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.

Death and Renewal

Today is the winter solstice, the shortest, darkest, blackest day of the year.

Six months ago on June 21, the first day of summer, the brightest longest day of the year, I lost my father.

I have said Kaddish (the Jewish prayer for the dead) every Sabbath for him except thrice where a could not find a minion, the 10 Jews necessary to formally pray. It happened once in Cusco, Peru, once in a distant suburb of Dallas near the airport, and once on the road in Arizona. Other than that, I have enjoyed hospitality at all types of temples and synagogues all over the USA.

Though Kaddish is prayed ostensibly to guide his soul to a well deserved place of rest, it is more for me to remember what a son received and a father gave. We were good friends and honest counsel for each other, especially over the last part of out 60 years together. I miss him so much it still hurts .

I lost a sweet friend one year and one day ago. Another father but of three young children, not of one older son about to enter his seventh decade like my 84 year old father. Robert died of CLL too young, too soon, too unfairly, and with too much love left to give and receive.

Not much in life is guaranteed, but one thing for sure is that the days will grow longer and the nights shorter.

That must be enough for now.

The world of CLL is changing fast and it's good.

For the last week, I have wrestled long hours with many demons in the form of questions of insurance and chance and convenience and travel and risk and unknowns and timing and money.

I have had help from so many especially my family and a few dear friends, but also my insurance broker and my case manager and my local oncologist.

In CLL, there are three types of crises. The disease related ones, the treatment related ones, and the decision related one.

I have just slayed the last one- for now. I have made my next treatment decision.

I am gambling everything on getting into and doing great in the Ohio State University trials that include PCI-32765.

I am full of hope.

Tomorrow will be less dark than today for sure.

Fewer long shadows, more sunlight.

PS I have not forgotten my promise of a recounting of ASH. First I needed to heal myself. Or at least decide what was my my chance of getting to that place.

Another letter from a patient on faith, hope, fighting, planning, and luck

As a relatively successful basketball coach and teacher, if there is only one thing that I have learned it is this:  Out plan, out work, out rehearse, out scout and out practice your opponent and you will place yourself in a situation where you are controlling as many variables as you can.  Hope is wonderful and motivating but hope without preparation is mind fluff.  Luck is a variable.  Luck or the lack of luck can never be discounted in the human condition but as John Wooden so accurately said, “…luck is more often than not a byproduct of hard work…”.

 

Faith is essential as it confirms and embraces our efforts but it still comes down to fighting the good fight each and every day.

 

Keep fighting as I want to see you back at work soon.

"Relatively successful" My friend is being modest: Teacher of the Year in Orange County, many time champion coach, world class safari guide, and just a great guy. 

I think I will let my patients do more of the writing for me.

Debunking Common Wisdom and Positive Aphorisms

If you will it, it's no dream.

And a thousand variations.

Sounds good. What possibly could be wrong that sweet sentiment?

Plenty.

I don't know one CLLer or cancer patient who doesn't visualize and pray and scrape all their consciousness into a packet aimed at a future of no CLL or cancer.

And those, albeit very well-intended who dare to say that we are not pure enough in our thoughts, that we must KNOW and not simply hope for our favored future, those kind hearted souls risk punishing the already punished. I sense how much they are trying to help, and I do appreciate it, but they unintentionally suggest that if only we were purer or stronger in our thoughts and prayers, we would be well on our way to a cure. And the devil in me wonders if there is a hint of the holier than thou in some of their admonitions to us victims that we must try just a little bit harder. 

Medieval theodicy. The "SECRET" be damned.

I do encourage a positive attitude. I suspect it helps, a little. But it is no plan for taking on a killer in a dark alley, and there is actually better evidence that a fighting contrarian attitude has more survival advantage. Meditation probably helps too.

Hope is a different matter, becomes it gets you going. It gets you looking for options, be they psychic or medical, nutritional or crystal,  divine or nano, and that makes sense. Look to the future. 

If prayer is in your tool box as a way to do an end run around the oncoming linemen of the Apocalypse, then run and pray as hard as you can.

If some secret Amazon herb is going to heal you, but only if you believe, then believe. Truly believe. 

If the answer is Ayuvedic, then turn to the east. Meditate on that.

Whatever floats your boat.

But cover your bets, keep you eyes wide, and be prepared to abandon ship at a moment's notice.

The evidence on prayer is equivocal at best, but I am a cautiously optimistic believer, and welcome every prayer and good vibe aimed in my direction.  Who knows? Who really knows? Not me for sure.  

Here's what I do KNOW.

I don't know how I am going to win, just that I will.  The details are yet to be worked out. Even the definition of victory is ephemeral.

All my little hopes for this and that, they all add up to a medical certainty of a way out of this quagmire. I just wish the map didn't keep changing.

People who know me, know that I claim no stranglehold on the truth. 

Maybe my healing will come from prayers and I welcome them.

Maybe it will come from my hope and belief in my diet and supplements and even  Zeolite. 

But maybe it will come from my tough contrarian attitude.

In a future post I will debunk or should I say deconstruct: What doesn't kill you, makes you stronger.