We’re excited to share with you another guest blog post from another cancer blogger. Ronni Gordon writes “Running for My Life: Fighting Cancer One Step at a Time” where she shares her ups and downs with leukemia. Here, in this guest post, she points out the value of the Internet when you’re on your cancer journey.
Cancer Blogger Ronni Gordon
I started my blog on April 1, 2008, with these words: “I’m like Lance Armstrong.”
“Just kidding,” I continued. “Since its April Fool’s Day, I thought it was a good time to get that out of my system. I do have some things in common with him, though. We both ride a bike and we both fought cancer. Sports helped pull us both through. Running and tennis are closest to my heart, and it was after struggling through a road race at just about this time five years ago that I learned I had leukemia.”
Not too long before starting my blog, “Running for My Life: Fighting Cancer One Step at a Time,” (runnerwrites.blogspot.com), I didn’t even know what a blog was. I came across them more and more when doing research on the Internet for my job as a reporter at a regional daily newspaper in Western Massachusetts. I didn’t think blogging was for me, until I relapsed in 2007 and found myself with time on my hands – and in need of a creative outlet -- as I recuperated from an allogenic transplant that I received at the Dana-Farber Cancer Institute on Oct. 15, 2007.
I thought it would be fun to start out with a joke on April Fool’s Day.
I had fun putting it together and writing it, but, thinking that nobody was reading it, I stopped posting.
Then I got an e-mail from PJ, whose blog, called The Plog, is about her double cord blood transplant. Except for the differences in transplant, she wrote, we seemed to be doppelgangers; we’re both runners who relapsed with AML, we both have three children, we both go to Dana-Farber, we’re both journalists, and we both, thankfully, were in remission again. I wrote back asking her how she found me, and she said it was just through browsing the Internet.
PJ told me about a support system she had developed through reading other leukemia survivors’ blogs and forming friendships that went beyond the Internet. She also told me about the LLS Discussion Boards, especially the section on Bone Marrow Transplant.
I have a huge support system, but I didn’t know anyone who had leukemia. I am very good friends with a breast cancer survivor, and we had our own informal support group for two. But when you start talking about blood counts going up and down or about bone marrow biopsies, nobody can relate like a blood cancer survivor. I mentioned to my friend that there were many support groups for breast cancer survivors but none that I could find for leukemia survivors, and she said, “I know. Who gets leukemia?”
Recently I was pleased to see that LLS is, in fact, sponsoring a blood cancer support group at the Cancer House of Hope in Springfield. I will try to check it out, but right now I am can’t go in public places; my October transplant failed to engraft and I am now home recuperating from my second allo on June 10.
Which brings me back to the Internet, which is especially alluring when you can’t get out as much as you want. Following PJ’s lead, I began to connect with other survivors who really knew what I was going through. I also jumped into the Discussion Boards and found many kindred, and incredibly supportive, people. I feel like I know many of these bloggers and contributors, even though I’ve never met them.
There is, of course, an upside and a downside.
The upside, I think, is stronger. There is so much comfort in knowing you’re not the only one, and in hearing all those success stories. People who’ve been there have provided advice on problems large and small. For example, I wrote that I was afraid to make plans. Someone answered, “You have to live your life. Start by making short-term plans that you can handle.”
I wrote of some of my successes, such as getting back to tennis, and I felt that my friends in the blogosphere were cheering me on. I, in turn, was able to provide advice to people who were scared about some things that I had already been through. That made me feel good.
And I discovered other resources for support, through following links on other blogs.
Finally, writing a blog helps me frame situations in a productive way. When I encounter a bump in the road, I often switch gears into thinking about how I will write about this or that problem. It helps to remove the rawness of the situation, and sometimes to even find the silver lining.
The downside is easy to imagine. You connect with some people who get very sick or who don’t make it. You read about someone else’s problem and think that suddenly you’re going to develop it too. You put a question out there – either on the blog or discussion board – and if nobody answers on the discussion board or posts a comment on the blog, you feel neglected.
You have to put up your boundaries, get your head out of your computer, take a walk, live your life. You have to remember to read about other things, to finish the newspaper and keep up with the books you’re reading. You need to think about something totally different, or else the Internet experience will be more draining than rewarding.
It’s a fine line, and I’m still working on it.
And of course, I blog on.
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Learn more about leukemia, blood and stem cell transplantation, as well as other treatment options.
If you haven’t already, join The Leukemia & Lymphoma Society’s online patient community, the Patient Services Discussion Boards. You can also find in-person, face-to-face support groups near you.
As always, feel free to contact us with questions about any of the blood cancers or our programs at (800) 955-4572.
