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.

Canaries in a Cat Scan

I have already talked with all my kids, so here's the news, again in the form of a gently edited letter to protect the identity of the recipient.

Details, commentary, the  expert opinions, and the path ahead will follow soon

Dear Friend,

Well, I am not waiting for clarity or good news or even a sense of direction to write again.

My bone marrow biopsy was perfect. Not only am I cancer free down to the last drop, but back to normal. My blood tests are all boring (boring is good in my line of work).

Then the CT scan had to gunk up the works. One of the privileges of being a doc, is that I get to see the images as the radiologist (he like being call rad) studies the shadows made by my insides. Like the shamans reading chicken entrails, but hopefully with a better batting average

At first it looked OK, then there were two suspicious nodes in my gut, but not so definite that a second quick scan might add more info, which showed that it was actually only a knuckle of bowel and all is well, except that with a third look and a second pair of eyes they really are nodes after all. What a roller coaster ride in real time. The biggest node is only 2.2 cm x 1.7 cm. Barely pathological, but clearly growing. Just two 2 stupid nodes are bigger now than on the images from Dec 1 last year. The glands in the armpits, chest, pelvis, groin, and even all the other mesenteric nodes are stable or shrinking.

But the rain's gotta start at some corner. Those two mesenteric nodes are my canaries in a coal mine.

I have left the land of remission and entered the land of relapse. Or at least my toes are through the door. There is still a sliver of a chance that these aren't yellow canaries but actually are red herrings. Pray for me that I am already cured, but my will is being tested.

I am still coming to terms with this all means. Certainly more chapters in my book.

Hopefully the leukemia gurus will have answers, but I think I already know what they will say. Redo the transplant, with a bigger hammer. Bummer. I feel like a bad schoolboy: Brian, you will do this over and over again until you get it right.

Well, at least I have choices and the energy to pursue them.  And with a clean marrow, much time to weight my options.

Some good news:

My son Will was juried into the very competitive Laguna Festival of Arts. At 20 he may be the youngest artist ever accepted.

Our two ton sculpture finally made it into our front yard after years in storage. The house feels more grounded. Now yours isn’t the only house with a playful entrance.

Patty and I are tickled about scoring tickets to hear Leonard Cohen in San Diego. He sure delivers his songs on the NPR podcast from New York. Check out http://www.npr.org/templates/story/story.php?storyId=101034642

Be well.

Brian

Letter to a friend at the beginning of February, 2009

I wrote this before I had any recent results. It is minimally edited to protect the recipient's identity.

Captures a moment in time. Seems like prehistoric time.

Here goes:

Dear Friend,

Seems my pattern is to wait too long to write you in the hopes of sending mail filled with only great news.

No such luck. I have both good and bad results.

Truth be told, my life remains full of hairpin turns, made in the fog, on icy roads, while listening to Leonard Cohen. But I am still on the road.

Let me catch you up.

As you may recall, the hematopoietic stem cell (bone marrow) transplant went off without a hitch on Canada Day, July 1, 2008. Unbelievably, only three weeks later I was sent home. No transfusions. No IV feedings. Except for a few storms of nausea and vomiting, bone deep fatigue, and the loss of my hair, it was scary how easy it was.

Turns out too easy. My dysfunctional “host” immune system that nearly killed me a few times in 2007-2008, somehow managed, despite the onslaught of big time chemo, to fight on well enough to “protect“ me from what was to be my life saving foreign graft. It turns out that with all my vegan ways and meditation and weight training, I was too damn healthy, and rejected the bloody stem cell transplant that was meant to cure me.

Which means I will likely have to do the whole tortuous process again. This time with a bigger hammer (read stronger chemo, read more time crawling on the floor and hugging the toilet). Without a newly installed immune system, the risk of relapse is very high.

Or maybe not. The great news is that on my last tests, I was 100% cancer free. Occasionally those who reject the transplant, also reject the cancer. Like throwing out the baby with the bathwater. I may be cured and just not know it.

A CT scan and bone marrow biopsy later this month will determine if I am heading for the redo, or back to work.

My “host” immunity may have thwarted my plans for a peaceful transition of power with the goal of my new donor’s cells taking up residence in my executive branch and running the show, but it is not yet strong enough for me to return to the world of sick people that was my workplace as a family doctor. I am hoping to return to the office after the flu season if I get my doctors' OK.

In the meantime, to fill my time with meaning, I have been writing. My blog http://bkoffman.blogspot.com has had about 55,000 hits and Purdue University has proposed a study using my site. My readers have encouraged me to make a book from what I have learned and written about. It feels right.

The book will be a narrative non-fiction with the working title: The Difficult Patient.The subtitle for now is: How a Contrarian Attitude Saved My Life and Might Save Yours.

It is an anti-inspirational comic tale about how to demand and get a recut and reshuffle if you don’t like the hand you’ve been dealt. It celebrates brokenness and chides forbearance.

For me writing is demanding. I know dry science writing, but this is a entering a whole new world. In a universe full of agents and publishers, I am arming myself for the upcoming battles. Fighting for one’s art is nice work compared to fighting for one’s life.

Patty and I have not traveled much due to my health, but I am going to NYC in March to lecture, maybe meet some agents, and get some expert opinions on what to do next about my cancer and my book. My mask came off in November.

In April, I am scheduled to do stand up comedy to introduce the keynote speaker at an International Leukemia/Lymphoma Conference in Niagara Falls, Canada.

My son, Will, the artist, is back from four months in Italy and is busy with his fine art and illustration. My son, Ben, is showing his latest film about the orbiting Spitzer infra-red telescope at a local film festival, my daughter, Heather in NYC is writing the bar, and my oldest daughter and son-law, Rachael and Nick, who you met, are traveling around the world on a scholarship studying the architecture of American military bases and how they effect the surrounding communities. Very sweet. They’re in Hawaii this week.

I will send you a shorter note when I get my CT and biopsy results and map out my next move.

Be well. Stay in touch.

 

Brian