Thursday, September 25, 2014

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.

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13 Comments:

Anonymous Anonymous said...

Beautifully written and very inspiring!

September 26, 2014 at 5:57 AM  
Anonymous Anonymous said...

You are an inspiration to us all Brian! Healthful living is underrated... Thanks for a smile and a great post.

September 26, 2014 at 8:46 AM  
Blogger Ynes Tom said...

Congrats Brian. It has been 5 years this month since my diagnosis and feel the same way you do. I am very lucky to have dodged the BMT with the Imbruvica trial. Here is some news about the combination of Imbruvica with ABT-199
http://medicalxpress.com/news/2014-09-potential-drug-combination-mantle-cell.html

September 26, 2014 at 8:35 PM  
Anonymous Beverley Paine said...

Thanks Brian, love your blog and your optimism and your dedication to sharing information. So glad you're here!

September 26, 2014 at 10:31 PM  
Anonymous Anonymous said...

I am not sure you know what an inspiration you are to so many of us who share this diagnosis. You are a bright light offering hope and encouragement to us all. Wishing you many more healthy years ahead to enjoy your beautiful family.

September 27, 2014 at 11:58 AM  
Anonymous Anonymous said...

Thanks Brian, most encouraging for me right now as I battle away with Ibrutinib for almost 3 weeks. Things are much worse than prior to treatment, it's hard getting through a day/night with heart pounding, little energy and breathlessness. Would appreciate everyone's prayers. Thank you.

September 27, 2014 at 12:28 PM  
Anonymous Anonymous said...

Thank you, Brian, for everything you are doing for the CLL community. Wishing you many good years ahead.

September 27, 2014 at 2:39 PM  
Blogger Nick Sowers said...

every day is a happy new year - shanah tovah!

September 27, 2014 at 8:49 PM  
Anonymous Anonymous said...

Thank you for sharing your encouraging words with the rest of the CLL community! I look forward to growing old with the rest of the group.

September 30, 2014 at 12:20 PM  
Anonymous Anonymous said...

Thanks Brian, love you blog. Very encouraging.

October 1, 2014 at 9:23 PM  
Anonymous Anonymous said...

Ah, somehow I missed your anniversary update, even though I look at your blog at least once a week. Again, thanks for blogging and keeping us updated on what's going on in the CLL community. It really helps that you're one of us CLL people as well as a physician. As several others have already said, you are indeed an inspiration! --AM (2 1/2 years since diagnosis and hoping for 30 more)

October 7, 2014 at 4:55 PM  
Anonymous Anonymous said...

All the best wishes to you, Brian! I have been reading your blog since my diagnosis in 2008. Very inspiring! I have been on Ibrutinib for 2 years now and feel good! Thank you for your kind heart and sharing of very important knowledge. It helps a lot! Good health to you for many years!!! Marina

October 17, 2014 at 8:14 AM  
Anonymous Anonymous said...

Who wouldn't love this post? Huge congrats, Brian.

October 19, 2014 at 8:41 PM  

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