Monday, June 30, 2008
Till the morning comes,
till the morning comes.
I'm only waiting
till the morning comes
Till the morning comes,
till the morning comes
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.
The long walk wasn't enough for our circus strongman, though...
The secret to his strength? I think it's this...
Sunday, June 29, 2008
The Good Patient
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
Friday, June 27, 2008
Thursday, June 26, 2008
A Glance Inside the Hospital Room
Wednesday, June 25, 2008
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.
Monday, June 23, 2008
Choose life Deuteronomy 30:19
Sunday, June 22, 2008
Last Not so Wild Weekend
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.
Friday, June 20, 2008
Wednesday, June 18, 2008
Letter to Donor
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.
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
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.
Monday, June 16, 2008
A Date Certain
Thursday, June 12, 2008
Too Smart by Half
Monday, June 9, 2008
How to be a Hero
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
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
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
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!!