Huis Clos

Sorry for the obscure French reference. Huis Clos is a book by Jean-Paul Sartre that translates to No Exit. This was a book I read in high school. I chose this title because I was thinking that sometimes with CML there is no escape. That is not necessarily a bad thing, but there have been a number of circumstances when CML and/or cancer has come up in unexpected ways. Most of the time I don't think about CML and even forget that I have it, but it has a way of sneaking up on me.

A few weeks ago, I was at a weeklong workshop on the treatment of ADHD. The speaker made numerous references to medication treatment for ADHD and how it is going to target the genetic markers similar to the way cancer treatments, like CML now do. CML was the last thing I was expecting to be thinking about during the workshop.

A couple of times over the last few weeks, I have been referred to as ill or sick. It is funny because I never think of myself as sick or ill. This may be denial, but since I never felt sick, to me CML is a condition that I am working hard to control and not a sickness that is threatening me. This may be a naive view, but I think of CML as a part of my life that I deal with like any other stressor I might encounter. Since it often equated to diabetes treatment as a chronic condition, I don't really see myself as a sick or an ill individual. That is why I kind of struggle when people ask me how I am feeling. I am fine and have never felt sick. It is just a natural question for people to ask when they assume you are sick.

In other CML news, our Light the Night team has raised around $13,000 so far for the Leukemia and Lymphoma Society. I am incredibly impressed and humbled by people's generosity.

Irony

I was just doing an internet search of this blog to see if it would come up in a google search. It did not. Instead, one of my hits was for an article on research I conducted for my dissertation. Here is the link. It shows a picture of me in 2001, 5 years prior to diagnosis working with a leukemia patient. I know I have mentioned the ironies in my diagnosis in the past, but this picture really hit home. I remember working with this boy every time he came in for his treatment. He had a different form of leukemia which required ongoing chemotherapy. He would get so nervous about having the needles inserted, so I would distract him using a virtual reality system during the procedure. It worked so well for him that he would sometimes not realize when the nurses were done. I still use virtual reality, but now I use it to treat people who are afraid to fly, speak in public, or heights.

Sometimes I wonder if there is a reason I have leukemia. Othertimes I think it is just bad luck. Either way, I still have to deal with it. I am lucky to have an easy treatment and great support around me. Hopefully, I will never need distraction like that boy did in my study. Although, I do have a bone marrow biopsy coming up next month. Something to look forward to.

Updates

It has been a while since I last posted. I have been busy working on the Light the Night Fundraising campaign and trying to raise money with Team Gershon. We have a lot of people signed up to participate in the event and we are already raising money. I think in the couple of weeks since we started we have raised about $1500. I am hoping that we can do a lot more, but it is a great start. For more information about the Light the Night event see my previous post.

Last week, a press release linked Gleevec use to heart failure. The articles seemed to imply that using Gleevec increases your chances of heart failure. My poor grandmother was frantic when she saw the information flash by on CNN. I told her I would look into this and find out what I could. I immediately went to my scientific resources. As I was trained to do during graduate school, I never rely on the press to report on scientific findings. Instead, I went to the original article which was published in a journal called Nature Medicine. The study reported on 10 individuals who were taking Gleevec and also had heart failure as well as a mice study. It generally found that these individuals who take Gleevec might have an increased risk for heart problems. This does not mean that anyone should stop taking Gleevec, but heart monitoring might be warranted in addition to other regular testing. I also was in touch with my doctor who said that he was not going to be ordering any additional tests at this time, but we could talk about this at our appointment in September. Needless to say, this was a bit of a scare, but my estimation is that this information was blown a little out of proportion by the press.

In other news, I have written before about Erin Zammett Ruddy who was diagnosed with CML in 2001 and writes a column in Glamour Magazine about her experiences with CML and Gleevec. She has also written a book called My (So-Called) Normal Life, which is excellent. She has just started her own blog called Life with Cancer. You can click on the link to read and comment about her experiences. She is a very honest and funny writer if you have not previously read her columns in Glamour.