Wednesday, December 22, 2010


Beta 2 microglobulin (B2M) is an inexpensive test that is a measure of tumor burden and thus helps predict how well I or any leukemia patients will do over the next few years. Actually it predicts what are odds of being alive in five years.

Mine is sneaking up . Normal is below 2.5 Mine is 2.9. This is not a huge number, but it is a jump from 2.2 when last checked a few months ago, and that is despite aggressive therapy with rituximab in the interim that should have lowered the load of cancer cells. MDACC shows decreased survival in those patients >2.5

Moreover, my trend is up. It was only 1.4 about a year ago.

My nodes are also a touch bigger, but at least the palpable ones are still mostly small. Dr Kipps didn't say they had grown, but he also didn't answer my question on how they compared to last visit in August. That is a sure sign. If he can't give me good news, he gave me no news.

My absolute lymphocyte count is now no longer below normal. It has crept back into normal range. Not a big thing in itself.

All of these are of course statistical markers for a group and of little value in predicting the future for each individual. Though I only half believe that.

There is good news, in fact great news.

My platelets are fabulous:421,000 and the rest of my CBC is good. So is my LDH, another less specific tumor marker.

None of this should set off panic alarms, but it does mean I should be prepared to act again, likely not long after my travels this winter.

It is good I am doing these wonderful trips soon. The future is uncertain.

It suggests as my friend Chaya predicted, my next action trigger will be my CLL, not my ITP. And it will be a proactive decision point. Waiting until my hand is forced is waiting too long.

My bone marrow biopsy will be in April with a CT to get the real scoop on my pesky nodes around the same time. That will be more definitive.

Likely I am reading too much into some subtle differences that don't even qualify as benchmarks for change and certainly demand no action other than monitoring.

I am in a pretty sensitized state with the two recent deaths of friends with CLL.

Maybe the direction will turn more positive with the next lab. I will be watching carefully and reading the tea leaves. Probably too intently. Perhaps I should just drink the tea.

I swear that too great a lucidity is a disease. (Doestoevsky)

Many others face much bigger, scarier and more imminent enemies and some have just recently lost the whole war and are gone.

I am still here, still noodling about this cancer. Still making plans and living life with gusto. Tears of joy, tears of grief.

As I was finishing this short note, the doorbell rang for a package delivery. When I stepped outside to greet the post woman, I looked to the west and there was the sun shining for the first time in almost a week of rain.

When I looked to the east, there was a rainbow.

Five minutes later it was gone.

Doors open, doors close.

But when the Lord gets ready, you gotta move. (Gary Davis; Fred Mcdowell)

You gotta move.


Monday, December 20, 2010

Say it isn't so

I am devastated, in shock, sadden to my bones with the sudden loss of a very young husband and father of small children to CLL a few months post transplant. This is the second death in a week in our small support group.

I hate this "good" cancer.


Wednesday, December 15, 2010

IT'S NOT FAIR: Rest in Peace Bernie Gilpin

I am diminished, deflated, and depressed by the death of another of our OC band of CLL patients who meet most months to support each other. Bernie was a smart and kind and gentle person. So alive, sitting in my living room, telling his story. He will be missed. It's all too sad.

He loved to be out on his boat. May G-d now offer his wife and sons a safe harbor in their rough waters.

We are not that many in our small CLL support group, and we are getting fewer, for the very worst reason.

CLL stinks. No two ways about it.

I can talk all I want about the opportunities to reassess and to live a more meaningful life because of cancer, but I want to scream about QUANTITY and not just QUALITY of life when someone like Bernie who still had so much to give and so many reasons to live is so quickly gone.

I can't stay there in that crucible of pain, the old anguish of theodicy, the injustice of it all. I can't stay there or I will crack.

So I will move on to fighting for my life and those that I can help to add years to their life and life to their years by sharing what little that I have learned about how to best wage this mortal combat.

But first, I must let my heart beat a little more heavily for the loss I feel, and the anger and the fear and sadness.

I am still that same frightened 2 year old that I was 57 years ago crying that IT'S NOT FAIR.


Unlike for his family, soon enough, it will be time for me to get over it. I will try to dispassionately decipher what lessons can be culled from this tragedy. And share them.

But not yet. Now I must mourn.


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.


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

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Sunday, December 12, 2010

A Message from Steve K to a newbie with CLL

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

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.


Wednesday, December 8, 2010

Only in California

Or maybe Australia.

A surfboard menorah in Laguna Beach at sunset.

It is the season of miracles. I wish all my friends the miracles they need.

Life is sweet. Life is a beach.

Monday, December 6, 2010

Can we trust the TSA?

Please check it out please. And comment.

Honestly, this scares me as a patient with CLL. The dose may be low, but it concentrated in the skin, and those of us with CLL already have a much higher incidence of skin cancer.

You see the fact that the radiation doesn't penetrate as deep is good for the internal organs, but its effects on the skin and underlying fat are yet to be determined.

Do we trust the government who calmed our worries about Agent Orange or told us not to worry and then prevented us from suing when they allowed toxic doses of mercury in our infants vaccines or who lined up soldiers to witness radioactive blasts at a "safe distance"?

Or do we trust the scientists?

Now I admit not all physicians line up with the UCSF doctors who signed the letter, but at best, it says that it is an open question.

We are all the guinea pigs. And those of us with suppressed immune systems may be more like the canaries in a coal mine.

Seems I am going to need to get used to being groped when I travel. Adds new considerations to the question -boxers or jockeys?


Wednesday, December 1, 2010

Marketing Research on CLL Opportunity

This is a flyer I received from a marketing research company.

I and several friends with CLL had a positive experience with a similar offer not that long ago, so I am bringing it to you attention

If you are interested and if you qualify, it is a chance to make $300 and I will be donating the referral money to CLL research so please mention my name.

What it is not, is a chance to influence new therapies or drug development. It is marketing research, pure and simple.

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