Cancer Caregiver? Participate in this Survey...

Hi folks -- I'm passing on this information for Alexis, who is studying the ways that caregivers might interact with their support groups. I'll let her tell you all about it...

"My name is Alexis Johnson and I am a doctoral student in the Department of Communication Studies at the University of Nebraska-Lincoln. My research centers on health communication processes, and I am conducting research that I hope will improve our understanding of supportive communication between social networks and family caregivers of patients with cancer. As someone who has provided care to a patient with cancer, I am interested in conducting research that is aimed at better understanding the memorable, supportive messages that are shared with family caregivers in cancer.

"To participate: Participants in the states of Nebraska and Alabama must be at least 19 years old or older to participate, participants in the state of Mississippi must be at least 21 years old to participate, and participants in all other states must be at least 18 years old to participate. If you meet these requirements, and are a current family caregiver of a patient with cancer, and have 20-30 minutes to complete an online survey, you are eligible to participate in this important research."

You can learn more about this survey by going to the site and clicking on the link on that page. You can also find Alexis' credentials and contact information at that site.

How My Husband Died

Hugh and I met in 1997, but we didn't marry until September 2010.

I haven't written since I returned home from Dad's house in Virginia in April, because life was pretty hectic around home. It was good to be back with my husband, Hugh, and daughter, Cora, and we all were pretty busy. I was hired by a travel publication to write an itinerary about our town, my husband and I were working the local farmers' market, he was fixing up the house a bit, and he was anxious to get back on that school bus as a driver. I was so tickled about how much he loved driving that bus after holding down jobs that had him traveling the world.

While I was at Dad's house, Hugh finally scheduled a colonoscopy for himself. He couldn't get an appointment until the end of June, and the doctor called to cancel that appointment and to reschedule for July 6th. Hugh and I never discussed the colonoscopy, other than the fact that I planned to have one later in the year. I was happy he scheduled, as he was older than me and he delayed that procedure as long as he could.

The day of the colonoscopy, Hugh said, "I'm afraid they're going to find something." When I looked at him, he told me that he had been bleeding for the past few weeks. My heart sunk, but I had enough experience with mom to know that I didn't need to get morose about this news. Instead, I told him that we could handle anything they found.

What they found was a tumor about the size of New York. When I saw the images that July 6th morning, I felt as though I had been hit upside the head with a 2x4. Fortunately, I was sitting, as all the emotions I had when I first learned about Mom's cancer returned, only twice as large.

How to Never Forget the Losses

One of two terrapins traveling on its annual pilgrimage through my parents' yard.

I'm fond of Facebook...and I think most of my friends are aware of my "addiction." I manage Facebook pages for a few clients, so it's second nature for me to toss up a photo or a pithy saying on a daily basis on my own wall or pages while at that site. While this habit has become...a habit, I've realized lately that my additions to Facebook have become somewhat of a diary.

In my searches for what has happened in my life over the past two years, I've suffered pangs of hurt, sadness, and even utter and bitter loss over and over again. That pain has worsened with the new Facebook "look what happened on this day last year...or two years ago...or even a decade ago..." feature. Although I'm sure this daily reminder of the past is meant well, it can shake my socks off sometimes.

This morning, for instance, I was whacked in the face with the image of the terrapin shown here. Yes, it's just a turtle. But, it's one of two turtles that make an annual pilgrimage through my parents' yard. These two turtles...or their relatives...have been traipsing through my folks' yard since they moved here in 2000. The turtles just don't pass through. They stick around for a few days, playing hide-and-seek with each other and with us in the gardens before they move on.

While at some other point in my life I might have thought warmly about this photo and its family tradition, I happened to glance at the photos that braced that turtle image in my Facebook "mobile uploads" album. Those photos portrayed our first visit to the teaching hospital where mom was first diagnosed with cholangiocarcinoma. We had just returned from that city to discover the turtles in the yard, exactly two years ago today.

I'm glad I have this chronicle of events that happened over the past two years, because those clues are vital for writing the memoir. But, I'm not very keen on how I keep getting pinched by the past in the most unexpected ways. Sometimes, I feel as though I'm picking at a scab. What saddens me further is that we haven't seen the terrapins yet this year.

Maybe. Maybe. Maybe I'll get lucky and see them before I have to return home this upcoming weekend. And, maybe one day I'll truly be grateful for the memories.

Friends Who Keep My Feet on the Ground

Everything in my life has changed since my caregiving stint with Mom and with her death. I still can't think clearly about ordinary things and sometimes I feel like I'm floating through life. But, every once in a while a friend steps in to pull me back to earth. While on terra firma, I tend to make some rather large strides...like Gumby.

Take, for instance, my friend Kim Jacobs, owner of Turquoise Morning Press. One day, out of the blue, I receive an email from Stephen Zimmer. He said that Kim had recommended me to serve on a writers' panel at the second annual Imaginarium Convention. After reading about all the guest speakers at this event, I felt a little intimidated...published authors many times over, owners of publishing houses, etc...how in the world would I fit in?

Then, I began to write my bio for the guest author pages, and I realized how much I had accomplished in my short writing career. That was a good feeling. The results also were a bit ironic...it appears I've focused on financial issues during most of my writing career...and I don't have two pennies to rub together. Ironic and hilarious, actually. 

What's that adage about writing about what you know? I guess I sidestepped that advice. At any rate, I'm on board, and I'll be participating in this event in mid-September.

Then, I learned that my friend Phyllis, an 11-year-cancer free breast cancer "warrior," was participating in the Kentucky Derby Festival Marathon today. She was gathering donations for the wonderful Gilda's Place in Louisville. For $20, a person could purchase a ribbon that Phyllis would wear during the event. I jumped all over that one, but when I went to donate, I learned that my credit card information was stolen about five days earlier. The only way to donate was through credit card.

But, Phyllis worked it out, and the result is shown in the photo above. Phyllis attached the ribbons to a ribbon and she wore that contraption as a tutu. In the rain. What a cold and messy day! But, Phyllis finished the marathon, and she thinks her time was 3:49:00. Mom's ribbon is Kelly Green, the color that represents bile duct cancer.

What a gift. What a memory. What a wonderful thing for my Mother, who loved horses and Derby week. That love came, of course, from the time she spent out West with us and, mostly, with my brother and his partner, Linda, at Menoken Farms.

Thank you, Kim. Thank you, Phyllis. Thank you both and everyone else for your parts in keeping my feet on the ground and moving.