A response to an important comment: CLL has pretty much ruined my life

Here is a heartfelt and important comment that honestly address many of the issues of those of us with a cancer diagnosis.

I was diagnosed at 48 and CLL has pretty much ruined much of my life. I felt I could not make any long-term plans as I could die with any cold or sore throat. I could not travel to second- or third-world countries. I could not be in a remote area for more than a few days. No insurance would cover me. Long-term and life insurance was beyond me. I could not provide for my family. I had to retire early, because if I died while still working, my family would get nothing but $2,000. If I died while retired, they would get part of my pension for as long as they lived. It's one thing to get CLL at 68, the average age of onset; it's quite another to get it in one's forties. And I know that I'm not alone, other cancers do the same thing, take years away from people. Look at the children who die from cancer. It's even worse for them. We probably spend more on watching sports in this country than on cancer research. Whoopie.

By Anonymous on A Message from Steve K to a newbie with CLL at 8:03 AM

Here is a slightly expanded version of my response.

To Diagnosed at 48

I have no answers for you, only reflections on what you have shared and how I struggled with some but not all of the same issues.

As you so clearly state CLL stinks. Cancer stinks. And it is reckless and indiscriminate and unfair. You point out all the financial woes that CLL brings to the forefront and they are very real. And they are yet another worry and injustice on top of the health concerns.

Facing our own mortality is always a challenge, but one I would have preferred to postponed to my 70s or 80s, but I had no choice. I am fighting to live, but I am aware of the odds. I keep my eye on the goal to live a long and healthy life, but I hope I am somewhat prepared for the possibility I will not be so lucky. I just don't spend much time there. It is not as a rewarding or fun place as is the here and now. What the gut knowledge of my own mortality does do is to add a sense of urgency and joy to my everyday life. Times is so precious to me.

Finally, the issue of how society spends its money. We, as part of the cancer survivor community, need to appeal to the money spending public for our share of the dollars, competing with TV and sports and the latest electronics. We have to give people something that makes them feel good about the money they spend on saving us. We have to compete for their dollars. We need to sell CLL research and care.

Stay strong. We are all in this together.

Brian

By Brian Koffman on A Message from Steve K to a newbie with CLL at 11:59 AM