Sunday, September 9, 2012

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.


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Anonymous Anonymous said...

That is really a nice post! Alison.

September 9, 2012 at 6:15 AM  
Blogger Dragon Slayer said...

I'm clapping for you. The 7 years with CLL have served you well. You've been a sounding board, devils advocate and an inspiration to so many others with CLL. You had a major part in saving my life, something I'll never forget. I speak for many when I say thank you.

May the next 7 years be happy and prosperous for you. You deserve the best.

September 9, 2012 at 8:16 AM  
Anonymous Anonymous said...

An excellent overview of CLL which shows so clearly that this is not a one size fits all disease. Having this illness since 2006 has been a nonevent in my life since I have seemingly only the good parts if I might call them that and have been asymtematic for this entire time. Wishing you all the best.

September 9, 2012 at 9:29 AM  
Anonymous Anonymous said...

And I applaud you AND your granddaughter !!

All the best,
Lynn who feels better knowing the "we" includes you.

September 9, 2012 at 9:37 AM  
Anonymous Anonymous said...

Brian you are a brilliant writer. I am printing this and sticking it somewhere prominent. The fridge beckons and so it will sit there squished between my 2 year old's latest creation, my 5 year old's photograph and 8 year old's get well soon card to Mummy. As someone who has never taken the time to smell the roses, this really would be one of the best things that has happened to me if I were not hurtling towards chemo and what looks likely to be a transplant soon after, possibly before my 40th birthday. We are all in this together. Stay well. Deborah in Melbourne

September 9, 2012 at 4:12 PM  
Anonymous Anonymous said...

Thank you for this uplifting post!
Kathy in Ohio

September 10, 2012 at 7:17 AM  
Blogger Unknown said...

Congratulations Brian! What a joy it has been reading your blog, it is very uplifting. I'm a CLLer as well and I always appreciate your posts they are very informative. Thanks David

September 16, 2012 at 8:15 PM  
Blogger pkenn said...

"We are all in this together!" will always be your line, and you live it every day in the extraordinary ways that you reach out to others. While I'd rather not be "in this", I'm certainly grateful to be in it with you!

September 27, 2012 at 9:23 PM  
Anonymous Anonymous said...

Good luck to you Dr. I hope your treatment continues to serve you well and healthy enough to enjoy life.

Just stumbled upon your blog
From nyc

October 6, 2012 at 1:52 AM  
Blogger oh dad said...

Thanks Brian! I just celebrated my fifth Thanksgiving since "D" day. Making your acquaintance and following your blog have been two of the many great things that have happened to me since that day.

November 25, 2012 at 4:33 AM  

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