The MDS Beacon™

It started as a stomach ache. What followed was 2.5 years of multiple doctor visits, scans, blood work, confusion, misdiagnosis, and a search for answers that seemed to lead only to more questions.

First doctors thought it was a virus, then liver, spleen, or appendix problems, then a low platelet count, known as idiopathic thrombocytopenic purpura (ITP). Finally, in March 2009, Mitch Kaplan was diagnosed with myelodysplastic syndromes (MDS).

Living in Bergen County, New Jersey, Kaplan played Mr. Mom for much of his life to two children. Now a 61-year-old, the freelance writer maintains an active lifestyle as much as possible, doing everything from improving his golf game to planning ski trips this winter season to working with the Society of American Travel Writers and the North American Snow Sports Association.

Kaplan’s initial reaction to the diagnosis was a revolving vortex of despair, dark humor, hope, fear, confusion, and anxiety, resulting in the fundamental question: What is MDS? “From what I’ve read and people I’ve talked to, it seems to be universal—what is that? Nobody’s ever heard of this thing,” explained Kaplan.

“You read about [MDS], and so much of the information is relatively dated. Like, median lifespan of 2.5 years—wait a minute, I only had a stomach ache, now you’re telling me I only have 2.5 years to live? That generates a lot of anxiety, fear, and more research,” Kaplan explained to The MDS Beacon.

Kaplan started finding some answers with the MDS Foundation, but even that was confusing because he didn’t know how his case fit into the spectrum. Panic mode easily set in.

Fortunately, Kaplan’s doctor was optimistic and reassuring. His case was discovered early compared to other MDS cases, and his promising blood counts put him in the lowest risk group.

Although the former diagnosis of ITP resulted in a rough time, physically, for Kaplan as he was weaned off of earlier drug treatments to start Vidaza, his doctors were confident that he would respond well. Today, he continues to receive the Vidaza treatment in its 28-day cycle, 7 days of daily shots followed by 21 days without treatment.

With his membership in national organizations, Kaplan has friends and colleagues in places all over the world. Combining that with his talent as a writer, blogging was one of the best ways to keep everyone informed and to avoid any distortion of detail through the rumor mill.

Looking back on blogging, Kaplan recognizes that it has been a good tool for venting and keeping track of doctors’ visits and test results. He also reveals a different effect of blogging: “The bad [news] is that you discover that with people tuning in on a regular basis, if you don’t post for a couple of days, they start to get worried. Even if I don’t have anything to say, I have to think of something!”

The blog was intended for family and friends, but he has already helped other people seeking advice from a patient perspective. In his blog, he muses on various aspects of daily life which are not likely to be addressed in more medical information. “I had done a couple of postings about being paranoid about getting on airplanes—one of the things you’re told is to stay away from sick people, and two out of the last three times I’ve been on airplanes I’ve gotten sick since my diagnosis,” said Kaplan.

A simple Google search of “MDS” and “air travel” connected one woman to Kaplan’s blog musings. The woman was concerned about her father-in-law, who was recently diagnosed with MDS, traveling on an airplane. She heard that people easily get sick because they are stuck with other sick people in the same tight space for a long time. Kaplan was able to offer his advice based on personal experience: “Get your father-in-law and go!” He added that they should just take Purell.

It has now been seven months since Kaplan’s diagnosis, and he is still adjusting to the change in lifestyle. Once a week, he drives the 20 minutes to his doctor’s office to have his blood counts done, and periodically, he faces his self-diagnosed “Damocles’ syndrome,” or simply the state of uncertainty: “No matter how much I distract myself, [the MDS is] always lurking in the background, it’s always there. Sometimes it jumps out from the background like an ogre, and you just go ‘Oh God.’”

Coupling this uncertainty is a struggle to accept. When making any future plans, he must consider the one out of every four weeks during which he receives his Vidaza shots and can’t be as active as he normally is. An avid skier and mountain biker, as well as now indulging his new golf habit, he fears that he won’t be able to do some of the things he loves in the future.

Regardless of anxieties, Kaplan tries to stay optimistic about treatments. His doctors have told him that there are two to three drugs being developed that seem very promising, possibly effective for a longer time than Vidaza.

From day to day, Kaplan approaches life as if nothing is wrong, but perhaps with a bit more urgency. “We want to travel, airplanes notwithstanding, so we’re just going to do it. If I want to play golf, I’m just going to do it. Going out to dinner costs $75, so what.”

“You have to stay positive. More than one person has told me, your mental outlook is going to dictate a whole lot of what happens, and if you’re negative, negative things are going to happen. I’m not going to lie, sometimes it’s tough.” Kaplan added, “But the plan right now? Just keep on trucking.”

For more information on Mitch Kaplan’s experience since his diagnosis, visit his blog “Mitch’s Myelodysplastic Syndrome.”

Update: The Beacon is saddened to report that Mitch’s MDS transformed to acute myeloid leukemia in early January and that he passed away in mid March 2010. We offer our sincere condolences to the Kaplan family and the many other people who cared about him.