the day before

Brian's daughter Rachael here. We filled dad's room to capacity today, playing scrabble and guitar. His counts are good and spirts way up. The day before the transplant, we couldn't feel more ready to do this. Go dad go!

Nick and Brian (and Ivy)
Patty in the 6th floor lobby
Dad's 'friend' Ivy watches the sunset.

I'm gonna give you 

till the morning comes 
Till the morning comes, 
till the morning comes. 

I'm only waiting 
till the morning comes 
Till the morning comes, 
till the morning comes

Neil Young

My new immune system, no my full blown new blood system from the bone marrow out is on a plane with a courier to LAX. Arrives at City of Hope tomorrow around 10:00AM. My virile 22 year old donor needed to be hooked up to the IVs and apheresis machinery(see picture above)for only one day to harvest enough cells to give me this shot of redemption. My bet is my savior hails from Israel as he was only found after they search for a donor from a country with a large Jewish population. That narrows it down. Anyway, I won't know, as I already stated for a year, and bless him wherever he's from. I am told repeatedly that the actual transplant is anticlimactic, and for that am I am too thankful for I know they mean is the physical reality is simply a bag of white blood dripping into your arm. I already have 6 bags hanging from my new friend, Ivy (a borrowed name for my IV pole), so what's the big deal. WHAT'S THE BIG DEAL!  I tell you what the big deal is: This bag of stem cells is truth serum for my cancerous B cell clone. This is when they face the folly of the ill chosen path and are gently put down and slowly die out as a superior power takes hold of my marrow. This is no anticlimax. This is a miracle.

For more information on what the  donor goes through see  http://www.ufscc.ufl.edu/Patient/content.aspx?section=ufscc&id=961 

Pumping Iron

Heather here again, checking in on Dad's behalf... with more pictures, of course.

Things seemed pretty good when Dad called yesterday, sleepily asking for dessert - the organic vegan version of Oreos, to be exact. We're still checking out what snacks, exactly, we can bring him, but the fact that he's wanting more to eat can only be good - building up his strength in the next few days.

Dad slept a lot yesterday, on a new combination of anti-nausea drugs. But whatever the combination was it seems to have worked. When I got up there to visit him, there were tons of empty dinner plates, his stomach was full and he was in great spirits.

Dad dictated a short note to his donor, which I typed and sent to an intermediary (because they can't communicate directly for a while, as Dad has explained before on here). He thanked the donor, who is probably going in to give his bone marrow right around now. Amazing.

But there were to be tougher tasks for me than letter writing - my visit was a veritable track meet yesterday! Dad, his friend (see below) and I walked 6 laps around the hospital - that's a mile and a half. Dad (or is it his friend?) gets lots of compliments on the photo mobile, which is strung up so that it comes along wherever friend goes.

(closeup of friend with photos)

The long walk wasn't enough for our circus strongman, though...
The secret to his strength? I think it's this...

The Good Patient

This is Brian's son-in-law Nick reporting here. I know all of you want to know how Brian is doing. Well I have an answer for you:

'nuff said.

Rachael and I visited Brian last night We read out of Bill Bryson's In A Sunburned Country and got lots of good laughs out of Brian, who is turning out to rival his good doctorliness with excellent patientliness. I think about the word 'patient' and I see Brian meditative and relaxed, concentrating his energies for the fight ahead.

Rachael make good nurse...in her country.

Patty reads with zeal, in spite of the difficulty of the mask steaming up her glasses!

We had a really good visit, and will be popping in every day while we are down from Berkeley, though too much visiting can make Brian a bit tired. Why? It's hard not to make him laugh. But seriously, what if you constantly had friends and family dropping in on you when all you were doing was trying to rest or read a good book? It would make me pretty tired too.

Thank you Brian for the opportunity to write. We hope to continue to make your room feel like an extension of home. Maybe I will bring in the digiridoo after all.

"Your pain is no credential here" Leonard Cohen

Little pain, but how about my nausea and vomiting, and profound fatigue,  does that count for anything with you, Mr. Cohen?

Sleepy day.

I've finished all my chemo.

It made me tired and a bit nauseous.

My counts are still good.

More later,

Brian

"my friend"

My dad calls the infusion pump his friend, as it tags along with him everywhere he goes. Connected to the circulatory system, friend provides chemotherapy and a cocktail of drugs to keep him feeling alright.

Calm, collected, nauseous, but happy, describe my dad when I left the hospital this evening. As the intensity of his treatment gradually escalates, he moves forward without anxiety.

-W. Koffman

A Glance Inside the Hospital Room

This is Heather, Brian's younger daughter, checking in on my dad's behalf.  Will (of the exploding brain illustration below) and I are visiting with Dad today, and he asked me to put up an update, because he's very tired.  Besides the tiredness and a little nausea, though, Dad's doing well.  I thought I'd just give a quick update, and a peek into the hospital room, so you can see what things are like for Dad here.

Today Dad commented, "It's funny, I have mustard gas going into me, but I feel mostly ok." Mostly he just seems sleepy right now.  The nurse says, "That's normal."  Dad asked my mom to bring up the "mean" board games, especially the one that involves pushing your opponent's pieces off the board with your pieces.  (Not quite like this girl, but close.)

 Of course we're all sanitized and scrubbed in, as you can see. We're playing mad scientist and trying to keep Dad laughing.

We're also decorating the room a bit, with a photo mobile above Dad's bed, as you can see.

We got good news last night, that we can cook for Dad if we stick to his diet plan and cook the food here so it's piping hot.  So we have a crock pot of vegan chili going in the kitchen - hopefully laughter and home cookin' will keep him feeling good.

The Stranger Song by Leonard Cohen

Like any dealer he was watching for the card

that is so high and wild

he'll never need to deal another

He was just some Joseph looking for a manger

He was just some Joseph looking for a manger.

Leonard (I’m your Man) Cohen

The dealing has begun. In earnest. After fastidiously avoiding chemotherapy for the last 3 years, I am now embracing it, welcoming its immune suppression and bone marrow toxicity. Accepting its DNA damaging rampage and all the possible sequelae. Hit me with your best shot. Fire way.

I know this bravado may not last the night after the Cytoxan.  The Fludarabine was just another anticlimax, which is more good news. Nothing, nada, no immediate ill affects just some fatigue. Been walking in circles around the ward while I can. Soon I get Zofran for nausea, Benadryl for allergic reaction prevention, and IV Ativan to mellow me out (and keep me from tossing my tofu). I am pretty mellow, just not rested, with my IV beeping on and off throughout the night. So soon no more blogging for a hand or two.

As I write this, I am now being dealt the first of many winning hands and I plan to play them all with finesse and grace. And as Woody Allen suggests in two of his better movies (Crimes and Misdemeanors and Match Point), it is more important to be lucky than good. So wish me luck.

I may lose a trick or two, if not a contract or two. And it may look bleak at times but I will win my big bet in the end. This is all about going for the cure.  I hold the aces, and the card that is so high and wild. When I play that card, the TRANSPLANT CARD, I won’t be trumped. When this is all done, I‘ll never need to deal another. I'll be cured. I will be an ambassador from the land of those who had leukemia.You see I have more skin in the game that anyone else. I am going to win. And to quote Arnold Palmer, the more I practice the luckier I get. I have sure practiced in my head and tried to stack these decks in my favorite, marking the cards and reading the signs and I plan to avoid or just handle any runs of bad luck and trouble. Bad luck and trouble  are NOT my only friends, my bluesy readers

Who would have thought that Cohen's playing card analogy, a golfer's wry joke,  and a comic's shoulder shrug of a comment, all from my distant past would shine so brightly on my decisions these day.

 

Choose life Deuteronomy 30:19

I want someone to talk to me like Moses. Come along with common sense and set it straight.

Randi McMatthew (my most favorite songwriter)

The ancient rabbis in MidrashTanhuma (Re'eh 3) share a parable: An old man sat on a highway from which there branched two roads, one full of thorns at the beginning but level at the end, and the other level at the beginning but full of thorns and torturous at the end. So he sat at the fork of the road and cautioned passersby, saying, "Even though the beginning of this road is full of thorns, follow it, for it will turn level in the end.' Whoever sensibly heeded the old man and followed that road did get a bit weary at first, to be sure, but went on in peace and arrived in peace. Those who did not heed the old man set out on the other road and stumbled in the end. So it was with Moses, who explicitly said to Israel, ' I have put before you life and death, blessing and curse. Choose life, that you and your offspring may live.'" 

And although Moses was talking of following the commandments from Sinai, and while to be really honest I would much prefer the Buddhist middle way free of both pain and thorns, I am old enough to know that sometimes what that means is that you must move the pain upfront in order to arrive in peace.

Tomorrow I go into hospital for my months of living most dangerously. Friends have blazed ahead of me with few scratches. One other hangs to life by a slender thread as I enter this post  I go forward because I have chosen life.

With thanks to Rabbi Steven Pik-Nathan

Last Not so Wild Weekend

The only way out is through

Fritz Pearls

Two or Three Tanuki

I tell you having cancer is a full time job, and I am only 9 days away from the curative transplant and less than 2 from admission. Tomorrow is my last day of seeing patients for months.  Last day to point people in the right direction. Last day for months to experience the privilege of that most intimate and tender and fun of careers. Very poignant, but it might help me turn off my doctor gene. Tell me this isn’t doctor stuff. It is just  fastidious patient stuff: I found a mismatch on HLA-typing paperwork for my transplant which would have meant my donor was not a perfect match, but thankfully it was just a typo. I have made a list of all my concerns, and will give them to my admission team.  My wife and I are working with the very helpful dietary staff to make sure I get enough calories and protein on my weird organic vegan diet. No salads or raw foods or restaurants for 100 days. No left overs. No artisan breads. HELP!

But now I got to get back to packing and make sure my IPOD has the songs I want.  I need my books on Zen and Kabbalah. Organic clothing.  And Dr. Bronner’s soap for sure, but no toothbrushes allowed. Pack my photos and computer, and camera, but no room for art. Maybe my wife will bring her guitar and my son his harmonica, and the other son his banjo and my son in law the digeridoo. This could be fun.

My insurance files, my medical files, my financial papers. We updated our will and trust, and set up funeral plans (yeech). I need to make sure all the contacts are lined up.  I need to make sure my kids have all the daddy doctory stuff done for the next few months.

I am starting to feel overwhelmed. Better get back to work. I am looking forward to the hospital for some rest.

Movie Time

"I saw a film today, oh boy"

The Beatles

My staff gifted me with a subscription to Netflix. Do I  have the coolest, most thoughtful staff, or what?

So here's the plan. Please send me your personal choice of what should be the first two movies I rent. Keep it to only two. Thanks. 

Letter to Donor

"I have always depended on the kindness of strangers."

Blanche DuBois

I don't get to know who is saving my life for a year. In fact, I may never get to know. But I can thank him but he mustn't learn where I live or whom I am. No clues about walks on the beach or seeing summer sunset that might place me in one hemisphere or another. Our letters, like those of our soldiers are censored, twice ,and then sent on, stripped of any identifying info. Age, marital status, disease state, and a bit about my work are OK I think. I hope so

Apparently most recipients never thank their donors. What is that all about? I so look forward to meeting him, and learning his story. What makes a 22 year sign up as bone marrow donor and go through the painful and time consuming process? Who is this angel? If he agrees, in a year, we can connect directly without the City of Hope and the Bone Marrow Registry as go betweens. Some country ban any direct contact between donor and recipient ever. Some you must wait a full two years. So waiting a year is not too bad, I guess. I have already used the line from Tom Petty,(Waiting is the hardest part), but I guess that will be a recurrent theme in the transplant world.

So here's my brief opening volley in what I hope will be a long two way conversation over many years:

Dear kind stranger,
I am writing to thank you in advance of my upcoming transplant. I am a 56  family doctor, happily married for 32 years,  and father of 4 who has an incurable cancer, specifically an aggressive form of chronic lymphocytic leukemia (CLL), and without this transplant I might not have the chance to see my children finish college and begin their adult life. I would never meet my grandkids, or grow old with my wife, and I would not get to continue the work I so love, caring for the sick and needy.
I am in your debt.  I will keep you updated as to my progress and would welcome a chance to thank you in person when the time is right.
Thank you
Your grateful recipient

 

PICC a line, any line

I want to live, I want to give

I’ve been a miner for a heart of gold. It’s these expressions I never give

That keeps me searching for a heart of gold

Neil Young

Got the good news late today that since my donor matches my blood type, they don’t need to wash his life giving haematopoetic stem cell. We are both type A Rhesus (Rh) negative. There will be no Rhesus monkey business or battles between Rh & ABO antigens and antibodies in my blood stream. A ( for my Canadian family and friends read "eh") - negative rocks!. Only 6% of the population are that so nearly perfect (but not full of themselves like the 35% who think they are so special with their A+) blood type. Yet I have never been happier with an A minus on a report record. Saves me a lot of tsoriss (read aggravation) as my docs plan how they will send all that I need to live on a direct course to my heart, and from there to where it need to go. Go stem cells, go. Find some cozy corner in my freshly evacuated bone marrow. We've been expecting you. But that is still two weeks away. First you need a secure road in and mine just got simpler, if a foot or two longer. Here's the story.

Because of the match and no need for a fancy catheter, I can get by with a bedside under local (just a lidocaine shot) procedure. When I am admitted, they will be inserting a PICC, a peripherally inserted central catheter that is threaded up my arm and only stops when it gets it gets snuggly with my right atrium. Dylan would call it a tight connection with my heart.

Way easier on my wife and me. My transplant nurse called me today so I got to cancel two clinic appointments tomorrow. And you know what trouble I have being a good patent and a silent doctor, especially when I am with other doctors or nurses. Can I help if my doctor gene is dominant? I need to up-regulate my compliant patient gene. But I digress, for what that phone call meant is that I am not getting an under the collarbone double lumen, better keep this puppy sterile and free of clot Hickman catheter that requires a trip to the OR and constant care. I will already be high maintenance. You see they don’t trust a one -armed doctor to care for his own tubing, so my wife is the most happy, as the PICC is much simpler.

Still no hot tubs or swimming or even baths while it is in place. Don’t worry friends, I can shower, but only with water that been bottled in France and blessed by very well connected leaders from three warring religions. That shouldn’t be hard to find and I can’t be too careful.

And the worst part is I have to give up pumping iron (at least with that one arm). At my present utter dominance over the 15 pound dumbbell, I am only 305 pounds short of the world record for single arm preacher curls held my trainer, Dan Judge. And I was planning to run for governor when this was all over.

Be well. More on  “conditioning” soon. Now that is a strange choice of words.

A Date Certain

Time, time, time, See what's become of me, While I look around all my possibilities, I was so hard to please

Paul Simon

After a third change in conditioning protocol in less than a week, I have a plan and a date. I am glad they are making these changes. Tells me my docs are thinking  hard about the best path to success in my particular situation. I am also glad that they are done, I hope, with changing my schedule. I will be admitted to City of Hope on Jean de Baptiste Day, my birthday, June 24, and will start my chemo the next day. But July 1, Canada Day, is DAY ZERO, the big day, the transplant day. All very auspicious.  All that is left is final donor clearance. And of course, I need to stay well for the next 9 days. It sure looks like this is really going to happen.

Too Smart by Half

Time for a heavier and darker post: My friends Todd and Trisha Mills tried to teach me the meaning of the expression. Maybe I am finally learning.

How to be a Hero

"You could be a hero"

David Bradstreet

Not everyone is as lucky as me. I have a donor. Charlie Fry does not.

Consider giving blood or registering as a donor for him. I will be asking for your definite help with blood and platelets in July and beyond. Mr. Fry is looking for one possible chance in the future which means he needs as many as possible to be tested now to increase his chances of finding that one donor. 

Please read the appeal below for the blood/donor drive at St Jude in Fullerton. Call first the if you plan to donate blood.

This coming Friday, June 13 we are having our first ever Combined Blood
Drive & Bone Marrow Donor Recruitment Drive at St Jude.  In addition to
our ongoing need for whole blood donors, we are seeking individuals who
are willing to register with the National Marrow Donor Program and
become potential bone marrow donors for patients needing a life-saving
bone marrow transplant.

This Bone Marrow Drive is jointly sponsored by the City of Hope, the
NMDP, and the friends and family of Charlie Fry.  Charlie Fry is the
husband of Karen Fry, an RN in our ED department.  Charlie has recently
been diagnosed with leukemia and has been treated both here at St Jude
and now at City of Hope.  He has just completed his third round of
chemotherapy and is waiting for a bone marrow donor match.  Karen has
consented to share Charlie*s story in the hopes that he and others may
find a compatible marrow and receive this potentially life-saving
treatment.  

This is certainly one of those times where the actions of one
individual can have an enormous life-saving impact!  To join the
NMDP*s list of registered donors, you must be between 18-60 years
of age and meet general health requirements.  At the recruitment drive,
a cheek swab will be collected and sent for preliminary HLA-typing.  The
data will be entered into the national marrow registry and if a
potential match is identified now or in the future, you would be
contacted.  More information can be obtained from the City of Hope/NMDP
recruiters who will be on site Friday.

SJMC- American Red Cross Blood Drive            6/13/08    8AM-8PM                 

NMDP-COH Bone Marrow Recruitment Drive    6/13/08   2PM-8PM

Miguel Ramirez, our Red Cross blood recruiter, will be onsite in the
East/Val Mesa Lobby this Wednesday, June 11, to make appointments for
blood donors.  Alternately, you can sign up online at www.givelife.org
<http://www.givelife.org/>, sponsor code: sjmcf, or you can call Miguel
at 714 686 7078.  No appointment is needed for Bone Marrow Registry
signups. 

Won*t you please consider donating a unit of whole blood AND signing
up to become a bone marrow donor?  You never know, you may be the ONE to SAVE SOMEONE*S LIFE!!

Empathetic Doctor

I've looked at life from both sides now

Joni Mitchell

Front and back, eh Joni?  Thanks to a patient who showed me this laugh in one my waiting room magazines, I  have a chance to share some of my feelings of being exposed as both patient and doctor. It's been a tough week which I will share in a later post, so the humor helps.  By the way, if you notice a predominance of 60's Canadian singer songwriters in my quotes, what can I say.  It's ma roots.

Test Day

Test Day

A whirlwind series of tests in a single day.  Advanced medical apparatuses, stranger than their science fiction counterparts,permeate, investigate, and evaluate Brian's inner workings to ensure his strength for the operation.

-W.Koffman