" O Canada, We stand on guard for thee" The Canadian National Anthem by Lavallee and Weir

Dr. Wendy Harpham, author of the must read book for anyone with cancer, Happiness in a Storm, asked me some time ago about the cost of my eternal vigilance. 

Takes me back to morning assemblies singing to the flag in grade school in Toronto. Standing on guard.

We all know that stress leads to release of powerful chemicals in the body. Dr. Hans Seyle, a fellow Montreal native, pioneered this work, and made a strong impression on me in my medical school days. Of particular note is the flood of cortisol, which not only makes us more alert and calms inflammation, but more importantly for our discussion, suppresses our immunity. 

Hey wait a minute! Does that mean just when I need to be on a search and destroy mission that would make the house to house fighting in Iraq look like a lazy afternoon in the parking lot before a 80's Dead concert, my body is betraying me. Could be. Like quantum physics, the act of looking changes the behavior of the observed. Full time fight or flight will wear me out and damper my response to true enemies. Worse than Aesop's shepherd boy crying wolf, I could be putting the safety locks on all my ammunition.

Leaving the biochemical level behind, just think of the psychological toll. Are the mental fatigue, the emotional drainage and the missed moments of joy and celebration too high a price to pay for a possible earlier warning  for an event, namely a relapse that I am counting on not happening? And what difference, if any, would that early warning make ?

It is fair to ask if this is an existential search for the illusion of control by being so darn proactive. Am I stilling my fears by doing something, anything that might help?

Maybe, but if it is stilling my fears, if it is creating some shelter in the storm, albeit a fragile figment that whispers I might have more control than I realize, then why not. If it is empowering and preemptive, I am game.

The vigilance becomes calming. The cortisol level drop. 

At least for me. 

Other are more easily reassured, and a searchlight shining into every corner of their worst fears would just rob them of good sleep.

Like the tight rope walker, it is all about balance.

"And anytime you feel the pain, hey Jude, refrain, Don't carry the world upon your shoulders." The Beatles

I say high, you say low 

You say why, and I say I don't know 

Oh, no 

You say goodbye and I say hello 

Hello, hello 

I don't know why you say goodbye 

I say hello 

The Beatles

It is not normal or healthy for me or most of us to be constantly up and energized and cheery. It is OK for me or anyone to slow down and even stop and rest and collect our thoughts before heading on.

While I do not believe for a moment in the nobility of suffering, I happily wrestle with the darker sides of life. I am your foul weather friend. I have drunk from the deep well of depression and I have slaked my thirst. I have no intention to revisit those mirky waters, but it is not my antidote to be chipper all the time.

I am that not chipper. What I am is grimly determined to succeed. I am paranoid, looking around every corner for what dangers might lurk, so I can be prepared. I believe in the Colin Powell doctrine of overwhelming force. Which means anticipating the ugly challenges I might face and being prepared for the worst. I am positive that I will be tested and that I will prevail. This is not whistling in the dark, it is carrying a flashlight, or staying in a safe house until the storm blows over.

So if I appear down and out for a time, do not despair. I am not despairing. I am really OK. I will let you know if I am not. Promise.

Everybody seems to think I'm lazy 

I don't mind, I think they're crazy 

Running everywhere at such a speed 

Till they find there's no need (there's no need) 

Please, don't spoil my day, I'm miles away 

And after all I'm only sleeping 

More Beatles

"it's getting better all the time" The Beatles (again)

My sore throat isn't gone, but it is better. All the time. The fatigue remains pervasive, hence the scarcity of my posting.

I am conserving energy and sleeping more. 

Only seeing Dr. Forman every 2 weeks now. Patty is not only flushing my central lines daily, but now must do the delicate sterile task of my dressing change on the week that I am not in clinic. She likes to be called doctor, not nurse. My own private doctor. I am one lucky patient.

In two weeks I will get engraftment studies repeated and another look see for leukemia in my blood. My CBC remains stable, with low lymphocytes and a very slowly improving anemia.

Where Dr F. and I disagree is as to when to do the next bone marrow biopsy (BMB). Masochist me would like that painful test in the next month, but Dr. Forman wants to wait for 6 months post transplant which would be New Year's. We both are happy with waiting until then for the repeat CT scan for he same reason: radiation exposure. One CT delivers the same cancer inducing radiation as 400 chest x-rays.

I do want the BMB sooner because we are using my disease state as the deciding factor in any treatment options, especially DLI. So let's watch carefully for any hint of disease, which means checking the bone marrow. The pain is no biggie. If it were to return, which it won't, the bone marrow is a likely front line. Kinda like Alaska, eh Sarah?

"I want to tell you, I feel hung up but I don't know why," The Beatles

Sometimes I wish I knew you well,

Then I could speak my mind and tell you

Maybe you'd understand

The Beatles

It's still hurts to swallow. My voice is still hoarse. I've been much too tired to write or think coherently, so this will be relatively short. With my immunosuppressive medications (tacrolimus and sirolimus) dampening my defences already weakened by CLL and the medications used to treat it, I am slow to recoup. Zithromax, voice rest and gargles have calmed it down, but it still hanging tough.

So I dropped off the grid for a few days. My wife and I carefully avoided the Internet. Instead we got starry eyed in Death Valley under a night sky from our childhood while we ate deep fried prickly pear. It was surprisingly tart and tasty. The desert dessert was a shooting star.

As the picture attests, we also did a bit of rock scrambling in the Red Rocks outside of sin city, Las Vegas. The observant will notice the dressing on my left arm to protect my central line.

Our finale was to have our minds blown by the Beatles inspired show, "Love" in Las Vegas. One of my former patients is the make-up supervisor for Cirque du Soleil who got us the tickets. Thank you, thank you, Kathleen. What nostalgic light hearted fun. The production focused mostly on the Beatles' transcendent or some might say drug induced music which was perfect for Cirque's ethereal reach into colors and shadows.

A splendid time was had by all.

Very healing.

A more disciplined mind might be able to connect with all that is now and healing in the hubbub of home life, but I find I still need to occasionally escape to the austerity of the desert or the joy of a Beatles' tune. They calm my roof brain chatter and my distress. I am lucky indeed that both are so readily accessible. The goal, of course, is to bring that peace inside, so that it is there always, even when I am stuck in traffic on the 405 on the way to the clinic or struggling with news I might not want to hear. Not that I am anticipating anything untoward.

Tomorrow I see Dr. Forman after an absence of two weeks. I hope to post soon on the critical issue for that visit, the frequency of monitoring the disease and engraftment. 

"Hello, It's me" Todd Rundgren

I'm OK, just tired and taking some down time to have some fun and to recoup from a painful throat and neck situation. It's slowly going away. The painful throat, not the the fun.

Much to say. Very soon. All good.

" All things must pass" George Harrison

I'm so tired, my mind is on the blink

The Beatles

I've been exceedingly tired, and suffering from a mild sore throat and pain with swallowing on the right side of throat and neck. It hurts to talk and I am not thinking that clearly.

Sleep helps, but doesn't come easily and I seem to have no energy. To top it off I feel pretty irritable.

So there it is. I hope today's self indulgent post will provide me some cover as I recover from what ever ails me.

This too will pass. It must. I have so much I want to write and  so much I want to do.

A demain ou peut-etre a la semaine prochaine.

See you tomorrow or perhaps next week.

"It's all too much for me to take" The Beatles

It's all too much for me to take

The love that's shining all around here

All the world is birthday cake,

So take a piece but not too much

The Beatles

What a party. The clinical trial was a huge success, proving beyond any doubt the power of tribal celebration in the struggles we all face.

But I need to recoup. Despite 3 out of 10 of my blood cells being from a 22 year old donor, the rest of me is 57 and just a little over 100 days post transplant, so I need my nap. It was a long day.

I promise to post a short recap of the event and the text of my speech soon.

For now, I will just say thank you to all those attended, especially my family, and Wanda for her kind words.

Be well, my friends. 

ZZZZZZZZZZ

"Why don't we celebrate?" Bruce Cockburn

and he screams "why don't we celebrate?
why don't we celebrate?
life can make you sad
come on, let's drive ourselves mad."

Bruce Cockburn

Here's your reminder for the clinical trial AKA party this Saturday at 4PM. If you are coming, please let us know. You are welcome to just show up, but it would help us to have a head count. Hope to see you.

You are invited to a party, art opening and clinical experiment on Oct 18 that will be contributing to major advancements in medical knowledge and general happiness.

The details follow:

Important New Clinical Trial (AKA PARTY and ART OPENING) studying the effects of Celebration and Art on Mind, Body and Spirit

Background

It has long been hypothesized that joy is an attitude best shared. The long term beneficial effects of celebrating will be examined by partying and enjoying original art. Specific research goals including answering the following questions:

Will Brian's 100 + days post transplant complete remission party render him any less neurotic about waiting another 1725 days for an even bigger party to celebrate his official declaration of a cure?

Will the celebration of Robert's birthday make his upcoming curative transplant easier for him and his family?

How many decades of no disease progression will Wanda add to her life by the sharing of her happy birthday with so many celebrants?

Will my son's Ben's donation of 10% of the sales from his Avanti Cafe art opening  to The Lymphoma Research Foundation shorten the time to finding a cure for all with CLL?

What extra blessings will be bestowed on my daughter Rachael and son-in-law Nick as they  fly down from Berkely on the occasion of their 3rd wedding anniversary? My daughter Heather is coming in from New York and my dad from Vancouver. What beneficial effects will they experience?

Will everyone attending with CLL or a transplant get a "contact high" that has a documented  amelioriative effect on their health?

Will the Festival of Booths (Sukkot)  remind us of the joys of the harvest and our ancient wandering roots? 

Inclusion Criteria

A Joyful heart

A willingness to celebrate

Over 14 years old (please no young children)

A love of art would help

You do not have to have had leukemia or a transplant.

Exclusion Criteria THESE ARE SERIOUS

Recent or possible infections or exposure to infections

Recent LIVE  vaccine (the flu shot is OK, but not the nasal spray)

Gifts (Instead, if so moved, give to LRF or St Jude Medical Center or City of Hope) However, food, non-alcoholic drinks, jokes and acoustic musical instruments are welcomed.

Alcohol

Possible Benefits

Meeting new friends and visiting old ones

Sharing in joy

Exposure to great art and vegetarian food at Avanti Cafe

Boosting immunity

Possible risks

Sadness over not being able to hug many of the participants due to lowered immunity

Details

Party will be at a Heller Park (257 E. 16th St) in Costa Mesa 4-6 PM http://www.ci.costa-mesa.ca.us/recreation/parks/heller-map.htm

It's a short walk to Avanti Cafe (259 E.17th St) (a wonderful vegetarian cafe) for the art opening and continuation of the festivities  6-9 PM http://www.avantinatural.com/

CLICK ON POSTER AT TOP

Contact and RSVP Information

Please RSVP by leaving a message at 949 233-4748 or email. It will help us plan and count heads.

If you are lost or need help call Patty at 949 338-1916

Hope to see you as you become a part of the experiment in healing and joy.

"Constant craving has always been" KD Lang

The fundamental things don't change

As time goes by

Herman Hupfeld

The results came in yesterday and the Kings handily beat the Ducks. That was the news I was waiting for wasn't it?

Maybe it is. Maybe it is the attention to the small joys that matter. Catching a bit of the game on the radio on my way home from my son's Ben premiere of his pithy documentary at Art Center. 

Our visit to Art Center was enlightening. Or maybe it it better to say that it got us heated up. I was wrong about the radio waves. The Spitzer orbiting telescope looks at infrared objects in near galaxies. The infrared sees the heat. Before a star is a star that gives off light, it gives off heat. With Spitzer, we see its birth. And we can peer through the dust and clouds into hidden spaces where maybe we catch a glimpse of an exoplanet. Who goes there? The scientists and artists involved in this project were forced by each other to open their minds to other ways of perceiving the universe. Right meets left brain. And my son documented the whole process. 

The film was received with excitement and wonder. Ben has many new friends in the world of science and art. I recommend you check out the show OBSERVE at the Williamson Gallery at Art Center. It's free and mind blowing. Ben's film is part of the exhibit.

Enough  kvelling over my son, whom some of you will meet this Saturday.

My labs? Ah  yes, my labs. Those results had promised to be the tender tea leaves by which to read my future.

I had constructed for my doctor a simple grid of my peripheral blood (PB) engraftment studies expressed in terms of percent donor DNA. Here it is:

July 16 (day 15+) T cells (CD3) 66% All others 0% donor

July 31 (day 30+) T cells (CD3) 62% Granulocytes (CD15)  40% Monos (CD14) 28% B cells (CD19) 34%  PB 32%

Aug 23 (day 54+) T cells (CD3) 64% Granulocytes (CD15)  27% Monos (CD14) 25%

Oct    6  (day 97+) T cells (CD3) 64% Granulocytes (CD15)  32% Monos (CD14) 29% B cells (CD19) 23%  PB 29%

T cells and monos are stable. B cells are down 1/3 (32%), granulocytes are down 20%, and PB is down 9% from day 30+. And really no change since August 23. I don't have B cells numbers for that date.

My false news of 100% donor B cells and with it, the resultant joyous extensions are long gone.

The truth hits at many levels.

First it like being told you won the lottery. And two days later, NOT!

You are not any poorer. You haven't lost any money. You are only back where you started, which in my case is stable mixed chimerism

With no evidence of disease.  And that's as good as it gets.

Dr Forman emailed Dr Khouri at MD Anderson Cancer Center. Issa Khouri did my friend  Ron's transplant  50 days ahead of mine and has extensively published his experience with CLL and HSCT. MDACC has probably treated more CLL with transplants than any place in the world. It is a big  enterprise and Dr. Khouri is their head of transplant.

Khouri concurred with Forman: Do nothing now, and monitor closely. There has never been any disagreement that we need to be most aggressive at any tiny hint of relapse, and for the first time ever the subject of re-transplant came up. But there are many steps ahead of that. Taper meds and DLI come first.

Khouri would also pull the trigger on a DLI if there is a dramatic drop in my donor percentage, which is a touch more aggressive than Forman. That dovetails with my approach.

So for now, nothing is changed. 

The emotional content is ephemeral.  The numbers are steady, and so am I. 

And I must prepare  for that celebratory  " Clinical trial"  next Saturday.

"What can I tell you, my brother, my killer? What can I possibly say?" Leonard Cohen

I guess that I miss you, I guess I forgive you

I'm glad you stood in my way.

Leonard Cohen

I am still waiting for the paper copy of my lab results.  The fax is on its way I have been told, again. I will post an update when it finally arrives.

But that won't stop me from having some fun. After my absolutely necessary nap, of course.

Tonight my wife and I are off to Art Center to see a documentary my son Ben made about Cal Tech and JBL and various artists' take on radio telescope images from deep space. Now that is a total escape to another world.

"The song remains the same" Led Zeppelin

Just gimme the truth

All I want is the truth

John Lennon

Another lab error. Another emotional roller coaster ride. 

Get everything in writing!  My B cells are not 100% donor. Apparently when there is not enough DNA to test, the report defaults to 100% donor. A most strange twist on the wishful thinking paradigm. If you print it, it will be.  They are in actually somewhere in the low 20%. My critical T cells are rock solid at a "steady as she goes" 64.5%, and my granulocytes are stable at 32%

Little change overall, but the fax  copy of the results has not arrived, so take those results as likely to certain as a short bet on the LA Kings winning the Stanley Cup. Not bad news, just more of the same. The song, like the King's  losing ways, remains the same.

More later as I digest this news.

One last tune, as I sashay my way out of this post, this one by James Taylor " Still he knows how to ease down slow. Everything is fine in the end." 

That is something solid I can hold onto to.

"If they lose it's a shame" Jack Norworth

What about now, how 'bout tonight

Baby for once let's don't think twice

Lonestar

I am off to the LA Kings opening home game. A moment full of hope and all possibilities. Well, nearly all possibilities, as my Kings were badly bitten by the Sharks last night. Tonight is payback.

Thanks to Jen and the LA KIngs for helping me out. I will be there with my wife and friends, my binoculars, my surgical mask, and my hand sanitizer.

Win or lose, I will enjoy.

Tomorrow, I get my engraftment results that are critical in determining what steps, if any, are needed to leverage the progress I have made. I won't think about it tonight.

And I won't let any results steal the joy of the upcoming party. 

I promise to be up even if the Kings lose. 

He shoots, he scores. Life is good.

"I check my luck in the mirror" Bruce Springsteen

How many roads must a man walk down

Before they call him a man

Bob Dylan

Tracey ask for a line from the "boss", so I thought I"d use it as a way to glide into how do we measure time and progress.

Today is day 101. My risk of TRM (transplant related mortality) is falling faster than real estate prices in California.  I still have about a 1/10 chance of not seeing my rebirthday, the next Canada Day or July 1. But I had that same risk spread over the only first 3 months as I do now over the next 9. Anyway, statistics are for groups. They do not predict individual outcomes. Survival, and its opposite and not percentage. They are 100%  I have no doubts about my future. I plan to live to 95. 

So what do you see when you study the computer snapped picture taken yesterday, the day I survived into triple digits. It was taken the evening, when I broke my Yom Kippur fast, to send to my dad whose only internet access is when someone visits him with their laptop. Unlike in the past, I think you would all agree that my smile isn't forced, even it was held a moment too long. Why should it be? I'm here. Like Abraham, I'm here.  The clinician in you sees no jaundice or pallor. Close examination reveals no thinned skin with the tiny blood vessels that creep to the surface from long term steroids. I've been off steroids for over a year.

My cheeks aren't sunken, my eyes aren't bloody, and hair ain't still gone. 

I check my luck in the mirror.  All leukemia and lymphoma patients will tell you how they check the mirror.  Any new swelling or changes? And the shower. Showers can be scary places for those of us who have had cancer in their life. The soapy skin gives up its buried secrets of subcutaneous nodes. We don't want any nasty surprises jumping  up on us when we shower.

But where is the true measure of who I am?  Not a visual inspection or even a careful palpation. Soon those fears will be fragmented memories.

The answer is found in the question: Why I been given this extended contract? That's the operative word. Contract! It implies mutual obligations. 

Soon, so soon I can smell it, I will not be constantly lurching forward like some cancer equivalent of the Jacob Marley. The leukemia will not be peering back at me in the mirror. It is losing its power already. I think it's gone. Of course, I am still patiently waiting for my engraftment results, so the path is not fully clear yet.  Monday we learn. Then only 57 more months to go, before I let down my guard.

But change must also come from within. 

The prophet, Micah cuts to the bone and makes it clear what the contract demands.

Do justice, Love  mercy, Walk humbly with G-d

How well I do on those three is my true measure.

Hi Dad and Phyll

Friends are visiting my dad and Phyll in White Rock, BC and they, unlike my father, are computer savvy and may be lurking on my blog any moment now. 

That is big news!

So this is just a quick shout out to them:

I LOVE YOU GUYS

"Slip sliding away, slip sliding away. You know the nearer your destination, the more you slip sliding away" Simon and Garfunkel

Whoah God only knows, God makes his plan

The informations unavailable to the mortal man

We're workin our jobs, collect our pay

Believe were gliding down the highway, when in fact we're slip sliding away

Simon and Garfunkel

The work of redemption and giving thanks is endless. Maybe that is because the rewards are eternal. Though I have my doubts.

Just as I was finishing my morbidly delayed goal of writing all my thank you notes, I was blessed with 3 gifts in the mail today. More to be thankful for. The nearer your destination...

I am one lucky guy, but I had one new mysterious challenge, that was solved as I was preparing this post.

"Hope begins in the Dark" by Jamie Reno arrived today from Vital Options. A free gift of the stories of 50 lymphoma Survivors. Thank you Vital Options and GSK. Click on the link and you can have the book too.

Poems arrived from the technophobic retired English teacher, Dan Weinstock whom I met at services at Surf City Synagogue. I am hoping he will let me publish some of them on my blog. I look forward to many hours lost in your poetic reverie. You think writing prose is tough?  Try poetry. Poetry writing ain't for wimps. Thank you Dan.

And 5 CDs  of the prayers and teachings of Reb Zalman and Rabbi Debra Orenstein arrived. Reb Zalman is transcendent. You can get a sense of the man from the must read  book "The Jew in the Lotus" I highly recommend it for anyone searching their tradition for meaning.  And Rabbi Debra will be a newer voice for me. Very exciting. 

Here's the now solved mystery. There was no gift card in the envelope with the CDs, but through just the slightest amount of detective work, I was able to find out the name of my benefactor, my friend and mentor, Rabbi Haim Beliak. Thank you Haim, you are a mensch!

I pray that we all, no matter how diligently we try, always have a few thank you notes that we should be writing. Slip, sliding away. 

And I pray that we always have unseen movies, unread books and unheard CDs.

Need to get ready for Yom Kippur. See you on the far side of my fast, as I will not be using my computer until tomorrow evening. Kind of funny that one day without a computer seems like a sacrifice. What have I become?

"Little things I should have said and done I just never took the time You were always on my mind. "Thompson, James, Christopher

If I, if I have been unkind,

I hope that you can just let it go by.

If I, if I have been untrue

I hope you know it was never to you.

Leonard Cohen

As I approach the magical  100th day post transplant,I am exploring old themes because they are rich with meaning. 

So many of you have reached out to me with cards and gifts.  I revisit them often. They touch me deeply. I am sure they help with my healing.

I should have said it before to each of you individually but this is the best  I can do. I am shouting it out here and now.

Thank you and G-d bless

"One more cup of coffee for the road" Bob Dylan

Sometimes the light's all shining on me
Other times I can barely see
Lately it occurs to me
What a long strange trip it's been

The Grateful Dead

This is strictly a medical post for the transplant crowd. Others are welcome to dip their spoons into the alphabet soup of engraftment seen in a reduced intensity stem cell transplant.

I face one more hurdle, before I can rest for a spell.  The HLA testing was redrawn today to see who is making my T cells. Hopefully this time my 14 tubes of blood will yield enough DNA to give the answer. The right answer, which is my donor. Go donor, go. The other blood lines are of much less import.

Here's the deal. After transplant, T cells hang around for a long time from that big bag dripped into my PICC line on July 1. That is why the long living T cell counts are higher than the other cell types earlier on because the transplanted monos and neutrophils die off pretty quickly.  The fact that my B cells are all donor 90 days out suggests these are mostly freshly minted B cells. My donor stem cells has taken up residence in the nooks and crannies of my marrow and are making at least some if not all of my blood now.  That's very good indeed. T cells DO NOT determine what the source of these B cells or neuts or monos will be. They just give the orders to them as to what is friend and what is foe. That is why they are so darn important. That is why T cell depleted transplants have more relapses in leukemia, but less GVH.

The T cell count does not always follow lock step with the other cells lines, but it's the boss so why should it. T cells originate in the bone marrow like all blood cells, but only become mature T cells in the thymus. 

If the T cells are 100% donor, then the chances of relapse are diminished. If they are steady, that  can be just fine too. If they are dropping, then that might or might not spell trouble. Here Dr. Forman and I do not agree.

Dr. Forman said my good news on my B cells was flirting. I think he mean it was tease. Let's hope the tease was just the preparation for the final act of consummation.

So one last hurtle. I am planning on going all the way, then I will rest.

"Tell the teacher I'm surfin, surfin USA" The Beach Boys

He-he-he-he-he-he

WIPE OUT

The Surfaris

Today my wife and I went to the Surf Museum in Huntington Beach for an amazing afternoon of surf drumming and guitars. Imagine 4 drum kits set up front with the guitar and bass in the background. Way in the background. Be assured that the rhythmic pounding will heal all that ails you.

Until I can hit the waves again, this is as close to that raw feeling I am going to get.

I am telling you this, precisely because it has nothing to with leukemia or a transplant. I had my mask in my pocket and surf music in my brain.  Not leukemia. Not transplant. Now I admit that 4 frenetic surf drummers playing the mother of all " Wipe Out"s  will drive just about everything out of your head.  It was all gone. 

My wife played one of the  volunteer Wipe Out solos. How cool is that!

Cowabunga, dudes.

"When somebody loves you, it's no good unless they love you all the way" Cahn/van Heusen

(Stay) Just a little bit longer now

Please, please, please, please, please

Maurice Williams (Preformed by the Four Seasons)

It looks like I am going all the way. More reason to celebrate with you on Oct 18 (See prior party post). I cried when I got the following email. I am getting so close to be able to glide for awhile. But I have to wait just a little bit longer, another 10 days.

The letter from Dr. Forman needs some translation. STR means Short Tandem Repeats. It is a way of fingerprinting DNA used in solving crimes. Think OJ and president Clinton. In my case it is employed to test whether my blood cells are from my donor or "residual", in other words, from the old me. On my last test in August I was only 34% donor B cells. They are are now 100% donor.Ya Hoo. Remember too that my cancer was in my old "residual" B cells and those cells are getting hard to find. This does not mean for certain that I am fully engrafted, let alone cured, but since B cells get their marching orders from T cells, it does suggest that the donor army is in firm control of the hematopoietic landscape and that is great news and bodes well. 

Dear Brian,

 

The STR analysis came back as showing 100% donor B cells but they did not have enough to DNA to do everything.  So I will add another STR analysis for the lab for Monday so they can do the T, monocytes, and granulocytes, so we can look at everything.  Make sure they draw it while you are at the lab on Monday!

 

Steve

I am so lucky and so grateful for my good fortune.

"It's just the way things change now, like the shoreline and the sea" Leonard Cohen

When one forgets the essence of one’s own soul, when one distracts one’s mind from attending to the substantive content of one’s own inner life, everything becomes confused and uncertain. The primary role of penitence, which at once sheds light on the darkened zone, is for one to return to oneself, to the root of one’s soul. Then one will at once return to God, the Soul of all souls. 

(Avraham Isaac Kook, The Lights of Penitence)

My wife and I walked on the beach yesterday at sunset. From the pier we tossed our crumbs into the waves. It's called Tashlish, the traditional symbolic gesture for ridding our sins as we celebrate the birthday of the the world or Rosh Hashanah.

True change is hard. I wish I was better at it. The ritual is prodding me to do the necessary work.

I did notice one small change. When I got my lab back today, I saw my tacrolimus and sirolimus levels (my immunosuppressive drugs) were quite low, and I remained OK. I figure Dr. Forman will address that issue when he has the engraftment results next week. It's all part of the same puzzle that is my new life. I am even slightly less neurotic about the wait for those critical numbers. Still neurotic, just less so, and more optimistic then ever that 100% of my donor cells will finally take their rightful place at the head of my immune table.

Talking immunity, my level of immunoglobulin IGG, an important class of antibodies, is falling. This is not a surprise as my last IVIG (a pooled IV blood product that replaces only IGG) was in June, pre-transplant. My other two antibody classes that were measured, IGA and IGM remain below the radar screen. My immunity will be lax for some time. That is in the nature of CLL: antibodies that are painfully slow to recover, even in remission. My defences remain porous.

Has anybody seen my antibodies?

I am surprised by my own calm about this.  These are really side issues. I am still fighting for my life, and my soul.

"Yes, We're going to a party, party" The Beatles

You are all invited to a party, art opening and experiment on Oct 18 that will be contributing to major advancements in medical knowledge and general happiness.

The details are explained as follows:

Important New Clinical Trial (AKA PARTY and ART OPENING) studying the effects of Celebration and Art on Mind, Body and Spirit

Background

It has long been hypothesized that joy is an attitude best shared. The long term beneficial effects of celebrating will be examined by partying and enjoying original art. Specific research goals including answering the following questions:

Will Brian's 100 + days post transplant complete remission party render him any less neurotic about waiting another 1725 days for an even bigger party  to celebrate his official declaration of a cure?

Will the celebration of Robert's birthday make his upcoming curative transplant easier for him and his family?

How many decades of no disease progression will Wanda add to her life by the sharing of her happy birthday with so many celebrants?

Will my son's Ben's donation of 10% of the sales from his Avanti Cafe art opening  to The Lymphoma Research Foundation shorten the time to finding a cure for all with CLL?

What extra blessings will be bestowed on my daughter Rachael and son-in-law Nick as they  fly down from Berkeley on the occasion of their 3rd wedding anniversary? My daughter Heather is coming in from New York and my dad from Vancouver. What beneficial effects will they experience?

Will everyone attending with CLL or a transplant get a "contact high" that will induce an  amelioriative effect on their health?

Will the Festival of Booths (Sukkot)  remind us of the joys of the harvest and our ancient wandering roots? 

Inclusion Criteria

A Joyful heart

A willingness to celebrate

Over 14 years old (please no young children)

A love of art would help

You do not have to have had leukemia or a transplant.

Exclusion Criteria THESE ARE SERIOUS

Recent or possible infections or exposure to infections

Recent LIVE  vaccine (the flu shot is OK, but not the nasal spray)

Gifts (Instead, if so moved, give to LRF or St Jude Medical Center or City of Hope) However, food, non-alcoholic drinks, jokes and acoustic musical instruments are welcomed.

Alcohol

Possible Benefits

Meeting new friends and visiting old ones

Sharing in joy

Exposure to great art and vegetarian food at Avanti Cafe

Boosting immunity with laughter and joy

Possible risks

Sadness over not being able to hug many of the participants due to lowered immunity

Time and Place

Party will be at a Heller Park (257 E. 16th St) in Costa Mesa 4-6 PM http://www.ci.costa-mesa.ca.us/recreation/parks/heller-map.htm

It's a short walk to Avanti Cafe (259 E.17th St) (a wonderful vegetarian cafe) for the art opening and continuation of the festivities  6-9 PM http://www.avantinatural.com/

CLICK ON THE POSTER BELOW (it's way cool)

Contact and RSVP Information

Please RSVP by leaving a message at 949 233-4748 or email BkoffmanMD@gmail.com. It will help us plan and count heads.

If you are lost or need help call Patty at 949 338-1916

Hope to see you as you become a part of the experiment in healing and joy.