Friday, August 29, 2008

"Come over to the window, my little darling, I'd like to try to read you palm" Leonard Cohen

Courage is the ability to 
cultivate a relationship
with the unknown:
to create a form of friendship
with what lies around
the corner over the horizon--
with those things that have 
not yet fully come into being.

David Whtye (with thanks to Miles)


But that ain't me, babe. The unknown can wait. I am nothing if I am not in your face proactive. Hey, remember I'm the guy who had an elective transplant. I don't plan to let anything "come into being" without a big nudge in what I think is its proper direction. Rather than "cultivate a relationship with the unknown" I plan to shine a blazing and sterilizing light to cleanse every accessible secret. Despite what Batman says, you can't fight darkness with darkness. I need to know as much as I can to fight this mendacious enemy. You can't change the cards you've been dealt, but if you are quick and sly, you can count the cards, and with that knowledge you can beat the house (assuming you don't get caught).

As I mentioned in my last post, my doctor suggested waiting a month or so to stage my disease with a bone marrow biopsy (BMB), CT scans and blood tests.  The master physician, Moses Maimonides asks and I echo: If not now, when? I don't want to wait. I DON'T WANT TO WAIT. Besides the fact I don't want to squander what little gumption I have on waiting to be relieved, or worse case, sorely disappointed, moving now increases my options. 

There are only two possible findings and a thousand possible responses. Either everything is going well, albeit slowly and my patience will continue to challenged for a few years. That is  the best possibility. The worst is the dreaded and relatively rare graft failure.  We would be catching it early if we looked now. There are many reasons for this potential challenge and they all demand different responses. If my old immune system is actively rejecting the graft, my anti-rejection meds need to be upped or changed. If my graft is having a rough time finding a home in my bone marrow, my doc might decide to reduce my meds or use some new options like PTH. Waiting increases the risk of the graft failure being a "fait accompli" (a done deal for the non-francophones), and a true graft failure is a most difficult path to navigate.

So with the advice of Chaya (of CLLtopics.org fame) and others I emailed Dr. Forman about my concerns and suggested we do a bone marrow biopsy (BMB) next week and he said "sure" within 30 minutes of my email. With the short week, it will be Thursday before I am drilled again, but that's still at least three weeks sooner than originally planned.

Doctors like having tests co-ordinated and timed just so. Treatment decisions are often made on the basis of disease staging, and it is hard to stage leukemia if the CT scan is in November, the BMB in September and the flow cytometry to check the blood for clonal disease is in October. Not a tidy picture, so I appreciate Dr. Forman's willingness to live with this messiness, but hey cancer, like life, is messy. Messy is better than too late. He may ask me to repeat the BMB in a month.  I would happily go through BMB weekly if it would help.

As you might imagine, the reading of the slides is critical. This is no pregnancy test, no thumbs up or down, but more like like trying "to read your palm". It's a very clinical getting under the hood and then an artful sussing out of my bloody essence, the actual marrow of my existence may hold within it the secret of my prognosis. The hematopathologists will use their magic stains and dyes to try to divine my future and direct my care. From the micro to the macro.

By all means lets take a peak. I have the rest of my life to "create a form of friendship with what lies around the corner". I am pretty much guaranteed of years that I will be learning about getting along just fine with the great unknown. No need to rush the mysteries or the mystic when there are still answers to be found by digging a bit deeper, even if it hurts. 

Thursday, August 28, 2008

"You never count your money when you're sittin at the table." Kenny Rogers


Now evry gambler knows that the secret to survivin'
Is knowin what to throw away and knowing what to keep.
cause evry hand's a winner and evry hand's a loser,
And the best that you can hope for is to die in your sleep.

Kenny Rogers

My blood tests from last Monday (day 55 after transplant) showed no leukemia in my blood (YEAH) but my engraftment status was unchanged. I am still mostly me and only about 28% donor, which is almost unchanged from last month and while this is very unusual, it is not unprecedented. An eventual albeit painfully slow cure is still my most likely outcome. My doctor does not seemed too worried so I will try not to be.

It is not bad news in any way, it is just not the good news I had hoped for. It means simply more waiting. Now the CT scans and bone marrow biopsy in 30 days are my next signposts. No cancer is no cancer is no cancer, but until my bone marrow is 100% donor, or a few years has gone by, I will have some reason to worry, but not to despair.  The next set of test are to assess my disease status, which is really the crux of the matter. The primary goal of the transplant is not to engraft fully. That is only a means to the end, the end being a cure. If I I remain forever chimeric (mixed donor-host) like others have before me, but my tests show next month  and continue to show that I have and no leukemia anywhere (not just none in the blood, but also none in the bone marrow and nodes), I will have the best of both worlds: a cure without any serious graft versus host disease. That is the holy grail of transplant medicine.

It does mean more waiting without a clear answer.  Probably at least 2 years, unless my engraftment suddenly takes off in the right direction. This is tough for me. But I will keep my best poker face and I be always reminded to "never count your money while you're sittin' at the table. There will be time enough for countin' when the dealin's done

And while the "dealin" is hardly done, thank G-d, I also know that "evry hand's a winner" and I will try to play my very winning hand with finesse and grace.

Wednesday, August 27, 2008

"Let a smile be your umbrella" Music by Sammy Fain and lyrics by Irving Kahal and Francis Wheeler , 1928

A very happy neutrophil from a patient who used to have CML

I am expected to have a similar smile tomorrow.

Monday, August 25, 2008

"Do you believe like I believe Do you believe in magic" The Lovin' Spoonful

PETER MAX

l'll tell you about the magic, and it'll free your soul
But it's like trying to tell a stranger 'bout rock and roll

The Lovin' Spoonful

Like most of you, I am not immune from magically thinking. If I expect positive results, I will get them. If I co-ordinate my 100th post (this is the 96th I think) with the day of the results of my engraftment studies, the news will be good. Even my daily meditation, if I am completely honest, has a magically twist. Though, as Tom Robbins and many others before him have taught you never meditate for purpose, but I am more of a Zen dilettante than Master. Meditation, like prayer, is all about connecting, not petitioning. But maybe, just maybe if I am disciplined and focused enough, and don't miss a day, then good things will come to pass. But just in case, I have the African malachite elephant talisman near my bed (thank you Jeff) and the work of Peter Max with his 60s iconic  "Love" framed scarf staring at me from the wall across my room.  I always wear my green stone necklace symbolizing rebirth carved by the Maori of New Zealand (thank you Rachael and Nick). And to be extra sure, every day at home I pass by a gilded Greek Madonna and a hand painted Buddhist Mandala from Thimphu, Bhutan and a Jewish prayer scroll, and a block printed Orthodox saint and an African healing mask and a Australian aboriginal dreamscape and a native American carvings and their pictures of mazes and Mayan weavings from Guatemala and more and more. Believe that I look under every stone for the magic. Talking about stones, I have painted stones from Australia, petrified wood from Arizona and red sand from the Sahara.I even had a signed hockey puck.

Less you worry, let me reassure you there is nothing new agey about my home. It is far to messy and chaotic to put on any blissed out airs.

More to the point, pictures of family and friends and pets in the hospital kept me connected with the why of my future. Their images magically keep the contact alive.

The magic is real. It is healing in that it reminds me of the bigger picture and the interconnection of us all. As the Police said, "We are spirits in the material world." Sometimes I think it is the other way around (We are material beings in a spiritual world), but that is a whole other subject.

The magic does not replace the science. I take my meds and wear my mask. For G-d sake, I pushed medical science to near its limits in my quest for a cure. The magic just does it work in a different plane. I am glad for it, kenahorah (touch wood).

Sunday, August 24, 2008

"It's time that we began to laugh and cry and cry and laugh about it all again" Leonard Cohen

But you make me forget so very much.
I forget to pray for the angels and then the angels forget to pray for us.


Leonard Cohen

Even a transplant has its weeks of just waiting.  The only trepidation is felt when pathologists and their fancy automated equipment are peering at my blood to tell me what my future might hold, or not. In between it is too easy for me to be lulled to a spiritual sleep and forget so very much.

As any therapist can tell you, the time you get the most movement is the time of crisis. Who hasn't prayed: "Please G-d, if I get out of this one I promise I will never... ( fill in the blank)". Once the crisis is past, the behavior that created it too often returns.Why not? You got away with it, didn't you?

And while I do not consider that my CLL is a direct consequence of any specific behavior I might be able to reverse (wouldn't it be great if it was that simple), the focus and import it has given to every moment needs more effort to be sustained in times when all is calm. Health crises are often about living life on the tight rope. You need your wits about you at all times. No distractions or you fall, hopefully into a safety net. Now my life is less acrobatic and more pedestrian and it it is easier to lose that laser focus. 

Hence my plans to reflect and write. I spend most of my lives in the world between crises, not in them. My goal is to empower those ordinary moments with purpose.

Of course it is not black and white. What is? The fear of the leukemia sneaks or boldly marches into my words casting its dark shadows, demanding to be recognized for what it brings to the table, and what it might have hidden up its sleeve.

Over the next months, this is where I will be living. Moving on, hopefully more aware. To laugh and cry about it all again.

Saturday, August 23, 2008

"How good and pleasant it is that friends live peacefully together" inspired by Psalm 133

Dr Forman cleared me to go to Friday night services, so the first time in months, I got to welcome the Sabbath bride in a congregational setting. 

Despite my mask, and wearing a Fedora over my peach fuzz (I am sure my yamaka would have fallen off, and while some think it is cute to tape a bow to a bald  baby girl's head, no-one thinks I would be cute with a taped down skullcap), I was able to forget myself and transplant for awhile.

Perspective and perception are changed by being part of something bigger and older and much more charitable than I am. It is good for me, because it is not about me.

That is one of the many blessings of religion. Opening up the world. To quote a rabbi from another tradition: The kingdom of heaven is at hand.  At hand. That means right here and now. If I am mindful and heartfelt. Religious services are a time for remembering that everything is connected. Actually that last point you can get from just reading Tom Robbins. Sadly, I had to skip the wine and cakes and socializing after services as my mask makes me an most unwelcomed dinner guest. And I am not allowed to drink.

But life is returning to normal.

Friday, August 22, 2008

"Where have you gone, Joe DiMaggio? Our nation turns its lonely eyes to you" Simon and Garfunkel

Joe DiMaggio

Sometimes your path is marked in the sky 
Sometimes you're forced to fit in between the lines 
Sometimes all that you can do is say no 
Darlin' do not fear what you don't really know 

Brett Dennen

It is clear that I am a hockey fan first and foremost, but baseball is such a better field for analogies. Beyond the immortal "he shoots, he scores", there isn't much of a literary tradition. Baseball on the other hand is rich in language and full of whimsical and adolescent double entendres, but it still is way too slow for me. And for me, now, it seems like I am safely on first base (of engraftment and cure), but it also seems to be taking forever to advance this here runner. Next week lab tests will tell whether I am still on first or I have moved into scoring  position. Maybe, G-d willing, my donor has hit it out of the park, and we are both safely home already. I just haven't got the news. One thing is for sure. I am not dumb or anxious enough to get thrown out trying to steal second. I don't need to. My team has no outs, not even a strike against us. We are just kinda pokey. 

Right now I need you all to root root for me and my donor. This time it's the out of town team, them stem cells from Israel, that we want to come all the way home to my marrow to strike out the clonal intruders.

This word play is getting embarrassing.  But your prayers and good wishes are most appreciated.


Thursday, August 21, 2008

"What's new? Probably I'm boring you" Frank Sinatra

Another clinic day. Labs remain unchanged. Mild anemia, slightly low lymphocytes, and nothing else to report. Dr Forman says I look like a teenager with my pimply rash, but I think it's better and I am not about to use any OTC acne gels. I have almost teenage blood, why not teenage skin.  Gut is good, but I still need a nap most days and I do tire easily. And I have more and more peach fuzz on my scalp.

Dr. Forman also says I am over reading the significance of my dry mouth. He does not think it is mild GVH.  Wrong timing. At least I am over reading my symptoms in a positive direction for a change.

Next Monday I get the BIG tests in addition to the standard happily boring lab. They will look for CLL in my blood and measure my degree of engraftment again. I should have the results next Thursday. This is the critical stuff that shows how much of my blood lines are old me and how much are from my donor.  I am confident of and slightly less neurotic than last time about the expected good news. A positive trend is the heart of the matter. It's  both the journey and the destination.

Soon I will be down to clinic visits once a week. Because my engraftment is so darn slow, my GVH may pop up later, so I may need to return again to more frequent monitoring. Next week's test will be a factor in those decisions.

Been learning from Dr Wendy Harpham's book "Happiness in a Storm". I highly recommend it. Very practical  helpful counsel on how to be a Healthy Survivor (not the TV type survivor, but the real life hero of a catastrophic illness).  

Watch Hotel Rwanda from Netflix.  A very fine movie. A tough inspirational movie against a hellish backdrop. It asks what really counts in life?  It asks the viewers what they would do with their life or their family's life on the line?

"That he not busy being born is busy dying" Bob Dylan

You lose yourself, you reappear
You suddenly find you got nothing to fear
Alone you stand with nobody near
When a trembling distant voice, unclear
Startles your sleeping ears to hear
That somebody thinks
They really found you.


Bob Dylan

Today I have been home from 1  month. Today I am 50 day post transplant, half way to the 100 days, where the restriction are loosened, but I will still need to be careful in the jungle of germs.

Especially so, as by reckoning my 100th day falls on Yom Kippur, the holy day of  atonement (read at-one-ment). A day of fasting. My first day I can eat more freely and I am commanded to fast. Seems fair somehow. A poignant reminder. I can live with that. 

The ancient imagery is the question as to which book do you find your name, the book of life or the book of death. By tradition, the decision is sealed on Yom Kippur. And while that image is a bit literal for me, even in my life and death struggles, it does help me focus on what counts. What is my soul's legacy? What do I keep alive and what I have let die.  This month is my time to do the work of healing those I have hurt, or at least asking for their forgiveness. This is my month to look at what gives meaning to my life. As if cancer wasn't enough of an incentive. As Leonard Cohen, says "Your pain is no credential here".  With or without leukemia (now or soon without, G-d willing), I have my heavy work of redemption ahead of me. This is my month of prayer and preparation.

This is theme that I need to explore more.

Tuesday, August 19, 2008

The Good Old Hockey Game

Oh, the good old hockey game.
It's the best game you can name!
And the best game you can name,
is the good old hockey game!

Stompin' Tom Connors


This post won't mean much if you didn't grow up in the frozen north or at least fall in love with hockey.

Anyway, you sure don't find lyrics like that just anywhere, eh? No siree, boy. You need to be enjoying a beer or a pop between periods of a Kings game, watching the Zamboni (an LA invention) making lazy circles around the rink while you stomp your foot to the "Hockey Song" and with the Kings, you flashback to the Gretzky days because, despite my mindfulness practice, the present with the Kings is often too painful and they are usually out of the game by the third period.

In those old days at the Forum I got to shake hands with Ronald Reagan and meet Mr. Hockey, Gordie Howe. Now at the Staples Center, VIPs are in the suites. Separated from the cheap seats.

Which segues to my good news. Since moving to Socal 27 years ago, I have never missed a season of hockey. Despite how consistently disappointing the Kings have been. Look, if you're thinking how about the Ducks, it took me years to give up being a Habs fan. I don't give up easily. Let me say that again. I don't give up easily! Even during the cancelled season, I saw the Long Beach Ice Dogs play. Hey, it's hockey and good tickets were only $10.00.

But I diverge from my point. This year it looked like my streak might be broken.  Crowds of 18,000 plus are not good places for those with compromised immunity. So what to do.

I wrote the directors of sales for the Kings and told her of my situation. Yes, I shamelessly played the leukemia card. I thought they might sneak me into the press box or some secret spot to view the game. But no, they offered me a seat in one of their suites, far from the maddening crowds. Maybe Luc will show. How sweet it is!

Monday, August 18, 2008

"You got to pay your dues if you wanna sing the blues and you know it don't come easy" Ringo Starr

Another boring visit to the clinic. Lab is stable. Rash is better, but not gone and I am eating consistently without pain for the first time in weeks since I stopped the glucosamine sulfate last week. My knees are worse, but I have options.

But there is one possible hint of news. I have a slightly dry mouth. Could be nothing, but it could be the first hint of Graft versus host (GVH). To be that, there must be a graft. THERE MUST BE A GFAFT. THERE MUST BE A GRAFT. I have never been so very happy about the possible birth of a disease. Without GVH, graft versus tumor (GVT)  is less certain. And without a graft, well I am not going there.

Now, I admit I am reading tea leaves here, but it makes sense. Test to measure the progress of my engraftment will be repeated in 10 days. That will be about 60+ days post transplant.

My next post is some news about going out. Hint: Hockey plays a big role.

I will also soon be asking for your help with some ideas I want to put into words and I will badly need your feedback. More on that soon.


Friday, August 15, 2008

"But I need a break and I want to be a paperback writer" The Beatles



Dear Sir or Madam, will you read my book?
It took me years to write, will you take a look?

The Beatles

To prevent me from going completely crazy stuck at home, I have committed to write a book. There, I have said it. It is out on the public. And since you are reading it on the internet it MUST be true. 

The other truth is that I work best under pressure, so my public pronouncement puts my toes to the fire.  I have started by gathering books on writing and publishing, including rereading Stephen King on writing. If as Woody Allen said, 90% of winning is just showing up, I am in my stretch run. But I know I will need much more than that to make this dream a living reality.  

My research begins with reading some of the great books you have send me or even written. If not for the generosity of Wendy H. and Elaine I might be painting a mural instead with my more gifted children. Some might argue that would be a better use of my weird and constricted talent set. Maybe that too, but later.

I don't think I want to write a self published treatise that no-one will read so I am starting by doing a needs assessment. I have an idea, an idea I think will help a ton of people, but I need to make sure it flies. The book's goal is not just crazy prevention therapy for this homebound doctor, but a practical tool to empower others. But more on that later.

My cure is still numero uno. My labs are rock solid, my rash and gut are getting better, and I know this goal will not only make my world bigger than leukemia and transplant, but it will also offer me a sense of purpose and a chance to give back. That's is the bottom line. That is the best use of this second chance. If I still rest and meditate and answer all my CLL/HSCT emails, this will help cure me. No doubt.

But, before I can give, I will be taking more. I will need your help and will ask for it soon.

Paperback Writer was the first Beatles hit that was not a love song. The Fab Four (I saw them live in 1964) remain fab to this day by their history of constantly expanding their creative vision. G-d willing, me too.

Wednesday, August 13, 2008

"But the big, bad world doesn’t owe you a thing. Get over it. Get over it." The Eagles



THE JOURNEY

One day you finally knew

what you had to do, and began,

though the voices around you

kept shouting

their bad advice--

though the whole house

began to tremble

and you felt the old tug

at your ankles.

"Mend my life!"

each voice cried.

But you didn't stop.

You knew what you had to do,

though the wind pried

with its stiff fingers

at the very foundations,

though their melancholy

was terrible.

It was already late

enough, and a wild night,

and the road full of fallen

branches and stones.

But little by little,

as you left their voices behind,

the stars began to burn

through the sheets of clouds,

and there was a new voice

which you slowly

recognized as your own,

that kept you company

as you strode deeper and deeper

into the world,

determined to do

the only thing you could do--

determined to save

the only life you could save. 

 

Mary Oliver 


I want to thank Glenda for that poem. It really helps.

Let me start by taking several steps down from whatever virtual pedestal some may imagine me posing on. I am not there.

As you who follow my blog more closely could probably tell, I had not been in much of a literary mood for the last few days. 

Maybe the stomach pains are wearing me thin, maybe my fatigue has drained my creative juices, maybe my forced patience with the unusual slowness of the whole engraftment process is throwing off my normal frenetic rhythms.  My wife says I been moping. I know she's right. Not exactly exemplary or inspirational behavior.

I write this not to invite you to my pity party, or worse yet, to have you suggest I get over it, but just to let you know that all of us have darker days. I think it is healthy to be in touch with your pain and carry it forward. As John Lennon said  " Does you no harm to feel your own pain." The important part for me is to carry forward. Don't stop and dwell on the negative. Accept it and move on. Keep on truckin. My family doesn't tolerate stuckness. That's a good thing. 

The other puzzle piece has to do with widening and lengthening my perspective. Then all of this falls into place.

The dogs are back home. The vet and my doc think the risks are tiny. Doesn't stop me from reading half a dozen articles. For example: Such methicillin-resistant S. intermedius (MRSI) strains, although extremely rare, have now been isolated from dogs and the transfer of antibiotic-resistant S. intermedius strains from dogs suffering deep pyoderma to 46% (6/13) of their owners has been demonstrated (Gortel et al., 1999; Kania et al., 2004; Guardabassi et al., 2004 My only contact with them is to hear them bark.

My daughter, her boyfriend and I (masked of course) walked on the beach at sunset. He's never been to the west coast and never seen the sun set over the palm trees along the Pacific. And he has never eaten at In & Out so my daughter is taking him there for a fancy dinner. Double- double I bet. California is a special place. And obviously we are not a family of vegans. Though we can't share meals, we can visit. Not ideal, but workable.  We make it work. That too is a good thing.



Monday, August 11, 2008

"Lazing on a sunny afternoon, In the summertime" The Kinks

Just boring medical stuff to report.

I had my clinic visit today and there is nothing new to report, again. Dr Forman doesn't want to adjust my anti-rejection meds as they are suppressing my old cells from rejecting the graft. He does want me to reduce, but not stop, the Septra DS and the acyclovir. My rash is much much better. Still bad stomach cramps though.

The dog's MRSI is probably not a concern according to her vet, but the boyfriend's cough is a whole other issue according to Dr. Forman. The dogs can come home, but the boyfriend is in the doghouse, metaphorically speaking. Poor Tim.

Got my review on neuropathic pain emailed in late last night, so it is time to move on to other projects. But first lunch, and a nap.


Sunday, August 10, 2008

"And your friends, they treat you like a guest" Jefferson Airplane

My daughter's boyfriend is flying in for a visit from NYC to SoCal. That's great. What's bad is that he had a productive cough and feels achy. He will need to wear a mask in the house, but how does he eat? Out on the patio, I guess.  We will try to make it feel homey. We put up a canopy and a moved a nice table and chairs underneath. I can smile at them from the kitchen doors.

The dogs are being boarded because one of them grew MRSI (Methicillin-resistant Staphylococcus intermedius) on a skin rash. MRSI is not nearly as bad as MRSA (Methicillin-resistant Staphylococcus aureus), and tends to be species specific so it is much less of an issue for us humans, but it still poses a possible risk to someone immunosuppressed.  So both dogs are gone until their cultures are clear. The whole family had nasal swabs to check for colonization with anything unpleasant. Maybe I am over-reacting, but Staph. can be a bad player.

My stomach still grabs me and makes me pay attention to it instead of what I was doing. Still get tired easily and need to nap. Most days I do about 15 minutes on the Nordic track and a light routine with the weights. My rash is better. Here's my secret. I am taking my Septra (Bactrim) DS  1 tab  2 x a day  since this Staph. stuff started with the dogs. I think the extra doses of the antibiotic are helping the rash. I am only supposed to be on it twice a week to prevent pneumocystis and toxoplasmosis. They are both as nasty as they sound, but low doses of meds are all that are need to prevent them. Treatment is a whole other issue. I promise I will tell my doctor at clinic tomorrow about my self-medication.

I have been reviewing a paper for publication on neuropathic pain, which is a welcome diversion, but my comments are due tomorrow, so it was much work over just a few days. 

Patty wanted Citizen Kane and Tea with Mussolini as our first Netflick film. Trouble is that Patty keeps falling asleep. Movies are her great soporific.

Next week 3 of my 4 kids have birthdays.   "Don't you want somebody to love? Don't you need somebody to love?" No problem here, Grace.

Thursday, August 7, 2008

"Take the long way home" Supetramp


But still they lead me back
To the long winding road
You left me standing here
A long long time ago
Dont leave me waiting here
Lead me to your door

The Beatles

Good news. Infact, fantastic news. Engraftment is progressing. Slowly, but surely in the right direction. Go donor, go!

At day 30+ , my neutrophils are 28% donor, my monos 40%,  and my B cells 34% . Those were all 0% donor 2 weeks ago. The T cells have stay roughly stable going from 66% to 62% donor, not a significant move.

What this means is that it will be a long winding road to full engraftment. It also means that I can not rely on any table or article or another's experience to map out my mileposts. I am on my own path. I am movin' and a' groovin' at my own downtempo pace. Those guidelines are not based on my gentle conditioning and my resilient bone marrow. I may be listening to a different drummer, but believe you me, I am steadily marching to the promised land of good health with no CLL. I may take my own sweet time getting there, but the inevitable bumps are much gentler when you going slow. I remember also that there may be less GVH with this mixed chimerism. 

I can live with this. I can live a very long time with this. Did not the tortoise win the race?

Wednesday, August 6, 2008

"He runs, wishing he could fly" CSNY

Now I wish I could write you a melody so plain
That could hold you dear lady from going insane
That could ease you and cool you and cease the pain
Of your useless and pointless knowledge

Bob Dylan

This post is a chance to thank the people who wish they didn't know about this blog. They know of this blog not because they know me, but because they have CLL or because a transplant may be part of their past or future.

Fellow voyageurs, know that my journey will not be the same as yours. Can't be, but maybe we will pass some of the same mileposts, hits some of the same bumps, share some of the same thrills and terrors, and hopefully at the end, reach the same goal of a long and healthy and joyful life.

CLLers have more and more options. Transplants are becoming safer and more predictable. One of my goals in starting this blog was to use the eyes of this doctor turned patient to see details others might miss in the hopes that might help others following in my footsteps. Preparation is the key to being lucky. That and the willingness to act.  Not that being a physician transcends being a dad or a husband or even a patient or a child of the 60s, so I shared those perspectives too. It would be impossible not to. And I guess some of my more off beat or transcendent writings were more accessible than my medical posts for even those up to their eyeballs in the sticky medicalese milieu of leukemia.

First I must thank you all for the support and counsel and experience and jokes and prayers and wonderful books and gifts you have send. Most of you don't even know me, and you have been so generous, and tremendously helpful in keeping me in balance with your comments and emails. I reread many of the messages over and over again to help give me perspective and courage to keep going.

I also want to thank you for being there to read what I write. Because of that, it forced me to focus (but sadly not make succinct) my thoughts, and crystalize them into words that made sense. That helped me sort out where I was at and where I was going. Writing does that. Add to that the knowledge that what you write will be read by 1000s of people and you are  forced you to be honest with yourself. Thank you for that. That is huge.

Moreover, your reading and writing in my blog has given me a chance to feel useful and allowed me to give (which is always better that receiving). It has validated me in a time where my usual pillars of self worth (many others can relate to this): work and competence in the outside world were taken from me. 

Many years ago I spent an afternoon at the home of (Baba) Ram Dass.  He said to me that people learn from us not by what we say, and not by what we do, but by who we are. It is a hard lesson for this hard driving guy, but an essential one. 

Your contact, your presence during this voyage, have allowed me to be someone different than I would ever have been without you there. I am in your debt.

Thank you.

G-d Bless.

Tuesday, August 5, 2008

" I got a name" Jim Croce

I've gotta get a message to you
The Bee Gees

Here is the latest letter I sent to my donor.
Remember that I can't reveal walks on the beach which I do most nights. That would be a geographic clue. I can't talk about this blog. I can't reveal my name. This rabbinic student might be surprised to learn my Hebrew name is Baruch or Blessed. We don't get to chose our families or our names, but I am happy, or should I say blessed with both.

Dear Donor,
I am writing you with another update and a bit of an explanation of the steps involved in my healing process.
I am now 35 days post transplant and am continuing to do well. I am seen at the clinic twice a week for blood tests which remain stable. A second very special test also showed no cancer in my blood 1 month post transplant. This is great news. This week I also get back the 30 day post transplant test that tells me how well your cells are taking over the functions of my bone marrow. It is a critical milestone on the road to the cure, as it is necessary for your cells to engraft and dominate my blood and immune systems to then kill off the leukemia (this is called "graft versus leukemia" or GVL). What i don't want is too much "Graft versus Host" (GVH) and I have been fortunate in that regard. I have had no problems so far. Again, no matter what the tests show, I would do it all again in a heartbeat.
I remain mildly anemic, and still have some issues with skin infections and stomach problems, probably due to my chemotherapy, but overall I am doing much better that expected so soon after transplant. I am remained so blessed.
I am getting out of the house in the evenings to walk with my wife. I have even gone to a few movie matinees. I need to wear a mask and avoid crowds, but it is great to be outdoors.
Thank you again for making all of this possible.
Be well. G-d bless.
Your grateful recipient

Monday, August 4, 2008

"Doctor, doctor, Give me the News" Moon Martin made famous by Robert Palmer

Couched in our indifference,
Like shells upon the shore
You can hear the ocean roar
In the dangling conversation
And the superficial sighs,
Are the borders of our lives.

Simon and Garfunkel
Day 33+ 

Clinic visits are getting more routine. Almost perfunctory. Which I take as a reflection of just how boring a patient I have become. A few pustules here and there, the rare double you up stomach cramp, and many naps make my total clinical story. My labs remain rock solid with no change for weeks. My flow cytometry (fancy blood test to drill deep for clonal B cells) found NO CLL IN MY BLOOD. This is great news. 

Thursday I should have the critical engraftment studies results. This will anything but boring! Should be celebratory. As long as my donor numbers are climbing, all is going as according to plan, and there is no reason not to expect that to be the result. Then these new cells just have to clean out any residual cancer that might be hiding in my nodes and bone marrow. That could take a bit longer. CT scans and bone marrow biopsy measure that march towards cure. Again, it is the trend that counts.

Chronic GVH may yet raise its ugly head. So far it is missing in action. Life remains sweet.

Sunday, August 3, 2008

"Take these broken wings and learn to fly. All your life, you were only waiting for this moment to arise" The Beatles

I want to thank my patients. The cards you sent me cheered up a sterile hospital room. The prayers you sent me (DON'T STOP NOW!) have helped with my healing. The jokes you sent me balanced my somber proclivities. The gifts and books were perfect nudges in the right direction. But mostly the love and good vibes are felt deep in my heart.

I miss you all, even those of you who don't always do what is your best interest (smoke, drink, overeat, no exercise,  too much stress ...... you get the picture). It is never too late, until it is too late, so I expect to have the healthiest patients on the planet when I return. You can do it. Just let the healthy part of you rise to surface and make the decisions. You were only been waiting for this moment to arise.

Enough with the doctor stuff. I will back to that soon enough. For now, my primary mission is still: Physician, heal thyself.

Thank you all and stay in touch through the blog or gmail, even as the posts become less frequent during my lengthy recovery.

G-d bless.

"Keep on the Sunny Side of Life" The Carter Family

Instead of hair, I have pimples on the top of my head. They don't fool anyone, but they do make me taller.

Saturday, August 2, 2008

Life in the hood

Me all dressed up to go out

An' here I sit so patiently
Waiting to find out what price
You have to pay to get out of
Going through all these things twice.


Bob Dylan


Day 31+ Starting my second month. And if that picture doesn't scare you, not much will.

The struggle now more that ever is to still give meaning to each day, let alone each moment.  As I am doing better, I am more and more looking to direct my focus on tasks other than healing. Post CLL and transplant work.

I am also alone more, as I don't need the constant babysitting. Tonight, my family is at another of my son's art opening tonight (see http://killmecomix.com/where he is sharing the spotlight with other comic book artists including Bob Crane, the creator of Batman, Jack Kirby, Rick Griffin, Robert Crumb, and William Stout. Pretty cool! I went to see the show briefly before it opened to avoid the crowds. You can see my costume for the occasion in the picture above. Last night, Will's muse, Laura Breski, had a successful gallery opening for a one woman show. Check out  http://www.laurasstitch.com/index.html

Despite my protest to the contrary,  maybe I am not quite ready to move on. I still have this neurotic pull to exam the underbelly of my disappearing disease.

It is true to say that not nearly all my healing is done. Next week I get the results of the critical engraftment studies. These test look at a small number of blood cells by type and then check their DNA (actually HLA) to see what percent is donor and what is recipient (old me).I have been desperately researching the order of cellular and immunogenic engraftment and reconstitution post transplant, but I appear to have broken the mold and I can't find studies that make sense in my circumstances. Most people lead with neutrophils and when they are above 500 (often day 14 or so) you are considered engrafted, but I was 100% recipient on day 15+ and my ANC was 450 that day. I reached 800  just two days later on day 17+ and never looked back.  Last ANC was a perfectly normal 4,100. I ask myself, whose cells were climbing up the charts? Platelets usually engraft even later, but my nadir was a normal 160,000 on day 2+ and climbed from there. Were these my old platelets or the new ones? You can see how a little bit of knowledge can be crazy making. My docs aren't worried as I blaze this unusually benign path, so why should I?  That is what I am telling myself. And for the most part I am listening.

A bone marrow biopsy on day 50+ will give info about both engraftment and any residual CLL hiding out in the bone marrow. A flow cytometry test should be back this Monday looking for cancer in the blood again. My routine last labs were good except for a low lymphocyte count. Again, Dr. Forman couldn't be less concerned. But donor T cells are lymphocytes. Doesn't that mean something? If my lymphs are falling, are my donor T cells falling too?  Crazy making!
Roof brain chatter!

And as all this hastily built house of cards and worry beads, collapses in the fresh breeze of the clear bright facts next week, I will still have the real issue of an immune system that will be a year or two away from any heavy lifting.

You see what I have to deal with. My mind that is not always steeped in Zen silence, but seems at time more caffeinated and cacophonous, maybe from all that green tea. We all struggle at times to be calm and focused. 

I have some exciting projects that are starting to take form. They will give my mind a different place to play that the world of CLL/transplant. I will share my plans soon. Hint: they involve medicine and writing.

Friday, August 1, 2008

"Good Day Sunshine" The Beatles (my office video)

Here's the video. This took some work to get it to you, so you better like it. (Just kidding). Here's the nerdy details. It is nice to ramble about something besides blood cells.

First, thank you Howard S. He suggested Handbrake which worked great to extract it from its DVD form and made a playable MP4 file. It is a free and simple to use downloadable program (I recommend it), but the file was then too big, so I imported it to IMovie then exported it to my desktop in a tiny form. That shrunk the sucker from 119MB to less than 6mb. It got a bit blurry in the process, but it is all there. I had tried uploading it the public file on my MobileMe account, and writing the same HTML code that I used to link to the prior audio files, but that failed also.

Before any one gets to watch this, I must extend the two biggest thank yous. First to Dr. Luecha and her daughters for putting this together. Thank you, Ann. It means so much to me. And to all my staff. You are the best.

It is still of most interest to my office, and my patients. but on with the show:


                                      video