My Biggest Fear

I can only think of one or two people with whom I’ve shared this, but it seemed like a good topic for today. My guide for and inspiration in writing this blog is Leroy Sievers. He is the one with the cancer blog on the NPR website and had the “Living with Cancer” special on PBS with Ted Koppel last May. His NPR blog address is…

http://www.npr.org/blogs/mycancer/

I follow his blog daily. I’ve submitted comments to his blog 18 times in the past 4 months. Based on the number of comments he gets daily, I’m guessing his daily readership to be in lower few thousand of people per day. It is a relatively large community. Between Leroy and those that submit comments, the blog provides hope, emotional insight, treatment insight, and a real sense of an entire population that that has walked in his shoes, the perspective from those that care for someone in Leroy’s situation, and writings from people who have lost loved ones to cancer.

I can’t say that I feel close to Leroy personally, I’ve never met him. But I do empathize with him and many of his readers. It’s almost as if Leroy and I were on the same roller coaster with its ups and downs, but currently he is a few train car ahead of me. Sometimes we’re in the same car together; sometimes I’m the one ahead of him.

Last Monday he had a major operation. The cancer had spread to the bone in his spine and a prior surgery to remove that cancer had left him in constant pain. The surgery Monday was to replace one (or more) of his vertebra contaminated with cancer and to alleviate the pain. Ted Koppel, who is a personal friend of Leroy’s, provided a blog update this past Friday. Bottom line, the operation seems to have been “a great success,” but (there’s that but from Cancer World again) during the procedure he suffered a minor stroke. The stroke caused a loss of peripheral vision in his left eye. They call it tunnel vision. “The doctors are not optimist that it [Leroy’s vision] will come back.” This has shaken Leroy pretty bad. It means he will not be able to drive again.

There were 100s of comments on his blog leading up to Leroy’s operation. 98% plus of them were well wishes and prayers. They were all generous and taken in the spirit in which they were delivered. There were a few that resonated with me in a different way; it was the other 1 to 2%. These were comments from people who highlighted the seriousness of the operation. What I don’t think many people fully understand who do not have cancer (or other serious diseases) is the impact of the treatment on our bodies. Our bodies can only take so much. The surgeries, chemotherapies, and radiation all cause a high level of stress, not to mention the actual physical impact, on the body of these treatments. There is a balance that must be taken into consideration and we must rely on our doctors to help us make those decisions where balance comes into play. Since everyone is different and since some medical decisions can not be made until game time (e.g., how much tissue needs to be cut away before clean margins can be found), this is not an exact science. We, the doctors and the patients are in this together. Speaking for myself, I have signed dozens of forms over the past 3 years providing consent and acknowledgement of the risks of my procedures. It’s usually a pretty long list of possible negative effects. The chance of anyone of them actually happening is generally small, but they are there for a reason… TO INFORM THE PATIENT OF THE RISKS.

This has rambled on long enough. So, what’s my biggest fear? If you remember back to the beginning of this blog entry, that was the title. My biggest fear is being permanently incapacitated. I’m a very independent person. I have been since as long as I can remember. Even at 2 or 3 years old, I was independent. Being incapacitated scares me more than death. There is also a fine line between being disabled and being incapacitated. That line can change over time. I think the main difference between the two is that a disability can be overcome, being incapacitated can not be overcome, it is permanent and seriously impacts one’s quality of life.

I hope this provided you with some useful insight and food for thought. As soon as I hear from my doctors on the biopsy results from Friday, I’ll share them with you.

Take care everyone.