"Good Day Sunshine" The Beatles

This is mainly for my staff.

Thank you. I miss you like crazy. I miss work.

My partners are the greatest too. It is such a comfort to know how well my patients are cared for while I am gone. I am humbled by your extra efforts and fully grateful.

The quilt and now the video. They both touch me deeply and makes my heart smile. I am so lucky.

I want to post the video so all at the office can see (others are welcome too, but it is mostly of interest to those with whom I work), but I am not sure how to get from the DVD to my post. There is an empty folder called Audio_TS and a folder called Video_TS which contains 2 each of .BUP, .IFO, and .VOB files. I have copied the DVD to my computer, but that was no help.

It plays fine in my computer and DVD player, but I just don't know how to get it up on the web. Any suggestions?

If you don't get to see it, let me give you a brief synopsis.

The writing and the acting is strong.  The director has cut to the heart of the matter. This is a story that leaves you on the edge of your seat, dabbing a tear from your eye. Without ruining it for you, the plot consists of everyone waving at the camera and wishing me well. I love it. Academy award stuff.

"And she brings you tea and oranges" Leonard Cohen

Day 28+ 

There is less and less to report. Which is good.

Eating more and more home cooked vegan food with less and less pain. Drinking juice from blood oranges from Laura's (my son, Will's girlfriend) garden. But first, we must soak the oranges in a dilute bleach mix and then rinses them and drink it immediately. Blood oranges are believed my some in the alternative medicine world to help the (drum roll please) the blood.

Still drinking 3 pots of organic green tea a day. 

Rash might be getting better.

I started myself on Culturelle, the good bacteria in yoghurt, and omega 3 (anti-inflammatory) to reduce my risk of GVH. I am washing  bald head to toe with the antiseptic Hibiclens every 2 or 3 days.

I got my differential back from yesterday's clinic at CoH. My lymphs have fallen to 500 (below normal) and my neutrophils have climbed to over 7,000.

Remember that less than 2 weeks ago none of my neutrophils were donor, but my lymphs were mostly donor T cells. So I am trying to read the T leaves as to what this means in terms of my engraftment.  I will have the answer in a week or so.

Today's earthquake had no effect on anything but my nerves, but my office was near the epicenter and I have not been able to reach them. I have not heard of any injuries or structural damage, but I hardly needed a fresh reminder of the fragility of life.

"76 trombones lead the big parade" The Music Man

Day 27+

Only medical stuff today.

Today was a clinic  day, so Patty and I were up at 5 AM for the drive to the hospital. The good news is my appointment was for lab was 8:15, and clinic 9:15 and I was on the road home by 9:30. So much more pleasant than the last visit.

Lab remains solid with Hb 11.1 WBC 10.2 (diff pending) and platelets 512,000. That is still above normal but a tumble from my high of 667,000.

Dr. Forman thinks my rash may be a low grade staph infection (not MRSA)  and just wants to treat it with antibacterial soap and ointments.  No antibiotics. Maybe it's my hair follicles. Seems so unfair, infection of the follicles without the hair. My stomach issues have mostly resolved. Still very tired.

It turns out the engraftment studies on Day 15+ did show 66% donor T cells, but 0% donor neutrophils or monos. While that is not good news,  it not critical as the T cells lead the immune engraftment parade that determines the makeup of the rest of the marrow. I will be retested next clinic visit and I expect the results to be strongly marching in the right direction.

"I want to hide awhile, behind your smile" Donovan

Nowhere to go

Nothing to say

You won't hear my voice

Till it's far, far away

Leonard Cohen and Anjani

Tired and sore. Nothing new to report. More tomorrow after the clinic visit. Need to rest. 

"The way you wear your hat" George and Ira Gershwin

Day 25+  One quarter through the first 100 days.

Stomach was better with smaller meals. Tender rash is spreading. Not sure what it is.

Received a Schwartz's cap that says Montreal on the back. For the unaware, Schwartz's, Montreal's Hebrew Delicatessen, is home of the best smoked meat in the world. Hey, I was not always a vegan and I certainly ate everything I could when I was in medical school at McGill.

I also received a beautiful and very special prayer quilt from Dan and Martha Thompson and their church, Inland Hills Church in Chino, Ca. Every knot represents a prayer. It has a musical theme, but there are some surprises including hockey and Canadian symbols. So thoughtful. So prayerful. Thank you so much. I have the best patients. 

This is the second quilt I have received. The first one was amazing and made me cry. It was from my office staff, and included wonderful pictures of them all with a travel theme highlighting some of my worldly adventures.  I am so blessed. I have the best staff. 

I will post pictures of the quilts.

The work and love and hopes and prayers and sweet memories that went into these quilting projects are certainly part of my healing equation. I have no doubt.

Not only am I am prayed for, but my bald head (and shaved face, yes that hair was falling out, too) is protected from the sun with a cap advertising a deli. Gives new meaning to the term, meathead.

"Temporary Man" by Howard Forman (the Groove Kings)

Buddhist thought on the temporary nature of all things, done with a latin beat, from my Montreal friend, Howard Forman. You met him playing the blues guitar on an earlier post. This time it's just the music. The singer is Irene Marc, the band is the Groove Kings.

The song is perfect. Dr Forman (no relation to the guitar player, but isn't it sweet they have the same last name) was emailed by CoH and I am seeing him before his clinic starts on Monday morning.  My ANC in 4,100. My troubles were temporary.

Now I must just remember these stomach cramps and tender rashes are also transitory.

"So tired, tired of waiting"" Ray Davies

I ain't saying you treated me unkind

You could have done better but I don't mind

You just kinda waste my precious time

                                                  Bob Dylan

Saw the same PA at the clinic today who discharged me late from the hospital on Monday.  I was there for over 5 hours and spent 15 minutes with the PA 15 minutes in lab and 15 minutes for a dressing change.

She first asked me about my infusion. I didn't have an infusion. She later explained my stomach upset was getting used to food after TPN (IV feeding). I didn't get TPN. The one thing she didn't do was read my chart. I know she is trying, but I suspect she's badly overworked as she is covering for 2 providers who are out of town. She doesn't know me or my status and it showed.  It was not a confidence inspiring first outpatient follow-up. I was very nice. Ask my wife.

Maybe because of the slow process (the domino effect of my late scheduled appointment with her perhaps because of my late check out on Monday, again because of her, and then a mix up in the registration), I could not even get an appointment with my doctor as needed next Monday, so I seeing a very kind and competent NP who I am quite sure knows and remembers me from my 4 weeks inpatient. However, this is a potentially dangerous pattern which I need to break. I am coming up on a high risk period for CMV re-activation, GVH, and the critical assessment of my engraftment status. This is not the stuff a mid-level should be handling, plus because of the confusion with some of my lab, my neurotic side wants the reassurance that comes with decades of experience. I need to know what angst is wasted and what is well spent. This doctor as patient needs to see a doctor. 

I admit it feels fine to whine, but it really doesn't matter much, because I am well. Very well. My preliminary lab report was very good. HG 11.3 WBC 7.1 No nodes to be felt. Despite my stomach issues, my weight is stable. No fevers. No diarrhea. No mouth sores. My stomach pain is getting better today and rash is fading for the most part.

The RN did a great and sterile job in changing the dressing and in teaching my wife the technique. The lab staff is amazing.

I will conclude by letting Bob Dylan finish the lines I borrowed from him to started this post:

"But don't think twice, it's all right"

"Life goes on within and without you" The Beatles (specifically George Harrison)

The birds of a feather all the phonies and all of the fakes

While the dealers they get together

And they decide who gets the breaks

And who's going to be in the gallery

Dire Straits

My son's post and invite just prior to this is important to me as I want life to go on as normally as possible for my family while I am healing. His art is amazing and Evocal is a fun small gallery/boutique. Hope some of you come. For sure, life goes on within and without you. It must. In Will Durant's "The Story of Philosophy", I am on the section on Arthur Schopenhauer and "The World as Will and Representation". That pessimistic philosopher certainly saw it that way, almost 200 years ago. While I don't buy his gloomy outlook, I do buy into his sense of something beyond the phenomena of our individuality.

Stomach is pretty bad again. I am switching to 5 small meals a day, which is more work for my wife, as leftovers are really not on the low bacteria diet.

Rash is getting worst. Itchy.

I go to the clinic tomorrow. 

It is all tolerable, small potatoes, but I don't feel like writing much.

To all my dad's blogging friends:

Will here, Brian's youngest son.  I would love if you all could meet me for brunch and casual talk about art at Evocal, a hip gallery space where I am currently displaying my bleach art, oil paintings, and screen-printed posters and backpatches.  Evocal will remind you of a 1960's coffeehouse, a 70's surf hang out, and a contemporary trendy boutique - who would've thought you'd find such a cool space right off the freeway in Costa Mesa?  You can park across the street in the Mexican market parking lot.

See you there.

"We are saying goodbye at the innermost door" Anjani and Leonard Cohen A Mystic Adventure

I have lived on the lip of insanity,

wanting to know reasons knocking on a door.

It opens.

I've been knocking from the inside!

RUMI

Goodbye to the hospital and the sick life. 

Today is my first full day home. Last night was rough and I did not get to sleep until 7 in the morning due to stomach issues, but that is not my focus.

My focus is being back with my family (but not my pets), without masks or gloves indoor. Pure joy!

My focus is walking through my own house with my art (much of it done by my children) and my familiar furniture and Spanish mission architecture, but not the landscape architecture.

My focus is finding the proper balance of rest and exercise.

My focus is on being thrilled with every second of this increased freedom.

My focus is on rejoicing in careful hand washing and food preparations. G-d is right there in the details.

My focus is on enjoying routines of taking my meds and other daily preventive tasks. Who knew my  squeamish wife would make such a great nurse flushing my PICC lines.

My focus is on not getting sick, continuing to engraft, wiping out this leukemia, and living to 95.

My focus is on what good work I am going to do in the next 5 months or more until I can return to direct patient care.

The 800 pound gorilla of CLL (for those not in the CLL or ex CLL community, the standard image of CLL is of a dragon which might make me St George, and I am uncomfortable with that image) is taking its toys and its clones and leaving my life. It's about time. It is all about time.

I begin to focus on the essential, the ineffable. I increasingly stare wide eyed at this moment and beyond. What do I do with this gift, this second chance? The CLL and the transplant have opened doors of perspective. I stop looking at the doorway. What's inside? What's outside?

"How can I be sure in a world that's constantly changin?" The Young Rascal

Below is part of the email I received from Dr Forman. What a mensch!  It explains my confusion about my engraftment status, specifically whether my neutrophils (CD15 is a marker for neutrophils) are from my donor or my old marrow. If I am not careful, this kind of stuff can drive me crazy. Pretty good news in all and I didn't have to wait too long. I will sleep better tonight. In fact  i will sleep great in my own bed.

There is a take away message from all this.  Get copies of your lab. Check the accuracy of your prescriptions. The PA forget two of my anti rejection drugs. It could have been a disaster if I hadn't checked. As it was it only added hours of waiting for her to correct  the mistake. But these are minor bumps in the road. I am home  and in the process of healing.

I checked in the lab and there is a discrepancy in the CD15 reports .The report I have shows 100% donor on the neutrophil, but the report that you got says 100% recipient. I will have  to track this down tomorrow.  The most important number however is the T cells and that is showing early engraftment as it is these cells that actually mediate engraftment of the stem cells that lead to neutrophils and monocytes, and we will be repeating all of this on day +30 anyway. Nevertheless, I will call the lab as they may have to rerun the sample if there is any DNA left.

Still waiting

3:25 PM  

I have had about 25 minutes contact time with the discharge staff in the last 8 and 1/2 hours.

Still at the hospital waiting for my prescriptions and PICC supplies and masks and final instructions.

What's more of a concern is there may have been a mistake in what I was told about my engraftment report. That could be a big deal. Hate to leave you hanging, but that's my situation. I just don't have all the information.

Reminds of the old joke about the Jewish Telegram: "Start worrying. Details to follow."

Again, I have promised myself not to borrow trouble, so I will just try to wait out the answer calmly with positive expectations.

"I love to take photographs" Paul Simon

The vote wasn't even close, but the shave was.

"I am already gone"

The Eagles

Waiting again, this time for my discharge visits, instructions, and blessings, before I can vamoose. They are still counting my every calories (why I don't know), but I can urinate in the toilet for the first time in almost a month.  

Counts remain good, unchanged from yesterday. 

"What a difference a day makes" Maria Grever & Stanley Adams

Wishing I was gone

Going home

Simon and Garfunkel

Neutrophils (ANC) have doubled in just one day to 2200.  All other tests are stable. This is excellent news. I have now have had an ANC greater than 500 for 3 days in a row, a sign of engraftment and a sign it is safe to go home, tomorrow.

I will be driven back to the clinic only twice a week. I was expecting daily checks. I was expecting a very short leash of only a few hundred yards, specifically to the on campus cute and sterile cottages. Maybe I get to go home because of my benign course and my surfeit of red blood cells and platelets. Not likely to need an urgent transfusion or develop a rapidly progressing infection. I am probably safe 45 minutes away from City of Hope when it is not rush hour. It could be double or triple that at the wrong time of day or if there's a sigalert so I will simply plan on not getting sick any time to be safe.

It does seem strange that I go from blood tests twice a day on Monday to twice a week on Tuesday. No more antibiotics. No more antifungals. Am I really that different in 24 hours? Of course not. It is just hospitals run by routines and outpatient clinics run by different routines. Will I miss nightly bleary eyed perusals of lab results drawn at midnight and put on my night stand at 4:00 AM? I am an info junkie, especially when it comes to my blood, but I think I can wean off twice daily check ins. Thank G-d for the PICC line, which I get to bring home and my wife gets to care for,

Tomorrow will be a busy day of meetings with I don't know who yet: pharmacy staff, the dietician, the PICC nurse, the discharge planner, the clinic staff? They told me it may be late in the day before I get home, which is fine with my exhausted wife who is arranging last minute cleaning of our furnace filters and ducts. Can't go home without all my ducts lined up. (SORRY!)

My friend Joe, a fellow CLLer has loaned me an air purifier. The contents of my office and desk have been dusted or put in large plastic bins with labels such as "junk from top left drawer". Like a crime scene, certain non sterile parts of the house, including the kitchen will be cordoned off from my perambulations for the time being. The pets are off limits. No plants. Curtains are gone in many rooms to be cleaned. No junk or dust bunnies anywhere. I am not sure I will recognize the place

But it's home. sweet home.

I want to thank you for letting me be myself again. Sly and the Family Stone

Thanks to Dr Forman, Barb and all staff and caregivers at City of Hope.

It 's been great, but it's been enough already.  3 days short of a full month in hospital and I am ready to split. Let me out of here!

Let me completely honest here I have spent too much time in the hospital in my career as a doctor, but is much better to be the doc than the patient, much better to give rather than take the orders, and much better to go home at night.

To show me how to ride the ultimate wave Beach Boys or HOW I SAVED MY LIFE

It's just the way things change now

Like the shoreline and the sea

Leonard Cohen

This post will be of most interest to CLLers or anyone considering a hematopoeitic stem cell ( bone marrow) transplant (HSCT). There is some repetition of information from prior post and some jargon that has been explained in the past.  If you want to skip the medical story, please read the last two paragraphs.

This is a summary of what has been accomplished so far and what is yet to unfold. It is about how I have changed and what changes are coming as I say a final good bye to CLL.

Let me set this up by reviewing the conditioning. Mine was RIC (reduced intensity conditioning) and is usually non-myloablative. This kinder, gentler regime does not wipe out my whole bone marrow and with it, hopefully every last cancer cell. What it does instead is make a little space in the bone marrow for the new graft and beat up my immune system so I don't reject these donor cells. It is a much less miserable and risky procedure than the more intense myloablative transplant. It relies on the graft to do the heavy lifting to find and destroy the "foreign"  cancer cells. My specific protocol used Fludarabine 30/M2 x 3 days. cytoxan 750/M2 x 3 days, Rituxan 375/M2 x 1 day  and then Rituxan 1000/M2 on day 1+. 8+. and 15+. It is specific for CLL.

My first task was not to die from an infection when I was most vulnerable. Mission complete. Now that my neutrophils are >1000, I am past the hurtle of neutropenic sepsis, but I am still at risk for infections from bacteria and molds that usually don't cause trouble for someone with a normal immune system (opportunistic infections).

My next goal was to engraft. Done. Over the next several weeks to several months, my bone marrow will be increasingly taken over by my donor cells. It may never reach 100%. Dr. Forman, anticipating my catastrophizing, told me that a final mixed chimerism where I remain part old and part new is associated with less graft versus host and not less disease control. The doctor in me wants to see the published research behind that reassurance, but the point is moot as I will end up where I end up. The gentle conditioning may be associated with a slower engraftment. I can live with that.

Next bullet to dodge is acute graft versus host (GVH): rashes, liver disease, diarrhea, mouth sores and so on. It can kill you and in fact after infection is the second leading cause of death in HSCT. It usually would have started by now. The highest risk is the first 30 days and I am already day 18+ so I am looking pretty good. By definition any GVH before day 100 is considered acute.

The penultimate issue is chronic GVH. This is tricky. All the studies suggest that those with some chronic GVH (but not acute GVH) have a lower relapse rate of their leukemia. The highest cancer relapse rate is when the donor is an identical twin where there is almost no GVH. Makes sense as GVH and GVL (graft versus leukemia) are often, but not always dance partners. So maybe you want some mild GVH (some dry skin would be OK) to let you that know your graft is being vigilant in its search and destroy mission. Dr. Forman is not convinced of the necessity of the connection and feels my protocol may give me the best of both worlds. Again, I say show me the data. But GVL without GVH is the holy grail of transplant world.

Which brings me to the ultimate issue, the raison d'etre  for all this awesome transplant adventure:  TO BE CURED. My blood is already cleaned up (and there was a trace of cancer in my blood when I was admitted), but that is the easiest target. The bone marrow and the nodes will take longer to be purged. This is dependent on my graft establishing itself before my CLL can rise again from the near dead.  Relapse is the third leading cause of death.  

I am confident that is not in my future for three cool calm reasons: my disease burden was low at the time of transplant, it is demonstrably lower now, and my graft is already taking off. 

But maybe more important is that I am riding a wave of love and support and prayers from so many, and I am taking it all the way to the shore of joy and health. Thank you. Thank you. Thank you. I couldn't do it alone.

Hey, more than 60 posts and finally use a surfing analogy. Feels right. Tubular in fact. So far the rides been smooth and glassy. I am so blessed. Surfing USA.

This could be the start of something good Lionel Hampton

Three more pieces of good news:

1: Going home on Monday July 21. My wife and children and Marina (the backbone of our family for two decades) are scaring away any dirt  or dust or mold or germ within a 5 mile radius. I am much mellower here. They are going crazy with my early discharge. Originally the plan was that I would be in the cottages on the CoH campus for a month or two. But because I have done so well, especially not needing any  blood products, I don't need stay at any halfway house, and get to go straight home.

2: ANC (neutrophils) climbed past the 1000 mark today, so move the infection danger risk arrow another notch down.

3: My hair loss has stopped. A bit late. I need your advice. Do I shave or keep the wispy look?

More later.

Get back to where you once belonged The Beatles

Unhooked

I'm tired of the war.

I want the kind of life I had before.

Leonard Cohen

It looks like I might get my wish, at least the kind of life that involves sleeping in my own bed.

More good news.

My ANC (absolute neutrophil count) was 800 today, nearly double yesterday's result. And we know they are all donor cells,  starting their work as my fledgling immune system. Reminds me of those signs at national parks warning of fire danger. My arrow is no longer in the highest danger slice of the pie. It is now pointing to the much less scary high danger zone for infections. So instead of avoiding matches, I avoid sushi ... and salads and most fresh fruits and vegetables and restaurants and leftovers and crowds and plants and pets and colds and kids and vaccines and dust and dander and reptiles and goldfish and housecleaning. I wash my hands before and after every human activity. I share nothing with anyone, and everything is cleaned all the time, but I must leave the room or the house (properly masked of course) when it is being done.

And I get unhooked from IVY during the day if I promise to drink and drink and drink. IVY, my constant companion, gets to dance alone. But she joins me every night next to my bed, that faithful skinny friend.

My Hg dropped to 10.1,  its lowest level yet, so I need to be vigilant. And my headache is back, so I will write more later.

It's Good News Week by Hedgehoppers Anonymous (this time without the irony)

DNA results (revised)  drawn on day 14+

Neutrophils 100% donor

Monocytes 100% old me

T cells 66% donor

Translation: I am beginning to engraft!

The immunophenotyping results (apparently it wasn't lost)

No clonal or malignant B cells 

Translation: No CLL ( leukemia) found in my blood stream.

NUFF SAID.

Tell me, tell me, tell me the answer The Beatles

You gotta pays your dues

If you want to sing the blues

And you know it don't come easy

Ringo Starr

The news about my engraftment status may come as soon as tomorrow. It is so critical. Without the new DNA usurping my old marrow, this has been a tale, to quote Macbeth, full of sound and fury, signifying nothing. With a good engraftment, I am that much closer to a cure.

The lab lost my immunophenotyping, so I won't know my CLL status for awhile.

This is a difficult patch, this waiting, again.

My routine labs showed little change today. Home next week still looks likely. Don't feel much like writing today. Need to meditate and focus. 

Your messages, emails, cards, and prayers are so valuable and helpful. I treasure and value them all, and do not discount their role in my recovery. Thank you again.

G-d bless.

The Best is Yet to Come Old Blue Eyes whose album cover boast Frank Sinatra

Trading tea and tender thoughts

Randi McMatthew (the best songwriter in the whole world)

I am about to start my last dose of Rituxan 1000/M2 which is OK, but the pre- medication of Benadryl 50 IV snows me.

So quickly some excellent news

Neutrophils were 452 today, which shows up as .5 or 500 on the upward averaging computer print out. I am so full of joy and hope.  Statistically,  500 mark is breached. 

Remember the old: There are three kinds of lies going from bad to worst: Lies, damn lies, and statistics.

Not out of the woods, but maybe the trees are thinning (like my hair), and I think I hear some children's voices in the distant. 

Dr Forman said I might go home next week, not to the cottages but home! I am overwhelmed. So is my wife who has a million projects uncompleted to clean up the place for an immuno cripple like me.

I don't want to get too excited, but my Zen middle way is failing me today.

The remaining concerns and they are giant ones, are the results of my engraftment studies and my immunophenotyping.

The first test compares DNA to see how many of my newly hatched neutrophils (and every other blood component separately and individually) are of my 57 year old tainted stock or of the clean 22 year old Israeli donor. The second measures how much CLL is still lurking in my blood stream.

This is just the first of many such test to assess my progress towards cure, and will not be perfect for sure. All I can hope is a positive sign that my graft has found its new home a warm and comforting place to raise children, and my leukemia cells have read the signs and has started loading up its nasty clones and heading out of Dodge.

This is huge and scary.  I so want it to be more good news. I so believe it will be. That is the whole purpose of this awesome adventure.

Stay with me. 

Benadryl 50 is being pushed into my PICC. 

Gotta go. Fading  F A S  T

Old friends Simon and Garfunkel

But all my words come back to me 

In shades of mediocrity 

Like emptiness in harmony 

I need someone to comfort me

Homeward bound
I wish I was
Homeward bound
Home, where my thoughts escaping
Home, where my musics playing
Home, where my love lies waiting

Silently for me
Silently for me
Silently for me

S and G

Day 14+ ( 86 or so to go)

Just a vanilla update today.

A better day. PICC line pain was improved when I stopped weighting lifting with the left arm that has the plastic tubing running from the skin into the deep vein and on to the armpit, before it stops just above the heart in the superior vena cava, The radiologist says he's seen the catheters more inches just with respiration, so pumping iron may not be the smartest thing. DAHH. Hey, I am a slow learner, and I have so little recreation to look forward to.

My rash is mostly gone and my nose has that dry itchy healing feeling. I did not realize how tender and itchy my hair roots on my scalp would be as my hair continues to drop at alarming rates into the most annoying places.

My neutrophils are frustratingly the same as yesterday. I remind myself that it is the trend that counts, not a single value and my trend is good. The other labs show little change which also is good.

Tonight they are drawing a fancy DNA test that will tell what percent of my various blood components are from my donor and how much is the old me. In other words it measures my degree of engraftment. I will be so happy when I learn to what extend I am being reborn in a few days. This is early to do this test and that too is good. That is my next milestone and it's a big one.

I have now been in hospital for 3 weeks. And I am bored. My fatigue stops me from reading too much or any serious writing. TV is still stupid, even when you are in hospital. In hospital, the simplest tasks take forever, so there is much down time. To brush my teeth, I need to disinfect my hands, then disconnect my IVY, curl up her cords, check all the tubing, and only then can I amble the few feet to the sink.  I then reverse the whole process on the way back. You get the idea. 

My best friend Todd visited and that was wonderful.  It would be great to sit on a park bench like in the tune by S&G, but being with my old friend  was the real prize. Family and friends are what it all about.

Bad to the Bone George Thorogood and also CLL Canada

Day 13+ (87 to go and then some)

This one is only medical, but I will try to avoid jargon. I will move slowly though my points, and you non-CLLers and non-BMT readers, might still find it interesting.

I am very very very immunosuppressed. Our G-d given immune system is most redundant and extraordinarily complicated. I will make no attempt to untangle that twisted web for you, but I will grab some of the low hanging fruits of knowledge and explain how it applies to me.

First, because my bone marrow has been suppressed, I am not making nearly enough neutrophils, the most common white blood cells that is the back bone of the immune system. Because of their short life span (they work a 12 hour shift in the blood and then die), they are a good marker for not only how my bone marrow is doing, but also when my new bone marrow is kicking in. In fact, when my neutrophils are over 500 three days in a row, that suggests my graft is starting to work. The great news is that my nascent neutrophils have climbed from 70 to 300 in only 4 days. Go graft go! There is nothing magic about the 500, but as the number (my ANC) climbs past that mark and especially past the 1000 barrier, I am at less risk of a bacterial infection such as a life threatening lung infection. 

My cancer is of a different white blood cell (WBC), the B lymphocyte. It is involved in humeral immunity. The term humeral is a holdover from Hippocrates and the 4 humors. Medicine can be slow to change its revered terminology. Humeral is differentiated from cellular immunity which is mediated by the T lymphocytes.  B cells are involved with making specific antibodies against specific invaders, a learnt response. A good example of  B cell directed learnt antibody production is the protection we get from vaccines. In contrast, T cells can organize and directly destroy the invaders themselves, mano a mano. The cell itself is attacking the bacteria or virus, hence its moniker, cellular immunity.

I have already almost no antibodies because of my CLL, and now it is worse because of the chemo: FCR. The Fludarabine (F) is famous for knocking out T cells to levels of those with AIDS. This is good in that it prevents me from rejecting the graft, but my risk of infection is long term. Cytoxan (C)  suppressed the growth of everything in the marrow. Rituxan(R) knocks outs by B cells, healthy and cancerous.  And I am also on tacrolimus and sirolimus, two mushroom extracts that suppress my T cells so first I don't reject my graft, and secondarily my graft doesn't reject me (graft versus host disease).

So you get the picture: A blasted bone marrow, dangerously few neutrophils (neutropenia), depleted and suppressed T and B cells, and almost no antibodies (immunoglobulins). The recovery with be erratic, with the neutrophils coming up first, but it may be some time before the rest of this system is humming. My antibodies may never fully recover. I remain at long term risk for opportunistic infections, like fungi, parasites, and common bacteria that live harmlessly on our skin. or in the soil. So I need to be vigilant, long after I am out of here and long after the first 100 days. A small price to pay for a cancer cure.

The infectious disease specialist saw me today and confirmed the diagnosis of Herpes Simplex (HSV or the common cold sore virus). 90% of us have had this virus which lies dormant in our nerves. Sadly, but truthfully, herpes is forever. For most of us that is not an issue as it is kept in check by our normal immune system. As I explained, mine is missing in action, hence the flare-up. The good news is with the increased anti-herpes meds I am feeling much better.

Even this vegan knows, that to make an omelet, you must crack some eggs. I have gotten cracken.

Hair today Gone tomorrow

Thy knotted and combined locks to part

And each particular hair to stand on end

Like quills upon the fearful porpentine.

Shakespeare

The problem with this rapid loss of hair is not just the vanity issues, it's the hair in everything issue. Not just the shower drain (gross), and the pillow (itchy), but I have in my eyes (blurry) and mouth (tickly).

I have hair on my keyboard and in my food. Hair everywhere. Reminds of Pharaoh and the frogs.

How do I to respond?

Should I wear a beanie (for my Quebecois friends, that's a toque)?

When will it end?

Will I become glabrous or just bald?

The good thing is this certainly a self limiting problem. Either the alopecia just stops of its own accord or I just run out of hair.

Full Catastrophe Living Jon Kabat-Zinn

Keep your eyes wide, the chance won't come again

Bob Dylan

Speak now or forever hold your peace

A remnant of the Catholic Church banns

A non medical post today.

Well almost. I am feeling my usual daytime improvement as my cortisol levels climb in the AM, and I have the distractions of family and my first visit from someone outside my family (well we might be related, but we would probably have to go back to King David to find the link). My funny friend, Dr. Arthur Zimmerman, world famous dermatologist, came by to joke with me and the nurse, and confirmed the diagnose of my rash as herpes simplex. Not folliculitis for which I was originally treated.

Here's what I am pondering. I have been focused on the goal of curing my leukemia. I have put together a radical plan and am in the midst of its successful execution with single mindedness and if I might say, at some risk and many costs. I try to be clearly directed with no distractions towards that life of health and joy that my donor so simply and eloquently wish for me.

So what's the problem. The problem is that the journey is the destination. By that do I mean the the painful and the mundane? Do I mean the blisters and the constipation? You bet I do. I need to give my all to what the present presents presently. Otherwise you can't get there from here. I need to be aware of what obstacles or inconveniences are diverting from my goal, and need to give them my all.  I have to heed the words of Luke 4:23: Physician Heal Thyself, AGAIN. So I call my on call doctor and tell her what I think is going on, very diplomatically and very clearly.  They have missed the diagnosis of my rash, and this is no time to be timid or humble. This is critical care.  I must say that the on call doctor was most responsive and helpful.

But what if you are not a doctor and you are not dear friends with a world famous dermatologist. You must trust your instincts, and if there is something that is not going as planned, politely get it fixed.  Call for help, get a second opinion, ask for a consult. It means using every gift that G-d granted you, but especially your courage and wisdom and grace. It means paying close attention to every sign post on the road to recovery, even the obscure ones that are difficult to read. This journey has no shortcuts and many possible fatal detours.

So it is process or result? Is it journey or destination? Do we, fellow travelers, keep our eyes on the target or stop and smell the roses and feel the thorns? YES is the answer. Live in the moment with purpose.

Jon Kabat-Zinn said it something like this: 

Don't Cogitate, Agitate, and Analyze. 

 

Meditate, act and be aware. 

Day 12+

Very tired and sore, and not very literate this morning. More sores, now in my increasingly hairless scalp.  Between ice packs for my sore PICC line and hot packs for my sore nose, I am quite the study in contrasts. Little sleep. I have no doubt that this is a minor detour on the road to a cure. I am being treated for infected hair follicles (folliculitis) and disseminated herpes (my diagnosis with the help of a doctor friend) I know, I am not supposed to be playing doctor but this is critical stuff and playing doctor is what I do. Infections are the leading cause of morbidity and mortality in the immediate post transplant period.  I have no intentions to be morbid and while I am mortal, I don't plan to exercise that option for another 40 years or so.

There is some very  good news is my ANC (neutrophil count) has climbed to over 200 from a low of 70, which just might mean I am starting to engraft. 500 is the magic number.

I will try to write more later in the day. Sleep now.

I got to admit it's getting better The Beatles

Doing better. CT scan and x-rays of my sinuses are scheduled. Waiting for antibiotic and increased antiherpetic meds, but the hot shower and being upright in a chair and mostly the distraction of my son's visit have really helped. Everything is worse at night, which means everything is better during the daylight

Mama told me there would be days like this Van Morrison

When I get to the bottom 
I go back to the top of the slide 
Where I stop and turn 
and I go for a ride 
Till I get to the bottom and I see you again 

The Beatles

Rough night so a short note. Very tender nose (yes my right nostril really hurts), sore throat and mouth, headaches, joint aches, painful skin lesions, rashes, chills, low grade fever and general malaise.

Hot packs, salt water nasal sprays, meditation, and Tylenol with codeine helps.

The on call doctor is starting me on a broad spectrum antibiotic, imipenem or Gorilla-cillin as it's commonly known for its ability to maul just about any germ except MRSA.

Except for the fact I still have almost no neutrophils (those same granular white cells that fight bacterial and other infections), my counts are stable, with my platelets being above normal now. My neutropenia (low neutrophils) is from the chemo and the reason I feel so crappy.

I am optimistic that I will much better after my hot shower and the antibiotic kicks in.

More later.

a drawing of my dad (Ben Koffman)

a drawing of my dad (Ben Koffman)

Almost cut my Hair CSNY

Hair, hair, hair, hair, hair, hair, hair

Flow it, show it

Long as G-d can grow it

My hair

Gerome Ragni and James Rado (the Musical Hair)

My patient care aid worker offered to shave my head today. Your see my hair is falling out. I am in complete denial. This child of the 60s is holding on to every grey lock as long as possible, even if my pony tail is history (but history does repeat itself).

I am coming back hirsute.

Waiting for a Miracle

Somewhere out there is a place that's cool
Where peace and balance are the rule
Working toward a future like some kind of mystic jewel
And waiting for a miracle

Bruce Cockburn

Day 9+ (91 to go) 

The gravity of my radical course is pushing me forward. My counts remain strong, except for my disease fighting white cells. They are missing in action, along with all my antibodies. Like the Maginot line, my defences are useless. So I am counting on no attacks from sleeping germs within: Intestinal bugs picked up on my past travels in the not so hygienic Kyber Pass or the jungles of Honduras or the medinas of Morocco, or from routine childhood illness like chickenpox waking from there deep sleep as there is no guard at the door, and of course from all the exposure to snotty nosed kids and very sick grownups in my years as a family doc. I also am counting on no dastardly attacks from outside. Hence, the masks and gloves on all visitors and the positive pressure room and the food cooked to death. No plants hiding fungi. And all the preventive antibiotics.

The next hurdle is engraftment, which could start soon. The shorter my nadir, the better my chances. That Tom Petty line again : Waiting IS the hardest part.

My biology does have its own unstoppable momentum now. I will become chimeric (of two creatures) and eventually I will have only the shiny new 22-year-old cancer-free immuno-competent blood system. Cured. What I am doing now is refusing to get sick. My unexplained rashes and mild skin infections are tolerated, but I will accept no serious attacks on my nascent immune system. The window of vulnerability is shortening. My doc says every day without fever is another day in the bank.

I am waiting on a miracle, a miracle that will come to pass.

Please register for Robert Passananti's bone marrow drive

Help me if you can

The Beatles

This is an abbreviation of the post written (at 4:54AM!) by his wife, Hardip, from my friend Robert Passananti's caringbridge blog:

 
http://www.caringbridge.org/visit/robertpassananti

As Hardip explains, all it is is a cheek swab and you could save a life. Robert is still looking for a donor that is a good match and sooner would be better than later. Robert is another CLLer with very young children.

You can also call City of Hope at 626 471-7171 and they can do the swab or you can even do it through the mail. Read on, please, and as Dr Laura would say: Do the right thing.

Thanks

WEDNESDAY, JULY 09, 2008 04:54 AM, PDT

Hi everyone! Hardip here. Robert and I constantly joke that between his “chemo brain” and my “mommy brain” we don’t have much chance of engaging in an intelligent conversation.However, we did manage to muster together the thought that we could post the bone marrow drive info on this site. So, here it is: Sunday, July 13, 2008 10 am – 12:30 pm St. Mark Presbyterian Church 2200 San Joaquin Hills Road Newport Beach (San Joaquin and MacArthur – near FashionIsland and Roger’s Gardens). This is a great chance for you to become a part of the bone marrow registry and potentially help either Robert or someone else. So, come on out and bring your family, friends and neighbors. This only requires a cheeck swab - no needles. :) If you can't make the drive but would like to register, you can register online at:http://marrow.org/HELP/Join_the_Donor_Registry/Join_Now/join_now.html - you'll receive the kit in the mail. Please make note of the ID number you're given. Registering only requires a swab of your cheek and some paperwork - no needles! Imagine, you could be the one to save someone’s life – what a gift. Here is a link to the flyer.http://www.911turboregistry.com/flyer.pdf

-w. koffman

Letter FROM My Donor

(Mister Postman)

Mister Postman, look and see

(Oh yeah)

If there's a letter in your bag for me

(Please, Please Mister Postman)

Why's it takin' such a long time

(Why don't you check it and see one more time for me, you gotta)

Wait a minute

Wait a minute

Wait a minute

Wait a minute

(Mister Postman)

Mister Postman, look and see

(C'mon deliver the letter, the sooner the better)

Mister Postman

The song was originally written by William Garnet, he then gave it to Georgia Dobbins of the Marvelettes who then rewrote it. See, http://www.history-of-rock.com/marvelettes.htm

I had tears in my eyes reading this letter. My question is: Will this make me a better student of Talmud? Will I finally be able to read Hebrew?

Dear Recipient,

 

I apologize for the delay in responding to your letters as I only returned home this past Shabbos.

 

I am a 22 year old yeshiva student in Israel. Your letters touched me greatly and I would like to share with you my feelings: At the beginning when I was first told that I was a match I was very moved and happy that I would have the opportunity to participate in possibly saving someone's life. I approached the donation in good spirits and with a high degree of awareness of what was taking place, though with perhaps not enough of a sense of the urgency of the situation. After the donation, when I received your letters, tears came to my eyes as I absorbed and understood the real meaning and urgency of what in essence was a simple act on my part.

 

I hope and pray that the medical procedures that you are undergoing are successful and that you have a complete recovery so that you are able to return to everyday life with health and joy.

 

Please keep me informed as to your progress. If you feel strong enough and it is not too much trouble I would also like to know how the transplant was carried out.

 

Thank G-d, I feel fine and truly enriched.

 

With blessings for a complete recovery,

"ALL'S WELL THAT ENDS WELL" Shakespeare

  I woke up this morning

I suddenly realised

We're all in this together

I started smiling

'Cause you were smiling

And we're all in this together

I'm made of atoms

You're made of atoms

And we're all in this together.

And long division just doesn't matter

'Cause we're all in this together...yeah

Ben Lee

First some news. My wife, Patty, is OK. The rental car she was in was totaled when a kid ran a stop sign. My group's medicenter said nothing broken, but she is going to be sore everywhere for awhile. I am grateful that my daughter Heather and wonderful neighbor Helen came to the rescue. I am not sure she can drive for a few days, and she certainly can't sleep over in that marvel of ergometrics, the hospital chair that pulls out in a half hearted attempt to be a bed. Beside our shared missing each other, it just reinforces the capricious nature of our lifes, our shared interdependency and our ultimate vulnerability. We need each other. We are all in this together.

A brief musical interlude

The blues ain't nothing but a good man feeling down

Leroy White (1913)

You have met my family and a few of my dearest friends: Todd and Trisha Mills and Dr Arthur Zimmerman.

You are in now for a special treat. Prepare to meet Unca Howie Forman, from Montreal, guitar player extraordinaire and a very funny guy and a blessing in my family's life.

I will let the music and the accompanying faces speak for themselves.

Talk to me Howie!

                                     

Mirror, mirror on the wall

I check my luck in the mirror

The Boss (AKA Bruce Springsteen)

Don't we all.  In the end. Check our luck in the mirror.  

Nothing medical in this post. Just some existential optimism. 

What I see starting back at me from the looking glass, despite some raccoon darkness around my eyes,  doesn't look like leukemia, doesn't hint of graft rejection, or drug toxicity or the immune battles of graft versus host. No pallor here. No jaundice. Not plethoric. The eyes, if I say so myself, look bright and engaged and focused. This is a fight I am winning and will win.

JP Sartre was dead on target when he taught us "L'enfer, C'est les autres" For the non francophiles, "Hell is other people" L'etre and neant'. Being and nothingness. This is the secular doppelganger of Moses admonition to choose life. Define yourself. Don't let others' expectations or statistical predictions determine your fate. Look deeply in the face of the other. Be there for them. That is what we are here for, but you must not be defined by the other. 

It's amazing how my adolescent angst still informs my present mid life passages.

Easy come, easy go: The late night loss of a PICC line

Slip sliding away, slip sliding away You know the nearer your destination, the more you slip sliding away

Simon and Garfunkel

Not much of a story. And it's another medical one. I have thought of labeling my posts as medical or how's the old guy doing, or comic relief or some pressing existential issues hidden in a gauze dressing.  And though I favor the last three, I know some want the medical details and it is a good way for me to keep a record.  Plus the divisions are so arbitrary and the best moments I share have all the elements.  Not this one though. Just the fact, sir:

Tired and sleepy after staying up late to start a "transplant" Excel spread sheet of my lab results,  I reached to turn off the wall light. When I moved back to bed, the external "start" of my PICC line had slipped silently and painless and I might add, bloodlessly from my left biceps to my left wrist. 28 centimeters of tubing that used to run snug to my heart in its sterile vascular chambers was now lying on my not so sterile flexor surface of my forearm. Seems the locking device had failed. Oh, wouldn't it be nice to be simply able to slide that tube back to the heart of the matter, where it belongs, quietly and efficiently using its 2 lumen capacity to effortlessly keep me hydrated and at the same time keep separate the proper balance of poisons in a safe and measured way. But on it's few second journey from out of arm and to onto my arm, it may have pickup uninvited hitchhikers, normally innocuous skin bacteria that my suppressed immune system might welcome to a new home in my circulatory system, or worse yet in my heart taking up long term residency on its valves (subacute bacterial endocarditis or SBE). rather than rebuffing their inappropriate advances. Not a risk worth taking. So after a careful taping up twice of the evidence of the extruded tubing, and two tries, I got an old fashion butterfly IV above my left wrist doing the heavy lifting for now. My PICC was removed the rest of the way in the AM, also a non event, and sent to the lab to make it was bug free. When I get the new PICC line is antibody's guess. Today? Tomorrow? In the meantime it's old school blood draws from the veins in my arm. No fun at midnight. Ouch. And to add more fun to the mix, all my IVs are not compatible, so either I get a second peripheral line, or I run my antivirals and antifungals through at double time and shorten to 10 minutes for a quick shower my beloved unplugged time (read my romantic last post) while holding my anti-rejections drugs, but not for too long. If we time it like a NASA lift off, I can be running the tacrolimus, the continuous IV anti rejection drug for more than 22 hours instead of the usual of a bit less than 23. A gamble worth saving a vein or two. I might need those veins later.

And if this is my biggest issue in my transplant course, all I can say is that I am a lucky man. 

My counts are starting to rise, too soon for engraftment methinks, so it must be my old marrow, or maybe just a blip. 

Platelets are now 275, up from 160 July 3, Hg is rock stable at 11.5 almost the same over the last 5 days, and even my most sensitive white cells have climbed from yesterday's 1.2 to 1.5 today. Nadir is usually day 10-14. I am day 9, so I wait. Funny to be hoping to feel miserable and vulnerable. True, the immediate goal is to survive the transplant, but the reason for all this is to be cancer free.