The best laid plans

Please understand, I never had a secret chart to get me to the heart of this or any other matter

Leonard Cohen

 

I am waiting for the results of my bone marrow biopsy. I should have known by now how well behaved my monotonous monoclonal marrow monsters have been since we last checked in on them in January. I passed my pulmonary and cardiac test this week. My dentist has given the green light (don’t underestimate the power of an ultrasonic toothbrush and regular flossing and tongue scraping too). Except for my routine labs, the CT scans next week and the results on the biopsy are the last hurdles on my side for on schedule launch of my new immune system. The donor is being tested this week to see if he is cleared to give, but he’s 22 and has been screened for most things that we might encounter as young adults once already.

So I am marching forward with the conviction that this is going forward as scheduled.

Besides bulking up with my diet, I have been working out with Dan Judge. Dan is the big guy in the picture. He’s great. Knows just when to push and when to be gentle with me. I was never much into getting big. I spend my post hockey years working on my comic timing and my spiritual connection with the eternal, not on looking good or being fit in the present. Boring stuff I told myself but I must admit this bodybuilding is fun and it does make a visible difference. Much of the process of transplant is hard on your fitness and your muscles especially, so hitting day Zero, as fit and in my case, big, as possible, seems to be a smart idea. In fact, at least for me, I have tried to look at my psychological, spiritual and physical health. I have spoken with my attorney and my rabbi and my counselor and my accountant and even a funeral planner. I want to hit this transplant with no concerns or worries. And so I work out, and meditate, and eat organic and try to make sure the finances and insurances are lined up, make plans for the care of my patients while I'm indisposed, and mostly just enjoy life.

So as Leonard says, I have no secret charts, just a sense that for any of us fighting the good fight, and that I believe is most of us, we want to hit the ground as strong and ready as possible.

Be or get well. Stay or get strong.

Dr K

Vegan diet

We are stardust Billion year old carbon We are golden Caught in the devils bargain And we've got to get ourselves Back to the garden

Joni Mitchell

Many of you know that I am vegan. That means I hail from the planet VEGA (via Canada). As I vegan I eat only raw stardust and that only from the freshest black, white, yellow or red dwarfs.

When I  travel, I bend the rules and eat deep fried planetary rings or boiled micro asteroids. You  gotta eat. Seriously, I eat no meat, dairy or eggs and try to eat organic as much as possible. I love raw cuisine, but lost too much weight when I was strictly raw, so I now eat mostly cooked vegies.  With the transplant looming, I am trying to bulk up with more vegan desserts and lots of seeds and fruits and nuts.  We belong to a co-op and get a fresh basket of local organic produces weekly and plan our meals around what the farm the farm picked that morning. Hey I live in SoCal. I am working with a trainer and using dumbbells at home to "bulk up" And I drink 3 to 4 pots  (not cups) of organic green Japanese tea daily. By the way, as my nurse says because it passes through you so quickly, , you really don't buy tea, you rent it, We have a juicer and the drinks are wild and colorful and we have a high power blender that could be used in a pinch to power a small car. Recently I have added some small wild fish to my diet to supplement protein and with a nod to the 60s, I am adding organic hemp powder to my juices. And I love raw organic vegan chocolates. And you thought being a vegan would be dull. Au contraire!

After transplant, nothing raw for a long time. The low neutrophil diet is safe, but sad cuisine. Think school cafeteria food .

Anyway, I am hungry, so more later. My kholrabi is calling.

Traits of a Warrior

Ed Schmotzer is not only an AML survivor and a post transplant warrior, but a generous, sage, and energetic man who wants to share his positive approach to what every challenges you face especially transplants. He called me after I sought support from others ahead of me in the haematopoetic stem cell transplant curve.  Thank you, Ed.

Traits of a Warrior!

1.    Concentrates on the Course of Action – Focused – No Distractions – Adrenaline Flows – Doesn’t let up for even One Second – Never looks back; Only Forward – Bound Emotionally and Intellectually to the Battle - Intense Self Discipline to Prepare and Execute the Course of Action – Knows what has to be done.

2.    Knows the Enemy – Studies the Enemy – How the Enemy will Attack – The Enemy’s Strengths and Where the Enemy is Vulnerable – How to Counter the Blows the Enemy will Inevitably Throw – Knows the Battle will Not Be Easy; the Warrior may even Get Hurt.

3.    Trains for the Fight – Gets Ready for Combat – Mentally and Physically – A Lean, Mean, Fighting Machine – The Best Conditioned will have the Stamina for the Battle.

4.    He Knows Beyond a Shadow of a Doubt that He is Going to Survive – He KNOWS He is Going to be Victorious – He has Total Confidence – There is No Hesitation when It’s Time to Fight – Odds and Statistics are Irrelevant – He has Implicit Trust in His Leader.  A Good Warrior is a Very Poor Loser.  He Hates to Lose at Anything.  “Winning isn’t Everything; It’s the Only Thing!”

5.    No One Can Fight His Fight for Him – That would be Someone Else’s Fight – He has Support Beside Him and Behind Him, but Ultimately, It’s His Fight!  It’s Difficult, if not Impossible, to Fight while Running Away.  You have to Fight “Head On”.

6.    If He Gets Knocked Down, He Gets Right Back Up and Into the Fight – He Takes Setbacks in Stride.

7.    He Doesn’t Hold Anything Back when the Fight is On – Every Ounce of His Strength is poured into The Attack – There is No Event, Occasion, or Happening More Important than This.

8.    He’s Proud To Be A Warrior – He Wears the Scars of Battle With Pride – He Holds the Banner of Victory High!

So, DIG IN YOUR HEELS!  YOU ARE IN A BATTLE!

Be A Warrior!  Be an “Army of One”

Ed Schmotzer, AML Leukemia Survivor

REVISED and SIMPLER Practical Issues: Staying in touch by email

Whom is it that I address?

Who takes down what I confess?

Leonard Cohen

This blog plans to heats up in about a month and become more graphic as the rest of my family, especially my sons start adding content. SO if you want to be advised when we added a note or a video or an illustration or a photo or maybe even a song, then you now have three choices: the easiest way is to put your email address in the subscribe box that is the second thing below  my profile on the right.  Click sign up and you will get an email asking to confirm that you want my blog updates. Do as they direct and you will get the update notifications by email.  Some spam filters are putting  the automated  email that asks you to confirm in your junk folder, so check for it there if you don't receive the letter. The second way is that subscribe thing above that box called ATOM. Clicked on it and follow the instructions (if any). The last option is that you can click on the RSS at the far right on the web address line and follow the instructions (if any). All these are automated and they all work, so any one will save me much effort and ensure you are being updated.  For those of you who have already emailed a request, I will send you an update email, or you can simply choose the first of the options and that will remove the risk of me messing up. Thanks. I am just learning this blogging and HTML stuff and am proud of adding the widget.

FYI, my donor is scheduled for his check up on June 1 and and both he and I should get the green light about a week later. The plan is to harvest his cells on June 30 and transplant me the next day.

Letter to my Patients (sent to some 5,200 I have been lucky to know)

Dear Patients,

I am writing to ask for your patience and understanding, and also for your support and prayers.I will be taking several months off from my medical practice starting in June in order to have a bone marrow transplant for my chronic lymphocytic leukemia (CLL) which was originally diagnosed almost three years ago. This procedure offers a real chance for a cure for an otherwise incurable cancer, but it does mean I will soon have the immune system of a newborn and so will be vulnerable to infections for several months after the procedure. That translates into not being able to practice the career I have so loved for the last 30 years until I have sufficiently recovered. 

I will miss you all deeply, but I will be back for sure and look forward to the privilege of being part of your healthcare team in the not too distant future. In my absence, all the doctors and providers of the St. Jude Heritage Medical Group in Diamond Bar will be available and will have access to all your electronic medical records. These are my trusted partners and you will be well cared for.

The next weeks will be very busy for me and I ask for your understanding. The shoe is on the other foot, and I have many pre-transplant doctors’ appointments to be scheduled and rescheduled. For this doctor, having leukemia has been a crash course in compassion as I have learned much about being a patient. In order to accommodate appointments with as many of you as possible before my absence, please consider a group visit. Check on your refills and lab follow-ups and do request those as soon as possible.

I am also asking for your personal help. Please contact my medical assistant and right arm, Jennie Taylor who will be keeping a list of those of you who would be kind enough to volunteer to donate blood (A-) or platelets (all blood types are OK) as I certainly will need transfusions. What I can’t use will be used gratefully by others. There is a desperate need for blood products of all types so please use this letter as a reminder to consider donating. I am posting a blog, parts of which soon will be in the form of a comic book written with my son. There l have a place for comments and emails so we can stay in contact. Prayers and messages and email are all welcome. You can find my blog at: http://bkoffman.blogspot.com

I am blessed to have such a fine group of doctors and other professionals through St Jude and elsewhere caring for me. I am blessed to have such a wonderful group of patients that I have been able to care for. I look forward to many more years together.

Be well. God bless.

Brian Koffman MDCM

The BMA in May 2008

My son and soon to be co-creator of our graphic novel, Will and his muse, Laura, and me and Henri Moore at the Baltimore Museum of Art. Life is sweet.

The whole is greater than the parts.  While Moore's reclining figure is split in three, she is one.

Not the last figure we will be seeing put back together.

The waiting is the hardest part

The waiting is the hardest part

Every day you see one more card
You take it on faith, you take it to the heart
The waiting is the hardest part

Tom Petty and the Heartbreakers

My transplant is scheduled for July 1, Canada Day, the old school Dominion Day from my first home and native land.  Before then,  in the exact 30 days before day 0, I will have had every inch of me inspected: my teeth, my heart, my lungs, my urine and stool, my venous blood and my arterial blood (ouch) and my bone marrow (ouch again). I will be x-rayed and echoed, stress tested, CT scanned, pulmonary functioned and biopsied. And my donor, bless him where ever he might be, will go through a similar life scan. And if we both get the green light,  someone will fly to him to pick up my new life blood and hand deliver it to the City of Hope.  On that day, a day timed perfectly so that this graft, a new organ really, might migrate into my marrow that has been opened up to receive, emptied of all its genetic history with a massive exposure to the toxic child of mustard gas (mephalan). As with the Israelites who left Egypt (the narrow place), this dying off of all those that have a memory of slavery, human or cellular, will allow the start of a new story.

But now I must wait.