Monday, December 13, 2010

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

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3 Comments:

Blogger Barry B. said...

As the anonymous author of that complaint, thank you for your response.

As I 'celebrated' my 12 year anniversary, a woman at my Lutheran church congratulated me. I suppose that's nice (of course), but I wanted to tell her that CLL totally altered my life and made it very much less enjoyable.

As I lay in bed the night after treatment with flavopiridol, very much in pain and misery in my gut, I wondered how much of that I would take if it never ended. Not much.

The physical pain of my CLL comes and goes, and I am able to in-between live a more or less normal life (which I am very thankful for). However, I can't make too many plans, except for updating my will and making sure my family is well-cared for after I'm gone. Yet that is the reality for many of us who faced cancer when we were relatively (or actually) young.

Reading an article about how we all are bathed in electromagnetic smog (as they call it) and the health effects of such, I think back to the years I worked in a building right under one of those massive cell towers.

Did that help cause my CLL? I don't know, but I do know that many in our office where struck by cancer. Brain, breast, leukemia, bone, liver, and lymphoma to mention a few. We probably had about 20 cases of cancer in 300 people, all youngish, in the years I've worked there. I don't remember anyone getting cancer when we worked downtown. Who knows.

December 20, 2010 at 10:38 AM  
Blogger Tina said...

I'm a 46yo female and I was diagnosed with CLL almost three years ago. I had CLL for about seven years @ diagnosis, and I have maybe three years left... I recently learned that it's unmutated with the 17p deletion (which is what gives my CLL a shelf-life of less than ten years.)

Yes, it certainly does stink and I can relate wholeheartedly with the feeling of not being able to make plans and having to make tough choices and feeling like I'm being cheated. On the other hand, this experience has also opened my eyes to the life that is right here, right now, right in front of me...and I'm not giving up! I want to live to the fullest whatever time I have left, and I want to do whatever I can to at least feel healthy; mentally and physically.

I was online tonight looking for some likeness, someone to relate to and someone for whom I could feel the compassion and understanding that I so often find missing in my own experience. I just wanted to read a blog that said something I could relate to, and a blog that perhaps said something that I seem to not be able to say for myself. I also longed to find inspiration from someone with a similarly difficult CLL case. I found all of this with both of you, and so I just wanted to say thanks for sharing and thanks for being out here!

I wish you both the very best! Thanks again!

~Good Night

January 16, 2011 at 12:22 AM  
Blogger Be the one said...

The physical pain of my CLL comes and goes, and I am able to in-between live a more or less normal life (which I am very thankful for). However, I can't make too many plans, except for updating my will and making sure my family is well-cared for after I'm gone. Yet that is the reality for many of us who faced cancer when we were relatively (or actually) young.

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