Crystal Cove

Can I really go to the beach and leave it all behind? I find out this week, as I pack up for a room in a communal cottage at the enchanting Crystal Cove, only a 15 drive minutes from my home and a stone's throw to the Pacific surf.

Busy again

I have been researching allergic reactions to IV non ionic contrasts for upcoming CT scan, camping in 107 degree heat, where there was a wonderful swimming hole with a scary cliff  from which you could dive into the water (more about that later) and a nearby very old stagecoach inn where rumor had it the real Zoro hung out. We are just back from the OC fair. Loved the farm seeing all the baby vegies growing. I am an easily amused raw vegan. Wowed by the unicyclist juggling while 12 feet in the air on his one wheeled vehicle and the the magician selling his magic tricks (I bought them all-I always wanted to do corny magic) and the AL's 3D brain (good brush up for that neurosurgery I am doing next week- just kidding) and the sand sculptures, the carny smells and sounds and lights, and the just whole vibe. My son Will is the featured artist and his stuff is beautifully displayed, but there is much fine work to enjoy, especially some of the photography. If you go to the fair, don't miss the visual arts building.

Going to the beach for a week to write and read, so there will be little internet.  I may have some work to do related to Family docs and treating HIV+ patients, but that would be it for the week. 

Soon I may have a big surprise to share with everyone.

Pageant of the Masters

Great fun at the Pageant of the Masters. Wonderful illusions that use real people to mimic the illusions that are paintings and sculptures that represent real people. 

Very Alice through the Looking Glass.

It was a treat to meet the 30 or so people that ranged from recent grads to older alumni from my alma mater, McGill. Great school. Great city, Montreal. Great people tonight.

It was a bit weird shopping for the wine and cheese when I don't get to eat any, but it wasn't that long ago that I lived in that world and I was told I had chosen well. I was good- not one drop of Merlot, not one nibble of Brie. I waited to get home to my raw organic vegies and nuts, and am glad I did.

But the evening wasn't about food or wine, but about fine art and the people who make it and the people who love it and support the artists.

Hope those who are local can get out to the Festival of Arts in Laguna Beach. I might even be able to help you will tickets to the Festival (not the Pageant).

You will enjoy it. Check out Booth 30C where you will see my son, Will's amazing work. And wander around. Lose yourself in the creative maze. It will take you away from the mundane for awhile, and give you a new way to see the world.

Isn't that is the gift of art? Picasso said" Art is a lie that makes us realize truth." The Pageant of the Masters with its weird mix of reality and illusion is living proof of Pablo's words.

Live from the Infusion Center

The big change from last year is access to the internet.

I was not heavily pre-medicated for the IVIG. Let me pause there: Pre-medicated? No, that does not mean stretches or incantations or communal prayers before the medicated infusion begins. It means taking medications before the medications.  Shouldn't pre medication be something you do before medication? Would a better name be the medications you take before you take the real medications? Or more simply pre-medication medications. 

As you can see, it is not a good thing to sit me in a chair for hours and hours with an IV in my arm. My mind noodles away.

This time my pre-meds were only Tylenol and Claritin.

I refused the Dexamethasone (steroid) and switched from the heavily sedating Benadryl to the less drowsy Claritin. You have the same power- to say no or change your meds.

Despite my best efforts, I still was very very sleepy and have just woken up after four hours here. IVIG makes me tired, and I understand that happens to others too. No other ill effects.

It is strange to be back. People say happily: "It's been a long time." It would be wrong to say" Nice to see you again" or "Welcome back" That would sound creepy. Like prison and detention hall, the cancer infusion center is never a destination in itself and at its very best is only a launching pad to a better and healthier place. The kind nurses here at St. Jude recognize the awkward nature of their good work in helping the patients re-enter.

Like the ER or the funeral home, the infusion center has a sour ring if you say business is good.

The staff is cheery, efficient, and compassionate, but also subtle and professional.  I know how hard it must be for them to deal with all the repeat business. 

And yet the hidden dimension of this place is that there are too distinct exits- Exit One to a healthy distance away from the illness that brought the visitor. The other, Exit Two is to what some euphemistically call a "better place". Better than the hours in infusion chairs for failed treatments and far better than what is too often lengthy and horrible terminal suffering.

The nurses and staff all know this. The two ways out. And while the door here is still open to return, there is always the hope that we will all be leaving by Exit One. And so their smiles seem even brighter as they man this way station in times of crises. I am grateful.

Infusion Time Again

And I am no talking green tea infusions.

Tomorrow, I return to the Infusion Center  at the Cancer Clinic for the first time in over a year, the first time since I was discharged for my transplant last July. I am back for my old friend, the ultimate protein shake: Intravenous Immunoglobulin or IVIG as it is known to its fans and detractors.

It is a pooled blood product, screened and cleaned for all KNOWN infectious agents. The operative word is KNOWN. Could some unknown prion or virus be lurking, ready to strike in 20 years or the next time I might be neutropenic (low neutrophils or one type of white blood cells that fight infection)? Could be, but the track record over the last decades is perfect. No reason to expect trouble now. Plus I am planning on never being neutropenic again.

With my lowered immunity and the bugs in the air these days and the days to come, the risk of me dying from a pneumonia or the flu is pretty real and much more present. There is only the present, the Zen master teaches.

I will act on the known and not fear the unknown. IVIG here I come. No last minute cancellations this time around.

But being back in the "chair" at the Cancer Center is a stark reminder of my scary past when I alway wore long sleeves to hide the IV marks from my multiple treatments and lived in fear about what my next platelet count would show and even, at its darkest moments, if I would wake in the morning. It hints too at my uncertain future. 

And it confronts me with my present vulnerability.

But it is also a bond with the community of those still up to their eyebrows in their cancer fight. Not that I have left the fold. I pledge that I will never leave  the fold, even on the other side of a cure. That's where I am headed, and I plan to pull as many of you out of those troubled waters to the safety of that blessed shore. Maybe not pull you, but at least show you that it can be done and one way to do it. If IVIG is part of my swim to that promised land, so be it.

Steroids and CT scans

A number of you have asked why the "roids" before my CT scan. No, it is not to build my body, or even relieve my arthritis, though it sure does do the later.

Steroids are not part of the usual prep for a CT, unless you are allergic to the IV dye, which I might be.  I broke out in a gentle rash that started the next day. Nothing dangerous, no swelling, no wheezing or shortness of breath, no hives. Just a mild, slightly itchy raised bumpy breakout on my arms and chest. Lasted a few days.

Enough to raise eyebrows. Likely significant, but unlikely to become scary. The irony is that I saw the dermatologist the same afternoon that I had had the CT in the morning, and I had nothing to show him. The reaction was to appear hours later. Most unlikely the next time will be worse, but it is possible. To play it safest, I take premeds, antihistamines and steroids (multiple doses of high dose prednisone), starting the day before. Steroids, especially by mouth, often take a day or more to kick in.

But steroids, as all our CLLers know, can shrink nodes very fast, sometimes over night.  Mine have in the past.

So my dilemma is becoming clear. My scan is to check the size of the nodes, but the premeds could give a false sense of reassurance.

Do I risk a potential life threatening reaction to get accurate data and avoid the prednisone. or do I play by the rules and take a small risk and get the best results?

I suspect those who have followed me thus far, know which way I am leaning. I am leaning way over the rail, to get the best look.

My plan now is to take the antihistamine, and a single prednisone dose maybe 2 hours before the injection. That should offer significant protection, and not effect the results. 

Skipping the contrast injection (non ionic for those in the know) is not an option I am told, as it helps outline the nodes, but a different brand of dye is possible. Some have different osmolality that might make a difference. 

Guess I have my research work cut out for me.  The rads (radiologists) will want to play it safe. especially with a colleague and friend as the patient, so this is going to take some finesse to avoid the full course of allergic prophylaxis, which seems to me to be a bit of overkill.

My plan is to dig a bit deeper.

Of nodes and scans and things

Next month I have my first CT in nearly 6 months to check my deep mesenteric nodes. 

My lab and my palpable nodes remain unremarkable. I don't want any remarks, thank you very much.

Those who have ridden shotgun with through this wild adventure will remember that not just the timing but the need for another CT scan was a matter of some debate. 

My compromise between those advising never and those advising ASAP was August.

There is much to be learned from what these shadows will reveal. Like a palm reading, only with  xray eyes and a digital brain, it will see my future.

If my nodes are the same (Even this is tricky. Just what are we talking about here? Is 2.4 cm the same as the present 2.2 cm? Probably, because mesenteric nodes twist and turn. It is the gut after all. But what about 2.6 cm?  2.8?  Do I draw the line at 3 cm? What constitutes intestinal fortitude? What is an acceptable variation and what is obvious appeasement of a malignant process?) or if they are smaller, my choice is simple. Celebrate big time, and continue all my weirdness with diet and supplements.

If it is definitely larger, say 5 cm, then watch and wait is over, and I must decide on my next move. More on that later, but first I would probably eat a good cooked meal- still vegan of course.

If there is clear growth, but not much, say the nodes are now 3.2 cm or there are clearly more of them, then things are even more confusing. Lenolidimide (Revlimid) might make a lot of sense, perhaps the R&R trial (rituxan and revlimid) like my friend Robert.

Or I could do nothing and wait and repeat the drama in  another 3 or 6 months. Or I could start FCR or PCR or FCH or the NK study or so on to a nearly infinite set of combinations. Not that I am complaining. It is good to have options.

A bone marrow biopsy (BMB) must precede any treatment plan, as there is already some strangeness to my status: clean bone marrow and blood, and nodes only in one site. Smells a bit like a lymphoma, doesn't it? But I am not sick and most patients with Ritcher's Transformation are not well. Au contraire. I am getting stronger all the time.  Here's where things get even stranger and counterintuitive. If my BMB shows a touch of CLL, that might be actually reassuring, If my nodes are growing and there is still no CLL in my marrow by 4 color flow, do I need a node biopsy to check for transformation? Dr. Kipps has already broached the subject. Not a pleasant or easy path as the biopsy would have to be one of the suspect nodes, deep in my belly.

I haven't even touched on the issue of my premeds for the CT scan, as the prescribed steroids could artificially shrink the nodes and critically distort the results. That internal debate can wait.

Enough noodling for today.

Red Letter Day

I received only the second letter from my blessed donor. As you might recall, he was a 22 year old Yeshiva student in Israel at the time he saved my life a year ago. That is all that I know, but I may have the chance to learn more soon. After 1 year we can possibly exchange information, photos, and even meet. More on that later.

For now let me reread  his lovely note from the holy land.

The first letter came 1 week post transplant, the second a year later.

It speaks for itself.

Dear Recipient,

I am excited that the year from the donation is coming to an end. I
apologize for not responding properly to your e-mails. I usually do not
have access to e-mail making it difficult for me to respond. I have
received all of your e-mails and I greatly appreciate you keeping me up
to date. I have learned from them a lot. I was touched by your sharing
of the personal things that were happening in your life. I look forward
to speaking with you and knowing who you are.

In the meantime, the major event in my life this past year was that B"H
I got married six months ago to a wonderful women. My wife's father, who
passed away before I met her, was also a bone marrow recipient. My wife
was very touched by the fact that I had been a donor.

Although I haven't always responded to your e-mails you have been in my
thoughts and prayers. I prayed for you at the Kotel on my wedding day.

With blessings for a complete recovery (refuah shleima),

Your Donor

Opening night at the Artist's Reception, Laguna Beach Festival of Arts

Will and Laura at the Laguna Beach Festival of the Arts

Edgy provocative art all done in bleach. Perfectly rendered. See his meticulous take on Durer's Four Horsemen of the Apocalypse. done in clean caustic bleach, of course. Or catch his stinging social satire in Three Vices.  And there's more, much more. All of it uncompromising. 

High contrast to the decorative and beautifully designed glass work and pottery and lovely landscapes and smart photographs that make up the bulk of the art by the other Laguna area artists.

Is Orange County ready for Will Koffman? Time will tell.

Last year I was in hospital. This year I was saying no to free wine and hors d'oeuvres, enjoying a festival devoted to the fine arts. A much better situation.

Chance to do a CLL Interview in Costa Mesa and make a difference, give to charity, and get paid to boot

What follows is a letter I received about a chance to do an interview on CLL.

If you have CLL and live in OC, please consider it. I want big pharma to hear from us and not be drowned out by the NHL group, as much as I wish them every blessing. 

This is our chance to have the ear of the big company and maybe they will hear what we want. I know what I want to tell them, but I won't prejudice their study by sharing it at this time.

Plus for giving them an earful, you get paid $150  and I get $25 that I will be giving to charity. Win. Win. Win.

Here's the letter:

Dr.Koffman,

Medical Data Concepts, a well-established marketing research consulting firm working exclusively in the health care industry is conducting a study for a major  pharmaceutical company on the treatment of  Non-Hodgkin’s Lymphoma and Chronic Lymphocytic Leukemia. The topic of the study is patient information for CLL and NHL patients.

 

The purpose of this study is to gather information/opinions from the patient. Participants will not be asked to take any medication, nor is the intent to influence the prescribing of any particular product.  All responses will be treated confidentially, and will be reported in aggregate only.

 

In order to get direct feedback from patients we would like to enlist your help.  Over the next 3-4 weeks could you please ask the members of your CLL support group to call us to discuss participation in this market research study?

 

The interviews will be conducted in person at Assistance in Marketing in Costa Mesa on July 20.

 

Please have them call prior to these dates to answer some preliminary questions.

 

We have attached a letter you can give to the members explaining the project and providing a toll-free number for them to call for more details.

We appreciate your assistance with this important project. For every patient that completes the survey, you will receive $25.

 

The CLL patient will receive $150 for their participation.

 

If you have any questions regarding this project, please call us at 1-800-868-4206 and ask for Robin.

 

Thank you

 

Jill O’Reilly

Director of Research information Services

 

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2275 N. Rand Rd.  Palatine, Illinois  60074

 

 

It's my birthday too

Re-birthday Picture 1 year old

Today is my re-birthday, a second birth. Even though I don't have a donor cell left in my body, and at times I feel like a poser, I did roll the dice, and the visiting stem cells allowed my big time chemical cocktail to cause my cancer to disappear. Let's hope it's forever. Let's hope that their brief visit in my body was long enough to completed the search and destroy mission.

I feel the odds are good. A shot of chemo usually doesn't last this long.

If not I just plan yet another re-birthday. 

But today is a time to celebrate. And not just because I'm a proud Canadian.