Feeling Better

1901 Life Magazine Cover

I slept well past noon today- one of many things that I am thankful for, and even took a long post meal nap, and except for a sore, slightly pink, and swollen upper arm where I got the vaccine, I am feeling much better. Still tired and a bit achy, but clearly on the mend.

I assume that yesterday's high white count and low blood pressure were an exaggerated response to the PREVNAR 13.

Or perhaps I was about to get sick and the IVIG infusion aborted the pathogen's attack.

I will never know, but I am grateful for feeling much better.

Our Thanksgiving vegan feast with family was lovely. I was righteously teased by my wife and my boys for some of my idiosyncrasies, we listened to Klezmer music, lit the menorah, and ate latkes with vegan sore cream and homemade apple sauce,  homemade stuffing with  homemade vegan gravy, salad, broccoli, stuffed baked pumpkins, seiten with onions,  homemade pumpkin pies, and Ben brought his homemade amazing stuffed baked apples served with coconut milk "ice- creme".  Sent the boys home with tons of leftovers.

An amazing feast, rightly designed to overwhelm with its abundance this one time a year.

Many of us have much to be thankful for, but until we create the best opportunities for all of us with CLL in particular and cancer in general, until every one of us, has had what I have had, the best chance for a long and meaningful life post diagnosis, our work is not done.

Happy Thanksgiving, my friends.

No Bloody Nose is Going to Spoil my Thanksgiving

Acting on the advice of Dr. Byrd, last night I went out and after some research bought a warm mist humidifier for our bedroom. I was already using Bactroban ointment daily in the effected nostril to keep the tissues moist.

This morning, I woke up with yet another nosebleed, minor, easily controlled, but unpleasant, inconvenient, and unpredictable.

Doesn't my nasal mucosa know that I have work to do, patients who are counting on me being at my best, family and friends with whom I want to be fully engaged, and important pending lectures and meetings that are the culmination of weeks of work, months of planning, and years of being aware. 

A stuffy nose is no fun and doesn't help my focus, but my real concern is the unpredictability. Will it reoccur when I  walk into an exam room or onto the stage? 

I preach to anyone who will listen that control is an illusion, that life is random, and that it is how we cope with the challenges that is the measure of our mettle. Maybe I need to pay better attention to my own rants. And maybe I should consult my reassuring ENT specialist to see if there is a nasal vessel that needs to be cauterized.


Will my nose be my Waterloo, my Achilles tendon? I doubt it. More likely it will turn out be just a speed bump  rather than a dead end.

So it was particularly timely that today I received these warm wise words of my fellow CLLer.

"Feeling gratitude can be hard in the face and aftermath of super storms or
the diagnosis of a cancer. Frank evidence that life is fragile and that we
are temporary.

But again and again we see how adversity restores our awareness of the
beauty in the world and the value of our relationships to one another. 

Happy Giving Thanks day to all. 

~ Karl"

Patients Against Lymphoma
Patients Helping Patients

Thanks Karl

Growing our Own: Family, Friends, Ibrutinib and Green Tea: Many Reasons to Give Thanks

Our flushing Camellia Sinensis (tea trees)

I have many reasons to celebrate my favorite secular holiday of the year, Thanksgiving. It is a good time to pause with family and friends, perhaps before the festive meal begins, and go around the table and have everyone reflect on all that brings us joy and purpose, all that makes us thankful.

I am blessed with a close and loving and expanding (through marriage and babies) family, amazing friends nearby and on the other side of the world, meaningful and rewarding work, year round access to, and better yet, the ability to grow our own tasty local organic vegan food (and soon make meaningful amounts of my own delicious green tea), the chance to travel and lecture in supposedly pedestrian towns that always turn out to be full of new experiences and friends, teachers and cultural opportunities that expand my vision, and maybe, just maybe, getting my health back, my chance to keep going, to do more, and to grow old.

I am so grateful for the opportunity to be a lab rat. Yes, I complain about the CT scans and all the travel, but honestly because of Clinical Trial NCT01217749 that gave me access to ibrutinib, I am here and well and celebrating with a mind that is not convulsed about my next treatment choice or about a looming unexpected twist in my health. I have a real shot at physical redemption. I am thankful for all the help I got from my case managers and my medical group (St Jude Heritage Medical Group), the entire medical and trial team at OSU, and my family, especially my wife for making this all  happen. 

It is possible to live in gratitude and sickness at once. Some of us with cancer must do this for long chunks of our lives, but it never easy and never the most desirable. Ghandi simply said: It is health that is real wealth and not pieces of gold and silver. While I have posted extensively on living with bad news and sickness, it has always been with an eye on the prize of getting better, of being well.

My next post will discuss the risks and benefits of clinical trials, both from my personal perspective and from what I learned at the Manhattan Beach Lymphoma Research Foundation Meeting a few weeks ago.

But first, I will enjoy a down day of turkey less vegan feasting with my family.