What started as a personal journey of a doctor turned patient morphed into a way to share what’s universal in dealing with cancer, in my case a nasty leukemia (CLL), a failed transplant and a successful clinical trial. The telling of my journey has become a journey to teach about CLL, related blood issues and all cancers. Please visit our new website http://cllsociety.org for the latest news and information. Smart patients get smart care™. If you want to reach me, email bkoffmanMD@gmail.com
Labels: Bernie Gilpin NOT FAIR death
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.
I wish I had written this, but it is too good not to share. It is part of a longer letter from the latest update in http://updates.clltopics.org/
Chaya's website is a must read for anyone with CLL and Steve's advice is good for all of us with leukemia or cancer or not.
I once heard a rabbi with non-Hodgkin's Lymphoma say we are all in remission, just some of know it.
This life with end, but it hasn't yet if you are reading this.
To life. Thanks Steve
Here's what he had to say:
I consider myself lucky. The biggest challenge I faced after being diagnosed with CLL was coming to grips with the fact that, like every human before me, I will not be immortal. I was 45 when I was diagnosed with CLL. At that time it was easy to get trapped into playing the “will I make it to x event” mind game. X was defined by any significant family life event that might occur at some distant point in the future. Eventually I realized it was a game that could not be won. While it was important to make time to grieve for the loss of immortality, experience the fear of the diagnosis of cancer, and express rage and every other emotion that goes along with being a cancer patient, there are only so many hours in the day. If I spent too much time concerned with what might happen in the future, I could not feel, see, and experience the joy, love, happiness, and life that surrounded me each day. It helped me to see that happiness is a way of life that I can choose rather than a goal to achieve at the end of a long life. If I could find a little love and happiness each day, I would be happy and at peace at the end of the journey, no matter where it took me or how long it lasted.
Labels: CLL Mortality Life
Labels: TSA scanners
Schlesinger Associates, a national marketing research firm, is conducting a national study among patients who have been diagnosed with Chronic Lymphocytic Leukemia (CLL). We are looking for a variety of patients Stages 3 & 4, who have been diagnosed in the past 5 years and are either currently undergoing treatment OR have been in remission for less than 6 months.
Patients will participate in a 2-hour “live” online focus group via webcam followed by a 3-day long online bulletin board discussion. For the online focus group, the patients will be able to participate from the comfort of their own home, in front of their computer. We will provide patients with a webcam if they don’t already have one.
The online focus groups will take place on December 7th for Stage 3 patients and on December 8th for Stage 4 patients. Both groups will be held from 6:00pm-8:00pm EST.
In appreciation for their time & opinions, patients will receive a $300 honorarium for participating in the online focus group and the follow-up bulletin board discussion. We are also offering doctors & nurses a $100 referral fee for anyone that refers patients that qualify & participate in the study. This can be donated to you OR your organization.
*PLEASE NOTE*, NO ATTEMPT WILL BE MADE TO SELL YOU ANYTHING, this is strictly for research purposes ONLY.
If you are interested in participating in this study or would like more information, please call:
1-800-981-3923 and ask for
Trevina at ext. 241 or Sheryl B. at ext. 289
Labels: Marketing Research