By Alanna Kennedy
David Arenson writes—sometimes with humor—about living with cancer
By Alanna Kennedy
When 50-year-old David Arenson of Sedona, Ariz., was diagnosed with stage II chronic lymphocytic leukemia, or CLL, in September 2003, he couldn’t find any patient blogs on the internet that told him what it’s really like to live with CLL. “CLL is not a normal cancer; it’s a long-term thing,” he says. “You watch and wait. There is a lot of confusion.”
Two years after his diagnosis, Arenson began a blog, CLL Diary, to share his day-to-day experience of living with the disease. “At that point, I felt I had enough experience and information to share ... to help people navigate through their own experience,” he says.
Living with a chronic cancer is a “new normal” for Arenson. “You have to learn to deal with odd situations and the way life has changed,” he says. Humor is one tool he credits with helping him to adapt. In this blog excerpt from Oct. 31, 2006, titled, “The President’s Club,” Arenson jokes about being a regular at his oncologist’s office.
During a recent visit to my hem/onc’s office I noticed that my medical file is now about the size of a phone book for a mid-sized city. It is larger than most of the other files that I see stuffed sideways into the open-faced cabinets arrayed in back of the reception desk.
And so it occurred to me that as a patient with a chronic disease who needs treatment regularly and who has a fairly long life expectancy, I am a cash cow in the cancer business. ... Having chronic lymphocytic leukemia makes me a frequent flyer, so to speak, a prize customer.
Where are my rewards? I mean, airlines have private lounges for their best customers. Even Camping World has something called the President’s Club. Why not a President’s Club for CLL patients?
For example, I might enjoy a private infusion room—nay, suite—with a genuine leather recliner, none of that vinyl stuff. And why can’t my IV pole be at least gold-plated? Where, oh where, is my plasma TV? My private nurse? The dessert tray, fer chrissakes?
“Champagne with your Rituxan, sir?”
“Don’t mind if I do.”
... In all seriousness, or at least partial seriousness, there are times when having CLL can be used to one’s advantage. ... When Marilyn and I flew to Florida recently during the height of the gels-on-planes scare, we were able to bring a bottle of Purell hand sanitizer on board with us. This required showing the TSA guards a report stating I have CLL and am immune-compromised, which was backed up by me pointing to my neck and saying, “It looks puffy because I have swollen lymph nodes from my leukemia.”
... And while I still wish I could get a complimentary foot massage while being hand-fed Godiva chocolates, I’ll take what I can get.
To read more of CLL Diary, visit clldiary.blogspot.com.
If you would like to recommend a blog for CR’s Cancerblog column, please send an e-mail to Kennedy@CRmagazine.org.