It's Been Nine Years Since my Diagnosis of CLL (Chronic Lymphocytic Leukemia)

Me (today, the 1st day of the Jewish NewYear 5775 or Sept 25, 2014)

It's been nine years since my diagnosis of CLL and am so happy to be alive and arguably in better health that I was when I received the life changing news in September of 2005.

When I was first told I had an aggressive version of an incurable cancer, I know little about CLL and what I quickly learned was discouraging.

Nothing back in 2005 had yet been shown to add a day to our lives. And the last few years alive with our disease were predicted to be full of misery.

Ibrutinib and idelalisib were just been being born in chemist's vials and were years away from first in human experiments.

I made appointment with our family lawyer to get my affairs in order almost sooner than I started my long term relationship with the wise and kind Dr. Tom Kipps.

I became a raw foodie but couldn't handle it and moved a bit closer to the center to become just a strict and mostly organic vegan. I cut back on my crazy workload and started to work out at the gym with weights for the first time in my life. I worry less and celebrate more.

I got no help with imbibing horrible tasting Chinese herbs that I brewed up myself or from a year of acupuncture. Nothing came of many other well intentioned but ultimately impotent alternative healing approaches, but I sure tried.

The cancer and its complications marched on.

Multiple hospitalizations for life threatening ITP, an emergency splenectomy where I lost half my blood, a failed clinical trial and bone marrow transplant, a move to Columbus, Ohio for the winter 2 and 1/2 years ago to get on an ibrutinib trial at OSU, and here I am, feeling better than ever.

I seen thousands of miles of travel in six continents, two daughters get married, my father's passing, and the birth of my first two granddaughters.

I have learned much from my mistakes and my fortunate choices, and I love to share what my experience, asking a lot of hard questions of the experts, and a ton of late night reading has taught me about surviving.

My hair is grey, my belly's flatter and I sure have learned a lot of hematology for a family doctor.

But best of all, I have met some of the most amazing people ever from all over the world, not despite, but directly because of my cancer.

My battle is hardly over, but I am still out there swinging.

Life is good.

Stay strong my friends. We are all in this together.

CLL: Eight years and counting

"The whole world is a very narrow bridge. The important thing is not be afraid."

Rabbi Nachman of Breslov

Walking 30 feet up on a telephone pole at the Cancer Advocate Leadership Conference at Miraval

Thank you Escape and Bag It

It was eight years ago on September 7th, 2005 that I received the lab results that changed my life forever and was handed the diagnosis of the incurable (and soon after the added adjectives of aggressive and complex) chronic lymphocytic leukemia.

I have riffed on these anniversaries before, but this one almost passed me by un-noted.

Why? Because recently my focus has shifted from my personal struggles to my efforts to increase awareness of how CLL therapy is changing.

Yes, my personal future is still unclear. Yes, my CLL is still hanging out in my mesenteric nodes and a small percentage of my marrow. Yes, it has evolved into a nastier dance partner over the eight years of this waltz. No, I am not cured, just very well controlled.

Though I would obviously prefer to get off the dance floor once and for all, or at least have a more benign partner who is not always trying to trip me up, I am just fine with living with a well mannered cancer. Fine enough to spend more of my energies in shining a light that might guide others to similar happy outcomes. Fine enough to teach and advocate and support.

I am in the process of putting together my non-profit and working with other not for profits to move forward on the mission of smarter care for all those with CLL and related B cell cancers.

Of course, when I was at XViwCLL 2013 in Cologne last week, I paid close attention to the news and research that might impact my health personally. But the bulk of my efforts in Germany were outward. Please understand that that is not an entirely selfless or strictly altruistic act, but as many have argued before me, a recognition of how much healthier it makes me to share and spread my good fortune. It is so much better for me personally to look to the needs of the whole CLL community as well as my own.

So I almost missed my "anniversary" because my focus was on the future, not the past.

Stay strong.

We are all in this together.

I am moving later  this week, so my posts may be a bit more sporadic over the next weeks or so.

Seven Years Ago Today CLL Entered My Life

Seven years ago my wife and I were happily planning the home wedding for my oldest daughter. Now that marriage has given us our number one granddaughter who applauds her own first time success at standing up. Today. It is so good to be alive. Seven years ago, odds were not looking so good that I would reach this day. I am one lucky soul.

Seven years ago, it started so innocently. Some lumps at the back of my neck at the hairline. Soft, mobile, not tender. The symbol for cancer is the crab, with its pincers grabbing and invading. A tenacious rough visitor who clings to its hard won territory and gets ready to expand its reach. This felt nothing like that. These were smooth and rubbery, but persistent. I was overdue for lab work so I ordered blood work on myself (one of the advantages of being a doctor)  including the usual lipid panel and blood chemistries and a CBC on September 7, 2005.

The next day, Sept 8, 2005, seven years ago today, rocked my world. I remember being happy that  my cholesterol was so good, and that my chemistries were are fine. What did that matter when my white count was way too high and it was all lymphocytes?

While it would be more than a week before the final diagnosis was confirmed, that day everything changed. A disease enters our life when we decide we have had enough of the worry or the uncertainty or the pain or the itch or the whatever. The limit of tolerance or the limit of anxiety has been exceeded and we need relief, but it comes with a price tag. We seek help. We consult a doctor who makes a diagnosis. Many of these labels,  a sprain or bronchitis or a migraine are temporary. Many are not. Professor Ian McWhinney, the father of family medicine in Canada, and one of my mentors laid the groundwork of this understanding about how a word, a disease comes to our lives. Some maladies are amorphous, nameless and usually evanescent. All the bad one ones have names. and if it is compounded, it's usually really bad. Get scared if it's three words long and the first word isn't benign.

My three letter monster, CLL or chronic lymphocytic leukemia has been my traveling companion since that fateful day seven years ago. No, that's not right, because more than once it has been the driver, grabbed the steering wheel and heading us over a cliff until I could wrench back control. The first time was when another three letter hitchhiker, ITP squeezed into the front seat and sent us careening towards the rocks over and over again.

Cancer patients talk about pre and post diagnosis as different universes, as an epic paradigm shifts  whether we want one or not . We talk about "the new normal". We talk about altered priorities, lost trivialities, and new imperatives.

A cancer diagnosis has the opportunity to be a crash course in everything.

I quoted before from the late great Gilda Radner who said about her cancer: If it wasn't for the downside, everyone would want it.

But what a downside! Let us be honest. It comes with the real risk of intractable pain, increasing disability, bankrupting expenses, unimaginable inconvenience and stolen time, overwhelming fatigue, annoying side effects, unknown fears and of course death too soon, too soon, too soon.

The upside too is amazing. Life becomes purposeful, more focused, more urgent, more timely. The junk melts away. New friends and challenges and interests and opportunities appear. A brave new world. A chance to make a difference, a chance to beat the odds, blaze new trails and drags others with us on the road to, dare. I say it, a cure.

It seems possible now. The accepted wisdom is that the only possible path to cure for CLL is a transplant. Maybe that is changing. My transplant failed, as it does for about half of those who go that route. And it kills and mains too many.

Maybe the ibrutinib or GS1101 or GA101 will buy me and others the time needed for the CLL gurus to perfect the CAR-T or the next winning cocktail to get us to the promised land of no more leukemia, forever.

Much has changed in the seven years since my diagnosis. Then they was no therapy even shown to slow down the disease or add a day to survival. Options were limited to toxic drug combos or  the go for broke transplant.

With my nasty mix of 11q deletion, complex karyotype, CD38+, elevated B2M. strongly positive ZAP 70, 100% unmutated, aggressive ITP, and the recent addition of the worst or the worst, 17p del, I have more than beaten the odds.

I should be long gone. But instead, I am feeling stronger than ever with less fatigue, with blood counts near normal and nodes that are getting harder to find.

Seven years out and I am charging ahead to see how I help more CLLers get the best possible care and push the scientists to not take their feet off the accelerator. We aren't there yet and our path is not yet clear, but we are closer and the palliative options are increasingly gentle and effective. This is all good.

Although there are no guarantees and everything could chance in a heartbeat, and moreover, G-d forbid, I don't wish to invite trouble through trumpeting my good fortune, but the truth is that seven years out and my life has never been better and my hopes for all us CLLers have never been higher.

I am so grateful to all of you who follow along here and elsewhere and who share your stories.

The best is yet to come. Please stay the course. Our future is bright.

My granddaughter stands up for the first time and applauds herself. Does it get any better.

I see where President Clinton stole my best line at the Democratic convention.

But I stole it first.

WE ARE ALL IN THIS TOGETHER.

Haircut and timelines

Until this weekend, I hadn't had a haircut in nearly a year. I am lecturing in Manhattan and I thought the iconic absent minded professor look was not the note I wanted to strike. I left a bit of the curl in the bangs. What do think?

A little more than three year and half years ago, the stubborn lumps I had noticed at my hairline convinced me to get blood work. It would should show the high lymphocyte count, the tell tale sign of chronic lymphocytic leukemia. A month later, the diagnosis was confirmed with flow cytometry.

I have now lived about half the expected life expectancy for some one with my type of cancer. But as we know, statistics are for groups, not individuals.

A little more than two and half  years ago I noticed the spontaneous bruising and red spots that signaled my ITP. It almost killed me four or five times. Those scary days are happily far behind me.

Eight months I had my transplant. About three months ago, it became clear I had lost the graft.

Eleven days ago, I saw the CT images that foretold I will doing the graft dance again.

Life goes on.