One year ago I received a gift of life

In the whirl of activity of being back to work, and my son's on and off return from Israel, and my daughter and son in law's trip to New Zealand, and NYC daughter's trip to Montreal, and my other son's three ongoing art shows, including hanging his wall space at the festival of arts in Laguna Beach tomorrow, and urgent car repairs, and doctor's appointments, it is easy not to pause and consider and give thanks.

Last year on July 1, I received my transplant.

Thank you to my unknown donor. Thank you, thank you, thank you!

Thank you to my family and friends (old and new), especially thanks to my wife and kids. 

Thank you to my care givers and healthcare workers, especially my doctors. 

Thank you to my fellow travelers on all or parts of their similar adventure.

Thank you to my colleagues and staff and my medical group.

Thank you to my patients. 

That's all I have to say today.  I am stopping for a moment to remember that I have reason to be thankful to so many. 

Looking at the blood, but not the bones

While I never really leave the world of CLL behind, as everyday I read some article or talk to a friend or read and write a few emails, and of course peruse and occasional post to one of the various CLL websites, I don't spend much time thinking about the cancer in my life. What a sweet change that is.

Not to belabor the point, but it is always the 800 pound gorilla in the room. One swipe, one wrap of its knuckles, and my reality would be reoriented again. But for right now it seems to be sleeping deeply, and I am doing my best to avoid anything jarring that might disturb its slumbers. Hence my organic vegan lifestyle, my regular exercise, my detoxifying Zeolite, and my beloved Japanese Sencha green tea.

I am drawn back into the world of personal vigilance by doctors' visits and waiting for lab results. It never gets easy, but it does get easier. I had my blood work done late last week in anticipation of my doctor's visit next week.

CBC was normal except for a low lymphocyte count. Is that the ghost of Rituxan I sense? (I just watched Kenneth Branagh's Hamlet- WOW- Rent this very long movie! -so ghosts are on my mind). Platelets remain stable. In fact it is all pleasantly boring. A nearly normal CBC. How divine.

My B2M is a meager 1.4 something and falling. This tumor marker is never been this low. At MDACC, they put much credence in this inexpensive test as a strong predictor of the future. By their figuring, my future is bright. (In the world of CLL, there is no agreement, and other experts dismiss the value of this prognostic indicator after any treatment.)

LDH is another cheap test that hints at breakdown of cells. The higher, the worse, but maybe not. Mine is still very normal, but up a bit. I tell my patients normal is normal, and not to pay attention to small changes in levels, especially in the normal range. Follow the trend. But I don't listen to my own advice. I think instead that maybe my diet and detox is cleaning up those pesky nodes, and the higher LDH is the battlefield litter.

The only slightly high reading is my uric acid, of gout fame. This is certainly not from sneaking beer and organ meats, so it might reflect increased cell kill.  I'm OK with that. The green tea may also play a factor. Plenty of fluids will keep this from being a problem.

My blood chemistries are all otherwise well, but my immunoglobins, no surprise here, are dismal. My IGG, the most important, is miserably stable at 377, less than 1/2  normal and my IGA and IGM remain missing in action.  Immunoglobulins rarely recover in CLL. even in remission which stinks.

This raises the whole IVIG question again. 

Now my chance to boast. Total cholesterol in the low 140s, LDL in the 70s and HDL well over 40. The rewards of clean living.

A few weird tests are pending: Vit. D levels, zinc and selenium. I am not expecting any earthquakes.

Overall, I have to be very grateful for another good set of lab results.  If I can keep this up only four more years, I could be sneaking up on a cure.

The critical questions for Dr. Forman will be: When to image my nodes and when to do the next bone marrow biopsy. More on that later, right now I will bask in my continuing good news.

High Contrast

I have spent the better part of the last few days studying Jewish texts with friends from across the country. We call ourselves, Mifgash, Hebrew for coming together or encounter.

I am the token non intellectual allowed to listen in and occasionally try to squeeze in a word (with only limited success) in an audacious and pithy discussion of personal struggles, political realities, and moral imperatives. The rigor and humor and depth and dimensionality of the discussions make me feel so alive.

Today was extra special in that we discussed Levinas, the philosopher and Taldmudist who most informs my life. The philosophy of this giant of Western thinking is not rooted in ontology or epistemology, but in the moral demands of the other, and not in some abstract concept of the other, but in the particular face of the next person you encounter, friend or stranger. An example mentioned was the primal demands of the crying baby that pierces and shatters the world you have constructed, and demands you deal with someone else. No man is an island.  A neat construct of the world is smashed by the need to acknowledge and serve those you encounter, each and every one. That is the core of his philosophy: a highly demanding morality. 

Levinas' texts are very opaque and not easily digested or unpacked. I need a teacher, and I had a great one today.

We have also looked at vexing questions in traditions of forgiveness, moral education. the need to move beyond the Holocaust,  and the middle east. Great stuff, great people. Stretches my mind and forces me to reexamine my beliefs. I have added 4 more books to my must read list.

But I left early on Friday night to go a place where within 50 feet I could find a tattoo parlor, a head shop, an adult bookstore, and a Laserium. 

I am of course talking about Hollywood and Vine. In case you wondered, I was there for the opening of the last, the Laserium. Some good friends are founders of  this very different kind of mind expanding project. That, by the way is where I got my picture taken with Mick Fleetwood. It is also where I listen to an incredible sound system that punched out the sounds of the Beatles, while 3 dimensional lasers danced wildly to the beats all over the theater.  Very trippy. Listen to the color of your dreams. The Beatles rock my world.

And a high contrast to my Sabbath studies.

Despite how tiring all this is, it all helps recharge my batteries for the road ahead.

                                          

Me and Mick

Me and Mick Fleetwood

My buddy Mick needed someone to open for his band (Fleetwood Mac)  and asked if I would do one of my classic comic routines, or maybe give a medical education lecture on irritable bowel syndrome or menstrual migraines to warm up the crowd before the band took the stage.

I told him I would love to help, but I was worried I might set the bar too high, and I didn't want to make his band look amateurish. He then offered to open for me, but I told him I was really committed to my blog, so it would hard for me to go on tour.

Have you any dreams you want to share?

A year ago

A year ago, I checked into City of Hope for my chemo conditioning for my transplant.  Whooosh. Time is a jet plane.

I never thought going in that I would reject the graft, but I did. I worried about GVHD (graft versus host disease), and infections and relapse. I really worried about dying, but I never dreamed I would reject the graft.

Maybe it was a blessing. None of the horrors of GVHD for sure. No graft so no graft versus host.

More importantly, one year later, I have never had a lower tumor burden since the moment of my diagnosis than I do now, despite my failed transplant. Almost four years after I discovered my CLL, my disease, if it is anywhere, is deep in a few nodes in my guts. And even that is in doubt. I may be cured.

And all this has happened with a single week course of heavy duty chemo (FRC), a failed transplant, a splenectomy and some immunotherapy (R) and an immunosuppressive (cyclosporin) drug, not even used to treat CLL.  Who would have thought. Not the conventional path for sure. Maybe I am a trailblazer. The jury is still out.

Soon I will update you all on my diet (still raw vegan) and supplements, but I suspect their role in my deep deep remission is supportive. While it may be possible, I have my doubts that diet and zeolite can do the heavy lifting by themselves.

So what's the story? Frankly, I don't care. This is a good place - I hope I can stay in this sweet spot, for say, another 37 years. That would make me 95, and I would be ready then to move on to my next adventure.

Bad news

I promised to be more autobiographical, but today a good friend found that the kick-ass chemo he was been stoically tolerating for months hasn't touched his refractory CLL in his big nodes in his guts. Today's CT was virtually unchanged from the one prior to start of R-CHOP.

Bummer.

I also learned from a friend with metastatic breast cancer after state of the art therapy since February that her disease progressed into new bones and is more active in the old sites. This was all discovered on today's follow-up bone scan.

Double Bummer.

Cancer really does suck.

For both my friends, nothing is truly different today  in terms of their cancer than yesterday, and yet everything is changed. The disease was there along, lurking, beneath the hopes and statistics. Its reach was not revealed until they bravely pulled off the sheets and looked, because they did not want to live with illusions. Until the phone calls they both received tonight, all was still possible. They chose to know the facts, so after the despair and the anger, they can chose a new path. They can chose life. As my friend with breast cancer, said, not trying is not an option.

Today is also the one year anniversary of the loss of  one of my avatars who died the day before I entered hospital for my transplant, from complications of his. He blazed a trail for me and many others.

I owe him and his wife more than I can ever express.

I could use some good news.

Last day to register to be a bone marrow donor for free

Today is  it.  After today, it will be still be wonderful and the right thing to do. It will still be painless, it just won't be free.

You know you want to help. So don't put it off. 

See my prior posts, answer a few questions, swab the inside of your cheek, and maybe save a life.

Tomorrow I will get back to my personal posts, but this is a special moment and needs your attention.

Others have written me about how good they felt when they decided to become donors. Thank you all who have already said yes.

Be The Match Marrowthon - You Can Save A Life!

Check it out.  It will make you feel good. Thanks.

Be a Donor

Over the next few days, I have a chance to expose those who follow my blog to some chances to make a difference in the world. 

First and with my heart leaping to exploit this unique window of free opportunity,  I am going to be trying with increased vigor for the next few days to do what I can to get people to register to be a bone marrow donor. We get so few  chances to do something so completely and blindly good for a stranger. Seize it. Now would be good. See my prior post for details. No pain No expense. Just a deeply satisfying feeling.

I will be fussing with adding a widget to my blog to help automate the registration- wish me luck.

In the meantime, this caught my eye for fellow cancer survivors and maybe more: As Rabbi Wolpe said: "We are all in remission, it is just that some of us know it."

http://www.cancercare.org/get_help/tew_details.php?tew=emotional_041409&ret=/get_help/tew_archive/emotional_concerns.php&origin=enews_0609p

There will be more to come, but I don't want to dilute this special chance to be a donor.

Soon. I will return to my blog's root- how my individual story may illustrate the risks and benefits of my chosen path for others making their diverse decisions.

For now, I want to be universal, as I might not have unique story to tell if someone unknown to me, had not made a choice to be a donor- to serve the stranger.

"EVERYTHING IS CONNECTED"  

Tom Wolfe

MARROWTHON

Complete a form and maybe save a life.

Become a bone marrow donor. There is no expense and not even a blood test, just a swab from your cheek.

The only hassle is the important and lengthy online form. 

A chance to save a life for the cost of some "paperwork".

The connection is the good people at   http://www.marrow.org/HELP/Events/Marrowthon2009/index.html

Thanks. You will feel good about yourself.  I guarantee it.

JUST SAY NO TO IVIG

I decided  about 1 hour before I was due to start the infusion at 8 AM today to say no to IVIG.

All dressed up with nowhere to go.

Woke up upset and nauseous thinking about it.

It was to be used to prevent infections, but despite pneumonia times two before CLL, I've had no major illnesses since.

Admittedly I was on IVIG for about 18 months, but I have had the CLL diagnosis for 45 months. Most of the IVIG I received then was for my low platelets from ITP and it was a matter, not to put too fine a point on it, of life and death.

It is a very expensive pooled blood product, often obtained from paid donors. It is short supplies often.

The risks are potential. Some unknown infectious agent like an undiscovered unmeasured virus or prion is not found and not inactivated in the processing that causes a problem 10 or 20 years from now. It has yet to happen in years of use. And I have already had tons of it when I had ITP. 

The other concern is that it messes up my gentle raw vegan path to a cure with a mega dose of highly processed  IV protein. Now that is a totally wild conjecture, but it feels real. And you thought I was rational, calculating, and decisive. HA HA.

Its benefits are potential too.  Guidelines suggest you need to be getting serious bacterial infections to the tune of at least two a year, before you use this precious resource. Good hand washing and the occasional use of a N95 mask should do the job for me.

I have a friend, a fellow doctor with CLL, whose levels have been lower than mine for years with no issues, so it it not just wishful thinking to hold off.

My plan is to wait and rethink it- there is no urgencies. If my IGG level continues to tumble or more critically,  if I start getting bacterial infections, then I will need to revisit the decision.

But first I will go back to sleep.

CLL SUPPORT GROUP IN ORANGE COUNTY

This is a letter I recently posted on CLL listserves. 

Our next meeting is this Tuesday in Irvine. If you think you might want to join us, please read the letter and email me @ bkoffmanMD@gmail.com 

Friends,

The internet lists provide a great service, but at times the real must replace the virtual world.

That is why a small group of us meet at 7 PM on the second Tuesday of nearly every month. We mostly live between Newport Beach and Yorba Linda, CA. but we are not picky about zip codes.

The meetings are rotated between our homes and usually last about 2 hours, Though some new CLL studies or news may be presented, the focus is really to share the latest in our personal medical history, and support each other. The meetings are friendly, very casual and very candid. The group is not political or activist. We are a pretty pure and simple support group.

While we believe it is important to keep the group small, we are happy to see if a few local members of the list might be interested in joining us.

Please email me with contact information. I or another group member will get back to you, On the chance, we get an overwhelming response, we may need to say no to some of you. (Maybe we could scalp tickets like TICKETMASTER does). Just kidding. There is no costs involved other than some refreshments if you choose to serve as host.

I can't say how important and helpful the group has been for me in my struggles with CLL. I hope you might consider whether joining us would make sense for you.

Be well

Brian

RTW

My office was festooned with decorated silly and serious pictures of me. I felt so welcomed.

The return to work was sweet, and relatively smooth, though my first patient had a low grade fever.

My medical chops were all there, and I was immediately in the zone with patient care and eduction. Felt good.

The EMR (electronic medical record) was a different story. It will take some time to get my groove back. 

And my batteries were fully discharged after a few hours. I just don't have that much energy reserve. I was exhausted by the time of the drive home. But it was OK.

My medical leave of absence didn't feel like nearly a year. It felt like a lunch break.

Notice to my patients

I am more than excited about my gentle return to seeing patients. Despite the IVIG and the risks, my getting back to work restores a sense of normalcy to my life. It exerts an external control, so my hours are less transfixed by the existential questions of how to fill my days. Like many of us, my work imbues my days with meaning. Being a family doctor, I move in the realm of meaning and value. It wraps around me and makes me happy and purposeful. (In the last year I have seem to have blissfully forgotten all the bureaucratic hassles of medicine in the 21st century).

The last letter I sent to my patients was to share that I was going to gone from the office for a long time for a transplant for leukemia. It was shock to nearly all of them. Most had no idea. But I said I'd be back.

Almost a year to the day that I left, here is the note I will have posted at the front desk, tomorrow.

For Dr. Koffman’s Patients

Dr. Koffman is thrilled to be back to work.

Since his bone marrow transplant on July 1, 2008 he has achieved a deep and complete remission. Despite some stubborn lymph nodes in his gut, his blood and bone marrow are totally free of cancer. This good news however does not mean his immune system is fully recovered or that he is cured. How long this wonderful remission will hold is anyone’s guess (he is counting on about 40 years, but will settle for 35), but whatever the future brings, he is planning on enjoying each day he can at the clinic.

The leukemia and its treatment have however significantly affected his ability to resist infections.

As he wants to be able to increase his hours in the office slowly and avoid any setbacks, here are some simple precautions:

If you believe you might have an infection or have had a close exposure to an infected family member or friend (cough, fever, suspicious rash, etc), you would be better served by having your consult with one of his partners. Please tell the front desk and they will help you.

If you recently have received certain live vaccines such as Yellow Fever, MMR, or the nasal spray flu vaccine, please schedule with a different provider for the next two weeks. Most common vaccines such as flu shot pneumonia, and tetanus are not an issue.

Finally, if you are the hugging type, please feel free to let Dr. Koffman know you are feeling so inclined, but please refrain. Your warm intention will more than suffice to add joy to his day.

In summary, please let the front desk know if you think you are infected or have been exposed to an infection or if you’ve had a recent live vaccination.

Thank you

Low immunity

My immunoglobulins are very low.

That is not a surprise as they are the antibodies made by mature B cells, and I don't have many.

It is a well recognized, but poorly understood fact that even in remission, patients with CLL rarely see their immunoglobulins return to normal. The white count and red cells, the blood chemistries, even the tumor markers such as B2M may all return to normal. In a complete remission you could pass any insurance physical if you didn't have to answer any questions.

Until they checked your IGG, IGA, and IGM. They would invariably give away your cancer secret.

They just don't bounce back up. Mine sure haven't. Quite the opposite.

My IGM and IGA have been nearly the lower limits of the ability to be measured for a long long time, and they are still miserably low. That was expected.

The news is that my IGG sank below 400 to 369 for the first time since my diagnosis. Normal is between 700-1600. It fell 73 in less than two months.

What does this mean?

In terms of the CLL, probably not much. My B2M (an important prognostic factor that reflects tumor load) was a real low 1.4 and my CBC was great, so I don't think my cancer is active again. 

In terms of infection risk, it could mean a lot. You really need IGG to fight infections, especially bacterial invaders.

The good news is that there is an option: IVIG or intravenous immunoglobulin. It is a very expensive pooled blood product that is given over several hours in the infusion lab. Studies suggests it can reduce by half the risk of infections, especially life threatening pneumonia.

It means back to the cancer center, back in the IV chairs, back to all those awful premeds (steroids and anti-histamines).

So much for being Mister Natural.

It is a reminder of the cancer and will likely become a monthly routine.

But there is a good reason I am doing all this.

I need my immunity boosted because....

I am returning to work. Very very part time. Less that a full day a week. But it's a start.

It's been almost a full year since I last saw a patient in the office. It will be so good to get back to practicing medicine.

I am so happy and so excited.