carol and I have a great working relationship. She is the leader, I am the follower. So far (since 1959), we have had a lot of adventures, and every single trip we've taken has been dreamed up by Carol, who loves the open road and every dirt road she sees. (We're hard on cars.) However, her recent diagnosis of small-cell lung cancer was a huge pot hole in the highway of life. No, make that a crater. As brave and daring as we two travelers have always thought we were, it took us more than a few days to absorb the shock of that one.
At first we thought our charmed life was over. But then a friend of a friend put us onto ICAN. We soon swapped candid emails with its super friendly President and CEO, Marcia K. Horn, and we realized that our phenomenal luck was still holding.
An international organization was not only going to take on Carol's illness but relentlessly scour the entire world for answers to her particular malady. Unbelievable!
We sang out, “Sign us up, Marcia! Let us do this thing!” She sang back, “You're on!”
That was it. Now we're so stoked — and so encouraged by Carol's early response to chemotherapy — that I'm launching my own website to share my experiences as a caregiver with other Stage IV cancer patients and their families. As you might expect, I will also be detailing the many benefits of linking up with the International Cancer Advocacy Network.
(You know what? Its handy ICAN abbreviation suggests that I simply call this website “Carol and Mike's Place.” I'll talk to the webmaster about it, and get back to you.)
Before I go any further, let's define “patient advocacy” and “spouse and family advocacy.”
Providing the first service mentioned — a whopper — ICAN constantly advocates for Stage IV cancer patients around the world — primarily by keeping track of all the latest research findings and successes with new medicines and surgical procedures, while also sharing all pertinent information with the international medical community.
My smaller but still important role as a spouse in a family advocacy is more personal. I help with my wife's care, and I encourage everyone in the family to stay close and stay optimistic. Just as important, I am constantly in touch with ICAN about Carol's progress, and I am schooled by ICAN as to what questions to ask her doctors. I have also been taught how to maintain a patient file, which is allowing Carol and me to work much more effectively with our oncological team. In a word, ICAN empowers both Carol and me to make informed decisions that can measurably contribute to her care as a cancer patient.
Regarding our “family advocacy program,” Carol and I just manage to qualify as “a family.” Sociologists say that a family, like any other group, is “two or more people.” Carol and I tied the knot in 1965, and we've had lots of time to help populate the world, but we've had no kids, unless you count all the dogs we adopted, loved, and humanized. (Not so very long ago, three of those crazy mutts were all sleeping together on our bed!)
Some quick history: ICAN came into being when it became blatantly obvious that no one doctor should ever be expected to know everything there is to know about cancer. Today the organization is an international clearinghouse for ideas on how to combat all forms of cancer. Nothing less will do, you see. Cancer is a very nasty foe, and the stakes are high.
Marcia recently emailed me: “What if Carol were single, did not have your support, and did not know the right questions to ask?” ICAN truly enables cancer patients and caregivers alike to say, “I can!” Please take a moment soon to visit www.askican.org, cruise the site, and get some idea of just how all-encompassing ICAN support can be!
I know from experience that there are days when anyone could use some cheering up, and I find ICAN's positive approach to tackling cancer to be a breath of fresh air. What is my biggest lesson, so far, from caring for someone I love who has cancer? A no-brainer. If that someone has it, I have it, too, because it impacts our whole life and relationship!
Cancer undeniably brings disorientation and pain — physical, psychic, and emotional — but the good news in all this is love. Use it generously to hold your world together. Talk optimistically about the future. Laugh earnestly at the things that amuse you. And stay close to ICAN. They want cancer eradicated every bit as much as you and I do.
I wish to dedicate this website to Cathy Bua, a gallant lady who recently lost her husband, Tony, to cancer. Together, they fought a long, hard, valiant battle, and Cathy has captured the spirit of caregiving in just a few well-chosen words.
“My main task in caring for Tony was to help him through the bad weather — his cancer — and to teach him how to dance in the rain. That effort brought us both a lot of joy!”
My task now as caregiver is to measure up to Cathy's standards. The lesson I've learned from her great example is that life — no matter how problematic — should be fully lived.
Soon I will be writing to you about many things pertinent to cancer patients and those who love them, and I trust that these topics will both intrigue and inform you. I've already asked ICAN for information on such wide-ranging subjects as diet (including recipes), pain management (including not only meds but acupuncture and meditation), and groundbreaking developments in the worldwide effort to destroy cancer. I'll also include input from my daily journal as caregiver, and my take on the role of religion in helping us all handle adversity. The knowledge you'll gain from my experiences can be of significant help to you if you're assuming the role, yourself, and I think you'll find “Carol and Mike's Place” a most interesting read!
—Michael E. Hearons