- Power of attorney
- Complete will
- Drawing classes for Kate
- Dena’s ring
This is a task list of a dying man.
I see it whenever I click the “reminder icon” on my phone. It remains forever unchecked, suspended in the cloud.
Of course, I could erase it.
Right after Chris died, I couldn’t manage to erase anything. E-mails, text messages, his voice on our answering machine. The thought of erasing anything he wrote or said seemed … irresponsible. I felt like I needed to protect it, as if it was somehow preserving him.
Over time I realized the futility of that thinking. Preserving the task list was no more about preserving Chris than saving the last syringe I used to give him morphine. But unlike the syringe, I saved the task list in the cloud for other reasons. I found it instructional.
Chris’s list was a mix of mundane and heartbreaking tasks. Sign Kate up for art class, prepare a document to ensure that she’s cared for after I die. I’ve spent a lot of time thinking about this list. I’m thankful that some of these tasks were completed and equally (or perhaps more so?) grateful that not one drop of his precious time was spent buying a ring for me.
Looking at this list forces me to think about my list too.
I bristle when I hear people talk about the “gifts” of cancer. How a diagnosis changed their lives for the better. I hate cancer so much that you’ll never hear me give it any credit. But refusing to acknowledge that my perspective has expanded since Chris’s diagnosis and death would be like climbing a mountain and refusing to open your eyes when you reach the top.
Before cancer, my task list was far different. Finding time to get a manicure, updating my facebook status, and other mundane first world problems dominated my list. Rest assured, those things are still on my list. But mixed in with the mundane is something bigger. At Chris’s memorial service, I made a promise that I would continue my effort to fight this disease to find help find a cure for kidney cancer. That task remains on my list – right next to getting a manicure.
A few months ago, I trekked up to Baltimore to meet with Dr. Hans Hammers, and my amazing fellow caregiver, Susan Poteat. Hans was frustrated with the lack of research funding for kidney cancer. When he developed a cutting edge clinical trial – he had no one to turn to for grant money. Cancer centers don’t want to give money to rare cancers like renal cell carcinoma and no outside organization exists to provide competitive grants. The four of us put our heads together and decided to change that. That day we officially created Kidney Cancer Cure, a non-profit organization dedicated solely to raising money for research to find a cure for kidney cancer.
As we sat together at dinner that night, a task list started forming in my head. It was a long list. Without really even thinking about it, I turned to Hans and said, “I think I need to quit my job to do this.” He looked surprised and said, “Can you do that?” My reply was simple, “I’m not sure I can’t”
Some of you might be wondering about this move. You might be thinking that it’s holding on to the past – a way to hold on to Chris – like the task list or the syringe. It’s not. No amount of research can change Chris’s course.
The truth is, I still have two very important reasons to continue seeking answers and driving funds toward a cure.
Kate just turned twelve. She looks so much like Chris. She is all arms and legs. When she runs, it’s like a stork – limbs flying as if not connected to a body. She’s the same kind and empathetic girl I wrote about years ago – but much taller and with nail polish. Josie is seven — and in far too many disturbing respects – she’s my clone. But, her smile is all Chris – complete with his crooked teeth. And her sense of humor is delightfully his.
When I look at them, I can’t help but wonder if somewhere in their tangled genetic codes lurks a gene that will allow a tumor to grow unbridled in one of their kidneys. Sadly, there’s no way to know because the research doesn’t exist. We know that Chris’s grandfather died of kidney cancer and we know that his diagnosis at such a young age increases the chance that his disease was genetically related. But, that’s all we know. And for me, that’s not enough.
After nearly 20 years working in tax and health care policy, I’m embarking on something entirely new – KCCure. This is the most emotionally satisfying and least financially rewarding job I’ve ever taken. Our task list is long – but the results will save lives.
My request to you is simple. Will you add a few small items to your task list this week?
- Go to KCCure.org and make a donation
- Like our Facebook page
- Follow us on Twitter
- Participate in our launch of No Tie July
- Tell your friends!
Do it for the 60,000 kidney cancer patients that will be diagnosed this year. Do it for the 14,000 patients that will die this year. Do it for Kate and Josie.