The cancer survivors park

Marilyn and I ran across a sculpture garden devoted to cancer survivors in a park near downtown Santa Rosa, California. It's properly known as the Richard and Annette Bloch Cancer Survivors Plaza at Fremont Park, and it was an unexpected pleasure and an inspirational place.

After spending some time there, I found myself wondering why there aren't more places like this, tangible art installations where those of us fighting cancer can take time to reflect and find encouragement. And then, lo and behold, I looked it up on the internet and found that there are 24 of these in the U.S. and Canada, all sponsored by the R.A. Bloch Cancer Foundation. It turns out that Richard Bloch, a founder of the tax service H & R Block, was a lung and colon cancer survivor who died of heart failure in 2004 at the age of 78. His foundation does more than encourage public art, but it is the art that captures the imagination in a way that words sometimes can't.

The park does contain some pretty good words, by the way, which can be found on numerous plaques offering spot-on cancer-fighting advice. One grouping of plaques is known as the Positive Mental Attitude Walk.

So consider visiting a cancer survivors park near you. Below are some photos we took in Santa Rosa, just in case you can't make it there. All the parks have the same sculpture by Victor Salmones, depicting people of various ages entering -- and emerging from -- the challenge of cancer, represented by a series of distorted squares. You'll see me in one photo, ready to leave the last square; I have also updated my photo at the top of the blog to reflect the way I look now -- namely, hairless. 

Speaking of surviving cancer, I have now completed three rounds of R-EPCH, which came on top of two rounds of OFAR. The tumor burden is vastly reduced; during my last treatment there was no threat of tumor lysis and no significant increase in LDH. It appears that the chemo has done most of what it can do. Nodes are still palpable under my arms, but none can be felt in the abdomen. That doesn't mean they're not there; to see where things stand, a PET scan may be in order soon. It's likely there will be between one and three more rounds of chemo, followed by a maintenance drug to get me past January 1, when new health insurance kicks in and provides coverage for a stem cell transplant. It looks like I will be having an interesting year; may yours be as dull as possible.

 

"There is no such thing as false hope for a cancer patient. Hope is as unique with each individual as a fingerprint. For some it is the hope to make a complete recovery. But it might also be the hope to die peacefully; the hope to live until a specific event happens; the hope to live with disease; the hope to have their doctor with them when needed; the hope to enjoy today." -- Richard A. Bloch

Red cell rebound

I knew I was feeling more energetic recently when, after going up and down the stairs moving a dozen cardboard boxes, I didn't feel especially winded.

Contrast this with not all that long ago, when just getting myself up the 14 steps was challenge enough.

My latest CBC confirms what I suspected -- some six weeks after finishing Round 5 of bendamustine and rituximab, my red cells have recovered to the levels they were at before marrow impaction by CLL forced me into chemo.

With a hemoglobin of 13.3, I feel like a new man, or at least not an old one. After living for more than a year with steadily declining red counts that put me in the 7s at one point, I realize now the subtle effect that growing anemia can have. At a hemoglobin of 11 I can feel almost normal, but lacking the energy edge of 13. At 9 I can function, but need a nap and am loathe to take on physical projects. At 7, well, it's a strain to climb the stairs.

Platelets are at 134, about where they were when all this began. Absolute lymphocytes are at 1.8. Lymph nodes are significantly reduced and my weight is in the low 170s, where it has not been in two decades. I look a lot less pregnant -- sorry folks, no alien baby will be bursting forth this year.

So, my initial verdict on BR is that it worked pretty well on me. Considering that I am ten years into this fight and have had multiple treatments, it was reassuring to see that I responded and responded well.

I'll be paying a visit to CLL expert Dr. Thomas Kipps next week and will be curious about his take on my response, as well as the state of my abdominal lymph nodes via a thorough physical examination. 

I'll also ask him about possible maintenance treatments and/or treatments at relapse, including what may be available in clinical trials. One thing I am certain of is that I do not want the disease to get out of hand as it did in 2012; B-R has not been easy and there is no guarantee that I will respond well to it in the future. 

My local oncologist is floating the idea of Campath, aka alemtuzumab, for maintenance. He's aware that it doesn't do much on nodes larger than 5 cm, which I may still have somewhere. And since bulky disease has always been my problem, I am a little loathe to go this direction.

What's more, Campath is severely immunosuppressive, killing off T cells as well as B cells, and leaving some CLLers with all the immunity of your average AIDS patient. I have had pretty good quality of life when it comes to avoiding nasty infections, and I am not disposed to open myself up to juggling pneumonia, shingles, and who-knows-what-else.

The extensive rash I wrote about in my last post has finally gone away with the help of a two-week course of oral dexamethasone. The biopsy came back as "hypersensitive dematitis" with no sign of CLL infiltration. Which is what I figured before the dermatologist punched holes in my skin.

My oncologist thinks the rash might have been an allergy to Rituxan, perhaps less so an allergy to bendamustine. But no one knows for sure. 

So I have one last question for Dr. Kipps: Is it worth doing the last round of B-R, and doing it more than a month behind schedule? My tendency is to go for it, if this is my best shot at using it to nail down the best remission possible, perhaps without the R, just to stay on the safe side of any possible rash. 

Meanwhile, I still have more boxes to move. It's the simple things in life that count and it's good to feel like a human being again.

Hurry up and wait

Those of us with chronic lymphocytic leukemia are familiar with the concept of "watch and wait," which means being a patient patient while your disease take its course. This can involve a certain degree of dis-ease (pun intended) as you and your doctor lurk about, waiting for just the right moment to begin treatment, should that become necessary. 

Of late I feel like I've been experiencing something called "hurry up and wait," which is what you do when your disease definitely needs treatment but you are waiting for the best treatment option to make itself available, which is supposed to happen Any Day Now.

"Watch and wait" drives Type A personalities a little bit crazy, which isn't really a problem for me. "Hurry up and wait," on the other hand, can be a bit of a challenge.

In my case, since the end of the Revlimid era last November, the CLL has taken a turn for the worse, compounded by departing doctors, insurance runarounds, and potential clinical trials that have proven to be trials in more ways than one. I've written about some of this, and am here to provide a little update now.

The good news is that Any Day Now there should be an opening in a kinase inhibitor trial with my name on it. I've been waiting on two such choices for a while. 

The first, which I'll call Trial One, almost came to fruition six weeks ago. In fact, I was all dressed up for extensive testing for a trial slot, only to arrive and find I had no place to go. Seems an "adverse event" in the trial of said inhibitor had just raised a big red flag at corporate headquarters and further patient accrual was being put off. All this happened in real time as I sat in my hotel, or in the Vietnamese restaurant adjacent to my hotel. Eventually I was sent home with the knowledge that while Trial One was probably out for the forseeable future, there was a Trial Two that would have an opening in another month, give or take.

And, so, here I wait at home, far from pho, disappointed but cautiously optimistic that I might make it into the second trial, in which no adverse events have been reported to date, at least that I know of.

You could argue that I am lucky the adverse event in Trial One didn't happen to me. It was an unexpected case of severe tumor lysis, apparently, which means massive, immediate die-off of leukemia cells that, uncontrolled, can damage the kidneys. Trials are called trials for a reason, and as much as we like to think of ourselves as intelligent, forward-thinking patients, we are also in fact risk-taking lab rats when we sign on the dotted line. So maybe I dodged a bullet by not making it into Trial One, which would not have been so disappointing had the principal investigator not been so genuinely enthusiastic about its potential to help me.

Now, I could go into names of drugs and names of doctors here, but what I have heard is second-hand, and I'm not in the business of reporting such things as absolute fact. This is a blog, not journalism, and there is a huge difference between the two that I still hold somewhat sacred, having worked in the news business back when double-checking the facts counted for something.

To keep my CLL at bay while waiting for trials, I have been taking huge pulsed doses of steroids every few weeks. My new local hem/onc calls it the "myeloma dose" -- 40 mg of dexamethasone daily for four days. The advantage is that it does reduce the nodes temporarily, and it has bettered my platelets a bit (they're now at 101) while perhaps also keeping my hemoglobin steady in the low 9s, which isn't so awful once you get used to it. Plus the steroids leave your system in under six days, and the prophylactic meds (antibiotics, antivirals, antifungals) also leave quickly, meaning that you can be ready to qualify for a clinical trial without a long delay.

Since 2007, I've had a fair amount of experience with steroids, about which I plan to write at some point soon. I think they're a good but problematic stop-gap, and nothing more. Steroids are a potentially useful component in any "hurry up and wait" strategy, but they're no way to live.

The late Dr. Terry Hamblin once pointed out that in end-stage cases he would prescribe steroids once a month just to keep the patient going, and I can see how, when all else fails, it beats the alternative. 

Fortunately, we now have more alternatives, such as the kinase inhibitors, as well as Revlimid for those who can tolerate it, not to mention the supercharged T cells being studied at such places as the University of Pennsylvania.

Which brings us to the real game to win here. I call it "slow down and wait." By that I mean, allow science to outpace your CLL by just enough that it can save your life. I feel like I'm cutting it close on this one, but there really is no other choice, except to go marching off to the Relapsed-and-Refractory Factory and await the end.

Call me irresponsible, accuse me of "dithering" in the face of my own unplanned obsolescence, but I am not comfortable with following a conventional wisdom that can change from one day, or week, or month, to the next. In CLL, action can mean progress, but it can also mean the illusion of progress. Doing something just to do something may not always be the most rational course. So I often find myself taking my chances with inaction.

"Slow down and wait" involves a certain amount of powerlessness, of accepting things you probably cannot change, among them the possibility that Fate might throw something at you, for good or ill. By making wise (or just plain lucky) treatment choices you might be able to control the disease long enough to buy more time, but there are no guarantees, since the disease can always take a turn for the worse at a whim. As to the pace of scientific progress -- and the availability of its fruits in your locale -- that is all luck, pure and simple. 

So far, I've been fortunate that science has done more since my diagnosis in 2003 than I, or perhaps anyone else, might have expected. My disease behaved decently until last fall, and now has settled into a new plateau, worse than it was but not getting worse, at least yet.

And Any Day Now, well, I hope to be trying a new treatment that might just control this thing. So I'm hurrying up and waiting in order to slow down and wait some more. Welcome to CLL.

Some good news . . .

It looks like things may be working out for me after all, both in terms of doctors and treatments. After enduring the perfect storm of departing doctors, booming disease, and insurance headaches described in recent posts, there may indeed be calm in the eye of the hurricane. One might even say that change can be good, even though the circumstances leading to it have been just about as bad as I could imagine.

But I have learned not to count my chickens until they're in the house bawking, so the fewer details I go into now the better. In about another month, if all goes as I hope, I may have some good news to report here. In the meantime, I'll just shut up and deal with pressing matters at hand. Thank you all for your love and support and advice.

Part of the CLL journey is luck. . . . Luck in terms of the disease, luck in terms of its responsiveness to treatment, but also luck with being there at the right time when the right person or thing comes along. You may be less lucky in one area than another, but what counts is, somehow, that you muddle on through and also create opportunities for luck. 

Even in the darkest hour, do not stop trying, and do not be afraid to shoot for "yes" when only "no" seems possible.  When your life is at stake, there are no excuses for not going "all in" to find opportunities, even if it seems you don't have a lot to go "all in" with. You've got yourself, and you've got your loved ones, and that is everything. If you don't think you're worth the fight, or that they're worth the fight, then you have bigger problems than CLL.

I'm in my ninth year of dealing with chronic lymphocytic leukemia. I've changed my mind about some things over time, but two things seem as true to me today as when I started: One, deal with your emotional baggage going in, or start working at it then and don't stop until you have reached a clear place where you can get your game on and fight most effectively. Two, never panic. Do not let fear dictate rash action, no matter how pressing the need for action may seem. 

I'm going to add a third bit of advice now: Don't be afraid to put your eggs in more than one basket (I must have chicken on the brain today). Cast around, Look everywhere. Opportunity comes to those who seek it, and my guess is that success will ultimately come to those who are willing to give up everything (including time and money) for it.

And please keep in mind that you do need a good doctor, or good doctors, to help make things happen. You can only go so far alone, and there is a big difference between feeling that you are carrying your doctor, or that your doctor is carrying you.

Farewell, Terry Hamblin

The CLL community has lost one of its best and truest friends, Dr. Terry Hamblin, to his own battle with a different cancer. 

Hamblin, one of the world's leading chronic lymphocytic leukemia doctors and researchers, retired from most of his duties in the U.K. about six years ago. He could have gone sailing, or found a lucrative post with a pharmaceutical company, or disappeared into a quiet, well-earned country life. Instead, he rolled up his sleeves and went to work where he was needed most, using new internet tools to help CLL patients worldwide.

I began my blog in November 2005 and Terry's came on line just a couple of weeks later. Through his blog and his inexhaustible contributions to the ACOR CLL List, not to mention personal e-mail, Terry answered thousands of questions about the disease and its treatment. He freely gave of his lifetime of experience, even to the point of exhaustion. Over at ACOR they established something called The Professors' Posts to archive his answers so the same question did not have to be asked of him again and again (the plural in professors includes another invaluable ACOR contributor, Dr. Susan LeClair).

I called him Terry, but I always felt a little awkward about it. It's sort of like calling God "dude." He signed everything "Terry Hamblin," in the matter-of-fact way that was his trademark. When he got rushed, he tended to transpose the letters in "the," and there was always a place in my mind where I saw him as "Teh Professor." And I mean that respectfully and lovingly. In a world where our written words -- in e-mails, blog posts, discussion forums -- have become our main form of communication with one another, there are little tics, little traits that you notice.

Another thing I noticed was that Terry was always honest and direct. He told you what he thought, and he told you if he didn't know something, and he never made an effort to sugar-coat anything. In other words, he treated us patient rabble like people, like equals,  like adults.

"We [doctors] really don't have the means to keep you alive for longer than about 12 years," he once wrote to me. It wasn't what I wanted to hear, but it was the truth as he saw it. That's one thing you could count on hearing from Terry Hamblin.

Terry was a bit old school. He believed in the scientific method. He had seen too many things come and go to jump on the latest bandwagon. He wasn't the cheerleader type. He liked hard evidence, and so he provided a grounded, conservative perspective as new treatments and tests unfolded. This didn't always make him the most popular voice out there, but you could always rely on him for sure and steady reasoning.

I never detected an atom of pomposity in the man, and this is no small feat in a world in which "M.D." is sometimes taken to mean "Medical Deity." Terry didn't need to have his ego stroked, and while he was justly proud of his many accomplishments, he remained, as far as I could tell, a humble, uncomplicated soul. It was as if he didn't see the invisible line that we patients see between doctors and ourselves. To him, we were all just people, and when he began his struggle with his own cancer, we CLLers came to see the full scope of his strength, his vulnerability, and his humanity. Terry was now on the journey that we had been on, experiencing the travails of cancer that go beyond medicine.

Over the years, I tried not to bother Terry too much, knowing how many inquiries he received, but I did correspond with him from time to time. He once went out of his way to discuss my case with some of the best minds in U.K. hematology, a favor I did not expect nor ask for, but for which I was grateful. He read my blog sometimes and occasionally commented here, which made me feel like maybe I wasn't a complete idiot.

Readers of his blog know that Terry Hamblin was a devout Christian. But he not only talked the talk, he walked the walk.

Last November, Terry wrote something that sums up his character in far better words than any I can offer:

I had a weepy day yesterday as I contemplated the things I had left undone. At the end of Schindler's List, Liam Neeson has a scene where he looks at his luxury car and his gold ring and thinks of how many more Jews these could have bought. "I could have done more," he exclaims.

That is how I felt. I told this to Dr John when he visited and he reassured me. None of us can ever do enough. We mustn't reproach ourselves.

Today I am much more cheerful. I went out for the first time in 2 weeks and bought some flowers for my wife. The Scripture tells us not to be weary in well-doing.
 
Terry never truly tired of well-doing, and he left a world of good works in his wake. There is no better testament to a life well-lived. He will be sorely missed in this little corner of Arizona, and by his friends everywhere across the globe.

Benediction

When my brother Rick was in Vietnam, a grenade went off nearby. It knocked him out. There was shrapnel in his skull.

He could see himself floating above his body. He saw loved ones around him and felt a profound sense of peace. It was, he said, the most wonderful thing he’d ever felt. (This was the mid-1960s, before reports of near-death experiences were publicized in books and the media.) It was, Rick said, the last thing he expected to happen.

And then he was awake. A paramedic had saved his life.

“Why did you do that?” my brother asked, after which he slugged the medic as hard as he could.

* * *

Rick died Friday of the stroke that felled him two months before. He was not a religious man, but the near death experience stayed with him and made him unafraid of death. Years later, after a motorcycle accident, he had the same experience, saw the same things, until he was snapped back to life.

Being unafraid of death does not always make it easy to say goodbye, of course. Fortunately, there was enough time after the stroke for the process to work its way through, and for moments to be shared. Heavy, meaningful things were said, but mostly it was just the joy of companionship. We looked at old photos and talked about old times, which became more difficult as he lost his ability to speak clearly. And he wanted to know what Marilyn and I were up to, no matter how unimportant our activities seemed to us.

We were not present for the final days of his decline. His wife, Mary, said he had begun to see his twin. Rick's twin brother was stillborn and now, somehow, Rick saw him there in the living room. What he looked like, what he communicated to Rick, I do not know. How much of the transition to death is illusion, how much is reality, I also do not know, except to say that it is a mystery that befuddles the living.

* * *

Rick confided in his wife the most, of course. At one point he told her that he had wanted to be there for me when I died, and he was sorry that, instead, I had to be there for him.

I came to realize that, somewhere in the back of my mind, having CLL had created the expectation that I would die before everyone else in my family. Not just before those who are younger, which would be expected anyway, but also before Rick, who was 11 years my senior, and even before my father and stepmother, who are now in their 70s.

Not only was this my expectation; it was obviously Rick’s as well, and perhaps is shared by other people I am close to. It’s not something they talk about, just something they assume.

This assumption conflicts with another expectation that I have, which is that I will manage to muddle through thanks to new drugs like Revlimid, and perhaps have a reasonably normal lifespan after all.

Time, which I am aware is ever-short, even for the healthy, will tell.

And if Rick’s near death experiences are right, he’ll be there for me when I die, after all -- just not on this side of the curtain.

My six years of CLL, and six things I’ve learned

September 3 is here, the sixth anniversary of my big doo-doo surprise. It was on this date in 2003 that I awoke from a dream in which the room was spinning. It turns out that the room really was spinning, which meant a visit to the ER, which was followed after a couple of hours by my diagnosis of chronic lymphocytic leukemia. I was told it was a “good cancer” and sent home.

The room, as it were, has not stopped spinning since.

I was going to title this post “Six years of this crap,” but I think it’s best to look back with a more even temperament at some of the big screaming bullet points that I have run across. These are things that may be the most help to those of you who are waking up into your own CLL bad dreams.

Since 2003 I have come some distance in my understanding of the disease and what it means to cope with it. Time is a teacher, and I’m sure it has a lot more to throw my way — at least I hope it does, if you catch my drift. At six years in, I’m in my CLL middle age, both in terms of disease progression and knowledge. When it comes to the latter, I'm no longer wet behind the ears, yet wise enough to know that the learning curve goes on forever.

Here are some things I’ve learned, sometimes the hard way. They may represent a change or an evolution in thinking over some older posts in the blog. They are the truth as I see it today:

1. CLL is not the same disease for everyone. The “CLL is an indolent disease/good cancer” monster has to be staked through the heart every time it gets out of its coffin to suck your blood. It is the old, cobwebby way of thinking about CLL. Wipe those cobwebs from your eyes, unless you enjoy being mesmerized while your life drains away.

Some of us have relatively mild CLL, some of us don’t. Some of us respond really, really well to easy, breezy treatments, and others of us barely respond to nuclear chemo. This is because, for all practical purposes, we don’t have the same disease. A dog is a dog is a dog, but not all dogs are alike: Paris Hilton would look a lot more chewed up if she were carrying around a pit bull instead of a chihuahua.

Figuring out what kind of CLL you have does not involve reading tea leaves, poring over entrails, or consulting the shell of the prescient tortoise. It’s a matter of looking at the results of the tests available — IgVH mutational status, ZAP-70, FISH, CD38 — and at your clinical history (how fast your nodes are growing, how quickly your lymphocyte count is doubling, how far your hemoglobin and platelets are dropping). When I was diagnosed, the only readily-available test was CD38, so a lot has happened in six years. If you want to know what you’re dealing with, get your tests done.

2. See a a CLL expert (or two) at the very outset. Ol’ Doc Lippencot, highly regarded as she is around these parts for curin’ breast cancer and lice and possum infestations and such, didn’t know much about CLL. This is often the case with the local doctor, whose stock in trade is usually not going to be a disease that affects almost nobody.

And while patient networks and educational websites are excellent for moral support, learning about case histories, and keeping up with the latest research news, they are of limited medical expertise. This is because they are filled with seekers and guessers such as yourself, not to mention the occasional insufferable blowhard. Some of these people are downright brilliant, some of them are extraordinarily helpful. But in the final analysis they are, like yours truly, amateurs — what the dictionary defines as “lacking the skill of a professional.”

Which brings us to the professionals. Experts live and breathe CLL and have seen hundreds of people just like you, with all the variants of your disease. They have a clue. This does not make them infallible. Having consulted a few, I can say that they don’t always agree. Just as painters see the world differently, so do those who practice the art of medicine. So see a couple of the big names — or even a few, the worse your case is — just to get a consensus, or maybe that much more confused.

Our CLL experts are a great bunch — many of them are approachable by e-mail — but they’re not miracle workers and they’re not gods. Sometimes they run out of things they can do to save your life. Dr. Terry Hamblin told me in an e-mail once that, the way things stand today, doctors can only keep me alive for so long. I forgot how long “so” was — it appears to be at least six years — but the point was well taken, which leads me to:

3. The battle has a beginning and an end, and you need to be ready to fight. For those of us who don’t have indolent “goody-two-shoes” cancer, the day will come when we beat it or are beaten by it. The opening round came when that first mutant CLL clone got out of your own personal Pandora’s Box. The final round will come when it comes, and for many of us younger patients it will probably end with a transplant, win or lose (or there can even be a draw, of sorts).

Obviously, you need to be as prepared as possible. That is why patient education is important, getting the lay of the land is important, staying up with truly useful news is important, staggering your treatments intelligently is important, doing all the strategy and tactics stuff is important.

And that is also why learning to cope emotionally is important, and why this battle hinges at its heart on more than science and medicine. Healing is a big, mysterious thing. Books have been written. Bullshit has been blathered. But there is a lot about the mind-body connection that we don’t understand. Well-respected, level-headed doctors see “medical miracles” during their years of practice. I believe your chances of healing are better if you put your heart and soul into it, and the evidence seems to back me up.

Emotional preparedness can also help you cope with the inevitable surprises and slip-ups, the disruptions and disappointments (and occasional triumphs) that come with fighting cancer. It is a rough journey, a test of your faith and your stamina, something that demands that you get your inward act together.

You can walk out into the ring with all the technical skills, having read hundreds of papers and abstracts, having consulted every expert doctor within a ten thousand mile radius — but if you don’t learn to float like a butterfly and sting like a bee, if you can’t get in your groove, make knowledge and soul work together, you are fighting with one hand tied behind your back.

4. Be a pain in the ass. No, I don’t mean be a cry-baby or a whiner or a ninny (take that blood draw like an adult!). I mean learn to stand up for yourself in medical settings, learn to question things if you are uncomfortable, learn to say “No” and “Are you sure?” Do not be railroaded by doctors, office staff, or well-meaning family or friends. Be as diplomatic as the situation allows, but keep in mind the words of Teddy Roosevelt: “Speak softly and carry a big stick.”

This is where those emotional/intuitive clues come in handy. If someone says, “This is right,” but it doesn’t feel right, honor that thought. Float like a butterfly, and whack! with that stick. And the bigger the thing, the bigger the pain you must be. Do not stand on ceremony or save face; it will be at your own peril. The face you save could be you own.

5. You cannot predict the future with certainty. So far, CLL has humbled the great minds of medicine, so get your humble on. Nobody can predict the future. Nobody can know an outcome for certain. Sure, a lot of cases follow the conventional wisdom; things often, unfortunately, go by the book.

But there are exceptions. Let me tell you a story:

A patient has a sudden relapse, finds herself refractory to every therapy, has to live on transfusions. Like a Greek chorus, there is whispering offstage: “She should go into hospice.”

And now, two years later, like some mighty Greek goddess who has triumphed in an epic battle, she has survived a sudden transplant and is doing pretty well, thank you.

Bad things often happen in CLL, but good things can, too. This is not an article of faith, it is a matter of medical fact. There really IS hope, tempered as it is by this thought:

6. In the end, it often comes down to luck. Dr. Allan Hamilton is a respected neurosurgeon, and the author of a book called The Scalpel and The Soul, and his number one piece of advice after decades of practice is this: “Never underestimate luck — good or bad.”

The more I see of CLL, the more I believe this to be true.

Why do some people live and some die? My ever-practical younger brother puts it this way: “When your number’s up, your number’s up.”

It’s called Fate. This is why the best-prepared sometimes fail, why the least-prepared sometimes live. That’s no reason not to care, no reason not to make the odds as much in your favor as you think you can make them.

But nobody gets off this planet alive. Dr. Hamilton has a blog, and he talks rather poignantly (tearjerker alert) about a couple who drive up a mountain to share a glass of wine in the twilight of life.

So enjoy wine and a sunset, whatever day it is for you. Life is not all about the battles we wage to stay here. It is about how we live it while we are blessed to be here.

That can be easy to forget when you’re in the trenches battling cancer. But with time and wisdom, we can learn to savor what life is about despite the challenge it has thrown at us. And life can become all the more sweet in the face of the dangers ahead.

Nobody said beating CLL was going to be easy, but nobody who knows what they’re talking about says it can’t be done.

So here’s to six more years (come to think of it, I think the number “12" was in Dr. H’s e-mail somewhere).


With this post, I am stepping back from the blog for awhile. I have some fighting trim to get into. There are other things in life I must attend to. Over the years I have said a lot, but sometimes there is wisdom in being quiet and listening. I promise to post every few months, and I will let you know if I encounter any big health emergencies or breakthroughs. In the meantime, no news is good news. Take care, and stay as healthy as you can.

The dog days of August

Anyone who has Googled "chronic lymphocytic leukemia" has run across references to the disease in dogs and, more rarely, cats. If you give Fido some chlorambucil, he goes on merrily chasing his tail, usually for a normal life span.

Recently I received a phone call from someone who read my letter to the local paper in which I explained that I have CLL and that I support health care reform. The caller left a message on my answering machine. She said she supports reform also, and then began to talk about her dog, which was recently diagnosed with CLL. If it would not be a bother, she asked, would I mind calling her back and telling her a little bit about the disease and what might be done to treat her dog?

When Marilyn and I heard the message, our reaction was the same: laughter, of the disbelieving kind. I don't mind talking about CLL to fellow patients, or to my neighbors, or to a complete stranger who has some interest in the disease. But I'm not a veterinarian.

My gut level response, to my surprise, was anger. I love animals, and I like dogs, but I have seen too many friends and acquaintances die of this disease. I have seen too many struggle with impossibly difficult choices. For every great remission I have seen great disappointment. I have spent almost six years struggling with CLL, not always successfully. If I thought the last six years were bad, the next six promise to be worse. So pardon me if I don't have a lot of energy left over to counsel people whose dogs have leukemia.

Sometimes I think I'm being a little hard-hearted about this, but I cannot bring myself to call her back. I know she means nothing by it, that she's probably not aware that a CLL patient might develop some emotional baggage after awhile. Is she being a little insensitive? Or am I being oversensitive?

I empathize with her and her dog, but all I want to say to her is "Use your freakin' Google."

Am I right or am I wrong?

Beyond living "la vida leuko"

The house is a mess. I don't have time for much of anything except what absolutely must be done, which explains why I'm not blogging a lot lately. Marilyn and I are living our lives inside a turbo-charged hamster wheel consisting of treatment for CLL; renovating the house and paying for renovation of the house so that we can sell it; and keeping our business ramped up to pay for as much of the above without going into even more enormous debt than we already find ourselves in (Thank you, Bernie Madoff! May you live to be a hundred -- in jail, of course).

It’s a three-ring circus with lots of elephants plotzing around. Sometimes the building shakes. And yet this morning, as I poured a cup of coffee into my Far Side mug in the beautiful new kitchen I won’t own much longer (we hope), I felt a sense of calm and optimism that I had almost forgotten had once been part of my life.

Call it a flashback to pre-CLL, when the mere weight of the world hung around my shoulders -- as opposed to the mere weight of the world plus the prospect of death and how to avoid the latter for as long as possible.

Here I stood in a half-done house, enjoying what for us Arizonans is a delicious morning of overcast, drizzly, and cool Memorial Day weekend weather. I could look through the mess around me and see that there was a future somewhere. A move sort of impending, an adventure even, a next step that despite being in large part about CLL is not all about CLL.

The CLL part, as I have alluded to in this blog many times, has much to do with the health insurance I have. Thank God I have it, but it’s Arizona-based only and it’s restrictive and won’t pay for a stem cell transplant when and if the time comes. So unless something miraculous finally happens in Washington requiring insurers to cover people with pre-existing conditions, I will have to follow the four winds to a place where there is a high-risk insurance pool that will take me. Let’s see what moves faster -- health care reform or the sale of this house. I am hoping for both by the end of the year.

The non-CLL part has something to do with getting one’s life back in order. A lot of things have been let slide around here since I was diagnosed in 2003. Plans and projects shelved, everything deferred to matters of disease and, gradually, economics. Spin it as much as I like, it’s basically been a depressing, unhappy time. After almost six years, I have decided that you can’t truly make a silk purse out of the CLL sow’s ear. Perhaps the mistake is in trying too hard.

Now things are changing. There are physical signs of it wherever I look. And maybe as time goes on I have developed less propensity to worry. Maybe I’m sick of living la vida leuko. Maybe standing in a new kitchen amid old debris symbolizes the ability to get things done, to get moving, to somehow take a powerful step beyond the inertia that followed the gut-punch of a cancer diagnosis.

Who knows, maybe I’m just responding to negative ions in the atmosphere. I’m not expecting the CLL road to get easier. I am just hoping that my ride along it -- Marilyn’s and mine -- might be somehow less bumpy, perhaps more focused on the scenery. It’s a beautiful world, really. Sedona is a beautiful place, but I have lived in beautiful places before.

Another one, I hope, awaits. Physical, metaphorical, lyrical. I’ll take what I can get.

Perhaps, I hope, I have taken a step and am just a little bit there already.

Bernie Madoff screws leukemia patient

That would be me. I have been debating whether to write about this. I try to stick to chronic lymphocytic leukemia in my posts and up to now my financial situation has not been especially germane. But I have just lost my savings, and it is important to remember that not every aspect of the disease is medical.

Cancer changes lives in many ways. It refocuses energies -- mental, emotional, spiritual, financial. It transforms everything, from the mystical to the mundane. That mundane world includes money. Cancer can change your career, deplete your bank account, eat you out of house and home even as it eats away at your body.

Bernie Madoff, like a metastasizing financial tumor, has not helped matters of late.

Madoff is the former NASDAQ chairman whose Bernard L. Madoff Investment Securities LLC stole some $50 billion in history’s largest Ponzi scheme. I lost $65,000. That may not sound like much to Madoff, or perhaps even to you, but it meant a lot to me.

Ironically, when it comes to leukemia and lymphoma, I have something in common with the Madoff family. Madoff’s nephew Roger died of acute myelogenous leukemia in 2006 at the age of 32, shortly after he wrote a book called Leukemia for Chickens. His son Andrew was diagnosed with mantle cell lymphoma in 2003, which prompted Bernie to donate millions of dollars to the Lymphoma Research Foundation. My official diagnosis is CLL/SLL: chronic lymphocytic leukemia/small lymphatic lymphoma. In my more poetic moments I like to think that perhaps Bernie donated my money to efforts to beat our common beast.

Probably not.

* * *

Madoff and my family go way, way back. His wife, Ruth, went to high school with my stepmother, Cynthia, who is quoted in today's New York Times. (Cynthia is like a real mom, and is a good friend, and I love her dearly -- even when she beats me at Scrabble.) Cynthia's parents owned a small, rustic summer resort in New York's Catskill Mountains called Sunny Oaks; during the winter they lived in the same Brooklyn neighborhood as Ruth’s parents, Sol and Sarah Alpern, with whom they became friends.

The Alperns were regular guests at our hotel for two decades, arriving after Memorial Day each year and staying until Labor Day. When I was in college I waited on their table. Later, my Dad and Cynthia inherited the hotel, including the Alperns, and eventually Marilyn and I helped manage the family business and we became hosts to the Alperns. (Sunny Oaks finally closed in 1999, a relic of a Borscht Belt era that had long since passed. The Alperns had passed away by then, too.)

Sol and Sarah were easy guests. They never complained, and although they took one of the best rooms in the house, they weren’t fancy people. This wasn’t a four-star place. It was basically a collection of rickety old wooden bungalows that we dubbed “cottages,” and it was, as they say in Yiddish, haimish: homelike, friendly, folksy. The guests were treated like an extended family. And we took good care of the Alperns, even when Sarah got old and started to pee on cushions in the lounge. We’d mutter something like “Sarah Alpern is going senile” and just turn the cushions over. (This sort of thing explains why Fawlty Towers is my all-time favorite TV program, but I digress.)

It was Bernie Madoff who eventually gave us all the golden shower. But for the longest time, he was a distant acquaintance who professed nothing but gratitude for the way we took care of his in-laws. Sol, by the way, was an accountant. He knew people on Wall Street, certainly through Madoff and his circle, and he was instrumental in spreading the word at the hotel when good business opportunities came along.

Which, to make a long story short, is how we all ended up with accounts in Madoff. My history with it goes back almost 20 years. Nobody ever questioned its legitimacy. (It probably was legitimate in the beginning; Madoff was a pioneer in electronic trading back when MS-DOS was the world's most popular operating system.) Statements from Madoff came promptly and looked proper, providing endless lists of transactions. When Marilyn added it all up at tax time, it seemed entirely believable. We often got an annual return of about 10 percent or so, which actually declined in recent years.

Our theory about that decline was that ours was something of a nuisance account. We kept removing principal and were small financial potatoes, not worth any special effort on the part of the traders (or what we thought were the traders). Indeed, we were allowed to start our account with $50,000. This was in the early days -- a favor -- before Bernie decided you needed two million bucks to get in.

Way back when, our little hotel turned out to be fertile ground for investors for Bernie. Almost everyone in the family had a Madoff account. Accounts radiated out through the guest population, through our distant relatives and the distant relatives of guests. All told, I can think of a dozen people I know who are, collectively, out at least $5 million, and I am sure those people know another dozen people.

I was financially irresponsible, unlike a number of folks who let their money sit in Madoff and grow and grow. It turns out that irresponsibility has its rewards because at least I got to spend most of my money. I know people -- not rich to begin with -- who are essentially broke.

We’re not talking about the Palm Beach set that has grabbed much of the media’s attention. This is the Brooklyn-Far Rockaway-where-Madoff-grew-up set, the middle-class-people-who-worked-hard-and-saved set. I know people who lost in the hundreds of thousands, whose money represented their life’s work as well as inheritances from their parents. Some have careers or good equity in their homes or are old enough to be receiving social security or a pension. Others have less.

One cousin wrote that when her checking account is depleted in February, “I have nothing.”

* * *

I almost closed my Madoff account earlier this year. (Talk about a “D’oh” Homer Simpson kick- yourself moment.) The return was so small -- around 4 percent -- that I was tempted to find another place to put it. But the idea that the money wasn’t safe never crossed my mind. Nobody expects to be a victim of the world’s largest Ponzi scheme, especially after so many years, and especially by a man who was both a family friend and a respected Wall Streeter who had actually been hired as a consultant by the Securities and Exchange Commission at one point.

And inertia is a powerful force. “Madoff” was synonymous with “bank” in our circle. It was like “Kleenex” for "tissue" or “Xerox” for "photocopy." “I’ll put the money in Madoff.” “I’ll take it out of Madoff.” Gifts, trips, cars, down payments on houses, all came from “Madoff.”

Especially in recent years, when leukemia took a toll on my ability to work and required expensive visits to doctors, “taking another $10,000 out of Madoff” became a yearly event. In the end, I had $65,000 invested -- most of it in my father's account, which was earning a higher return. That money was there as a cushion, to be used in case I needed a transplant or other invasive therapy, in case Marilyn couldn’t work because she needed to spend several months taking care of me. (I was also secure in the knowledge that my folks -- who ultimately lost all their liquid assets to Madoff -- could lend us a financial hand if we really had our backs to the wall.)

And Madoff maintained his distant but cordial relationship with our family. As described in the Times article, Cynthia saw Bernie and Ruth at her 50th high school reunion in November 2007. Madoff gave her a big hug. This fall, when the market was showing signs of serious decline, Madoff assured a friend of ours that there was no cause to worry, that in September he had put everything into treasury bills.

Then, on December 11, I got a call unusually late in the evening. Cynthia was on the line and I asked her how she was.

“Not too good,” she said morosely. From her tone, I took it that someone had died, or been injured, or was diagnosed with a serious illness. I know all too well how such things can come out of left field.

What she told me was even more unexpected, that Madoff had been arrested and that we all had apparently “lost everything.”

In the ensuing weeks, we have been busy keeping up on the legal issues involved. It appears that eventually -- largely thanks to SIPC, the Securities Investor Protection Corporation -- some of us will see some of the money back. But it could take years, and most of us will never come close to recovering completely from the loss.

* * *

The Madoff mess has taken a toll on its victims in different ways. There is the obvious shock, the feeling of betrayal, the loss of security, the anger and the depression. I have been through all that, but I also have a potentially fatal leukemia and that means I have a somewhat different perspective.

Over the past few years I have lost many friends to disease. Seven months ago I lost an especially dear one, my buddy in the battle. I feel my own body struggling as the CLL progresses. I know that I may well be living my life in dog years, four years for every one. I have had to deal with the prospect of the loss of everything, and so I have become an expert on loss. I have a big picture way of looking at it.

Madoff hurts, it is a horrible inconvenience, but it will not transform my life the way it will for many others. This is because leukemia has already taught me what E. M. Forster once wrote, namely that "We must be willing to let go of the life we have planned so as to have the life that is waiting for us."

I have already had my life changed, redefined, redirected by events out of my control. For many Madoff stakeholders, this is a new and frightening experience. For me, it’s “been there, done that.”

I did not choose to be fighting a deadly, chronic disease in my late 40s and early 50s. It upset my assumptions, put an end to dreams. But it is the life I have, and the struggle has taught me some interesting lessons. There are lessons that money and status and ambition can never teach you, things that come in quiet moments when you face the reality of life and death.

The lessons are these:

It’s not what you do for a living, it’s who you are as a human being.

It’s not what you have, it’s who you have.

I have my soul-mate, a woman who will happily live with me in an old trailer on the edge of the desert so long as we can still be together. We discussed this long before Madoff collapsed, knowing that chronic disease + medical bills + self employment = a recipe for poverty.

From Marilyn (and family and friends) I have endless love in my life, and I would not trade that life -- cancer included -- for all of Madoff’s billions. And so, even in the starkest moments of financial despair, I still regard myself as the richest man in the world.

That is the perspective I keep coming back to, though sometimes it takes awhile after I hear new stories of the pain Madoff has inflicted on others, or I see his smirking face on TV as he walks back from the courthouse to his penthouse.

The media likes to say that Bernie Madoff, financial psychopath, “destroyed lives.” He certainly disrupted lives, created misery in lives, brought great heartache. I take none of that away from anyone.

But my message to the world is that he destroyed money, not lives.

Believe me, there is a difference.

Five years after our hotel closed, this was Sol and Sarah Alpern's room, right before demolition. There's something symbolic about the wreckage, in restrospect. It sums op our family's Alpern/Madoff experience.

UPDATE

Yours truly was interviewed for this Jan. 29 Bloomberg news report, which is mostly accurate, though Madoff was never a guest at our hotel. He and Ruth visited the Alperns a few times just for the day.

There but for the grace of God

I am reminded, whenever I am in the chemo room -- as I was Monday -- that there are worse things to have than chronic lymphocytic leukemia.

A man, three years older than me, in a wheelchair . . . Had a massive heart attack in 2001, died and was revived, six months of memory loss that led him to wonder why he had scars on his chest. Two more heart attacks.

He has myelodysplastic syndrome -- unable to create sufficient cells in the marrow. He lives on transfusions, goes in when the platelets get to 13. After getting red cells, he enjoys a hemoglobin of 10 for a few days until it starts dropping like a rock again.

He also has rectal cancer, spent six months with a colostomy bag, and is now refractory to the original treatment. Trying something new, hoping it works.

His wife runs their business, has learned the caretaker's art, deserves an honorary RN at this point. Jokes that they call him "la cucaracha" because he, like cockroaches that would manage to navigate the end of the world, is a survivor.

He makes jokes about "asshole doctors," manages some smiles. He's rooting for the Cardinals (this is Arizona). Life goes on.

I’m a lymph node baby daddy

OK, I’ll sheepishly admit that if it’s late at night and I can’t sleep, I’ll watch the Maury Povich show. It’s more mindless than medication and a lot less expensive.

Maury, for those of you who have your TVs tuned to PBS, is a long-running talk show host whose specialty is DNA paternity testing. If there’s a woman in America who slept with 20 men two years ago and can’t figure out who the father of adorable little Brandy is, Maury will keep testing until he finds out.

Like a Kabuki dance or the Oberammagau Passion Play, each Maury set piece opens with a predictable series of events, usually involving a couple and a lot of bleeped cursing and protestations of the "I'm not your baby daddy!" variety. There are two possible outcomes after Maury rips open the envelope with the test results: One is to shout “You ARE the father!,” which usually leads to a crestfallen look on the part of a young gentleman. Alternately, Maury will shout “You are NOT the father!,” which will cause the man to do a little victory jig while the woman runs screaming from the stage.

Well, no special testing required, I am here to report that I am a lymph node baby daddy. When I began 4 mg of Decadron (dexamethasone) to control my autoimmune hemolytic anemia on Christmas Eve, I weighed 212 pounds. A week later I was down to 202. My neck was noticeably thinner, as was my abdomen. I had lost my pregnant look.

I discussed this with my doctor, Dr. Belle, during an office visit on New Year’s Eve. (In case you hadn't noticed by now, I like to mark every holiday with a special medical event.) It is common for people to gain weight on steroids but not to lose it, she said. Not unless there is a whole lot of CLL and attendant nonsense sloshing around in the body’s 600 or so lymph nodes.

This happened to me before, in March 2007, when I first took steroids to combat the initial attack of hemolysis that led to my diagnosis with AIHA. I was on 72 mg of methylprednisolone daily then (4 mg of Decadron is worth about 21 mg of MP) and lost 20 pounds in nine days. I was bulkier to start with and was doing Rituxan at the same time, which had a synergistic effect when it comes to cell kill. In both cases I spent the first couple of nights peeing like a horse.

* * *

My weight loss has slowed for now, and despite the joy of effortlessly losing ten pounds, the whole episode raises some serious questions that have bearing on my next steps in terms of therapy.

One, for example, is just how pregnant with lymph nodes am I? Do I have twins in there? Triplets? (The average baby weighs six to nine pounds at birth, so I appear to be working on a second one.)

All the usual blood-based monitoring tools -- lymphocyte count, hemoglobin, platelets, annual FISH -- give us a glimpse into the state of our disease. But especially in “bulky”or “SLL-ey” or 11q CLL patients like me -- 11q clones love to collect in the nodes -- these tests can show us just the tip of the iceberg.

It wasn’t the visible part of the berg that sunk the Titanic, after all, and more than one CLLer has awakened from testing complacency to find something going haywire fast. Count me as one of them. I was Coombs negative in November, resting on my RBC laurels. By Christmas Eve I was hemolyzing again. The Coombs was positive, reticulocytes were high, and haptoglobin was low. It was the pattern of 2007 repeating itself again.

During the year’s remission that I enjoyed following the completion of R-C(V)P therapy in December 2007, the disease began to return, creating the conditions of immune dysfunction that led to hemolysis again. I could see the lymph nodes in my neck slowly coming back. This was no surprise -- It’s a chronic disease, after all. That I was lulled into thinking all was well by looking at the numbers -- well, that was shortsighted.

* * *

A word is in order here about lulling. I had a very rough year in 2007. So when 2008 dawned with a pencil-thin neck, low lymphocyte count, and red cells on the rebound, I was prepared to embrace the good news. Despite my trip to the NCI to discuss a stem cell transplant trial, I made an effort to spend as much time as possible not thinking and worrying about CLL. Managing this disease can lead to burnout, a depletion almost as profound in its own way as the effects of leukemia upon the immune system. It did not help that I lost more friends to the disease, including a particularly good one.

And so I took a break, which gave my ever-loving and giving caregiver a break, too. I didn't look for clues. I figured no news was good news, and when I got good news on a test -- and I kept getting such news into November -- I embraced it. I knew the nodes were growing and I knew I would have to be back in this fight again, so I cherished and jealously guarded the time that I was, as they say in the military, on leave.

In the end, worrying all year probably would have made little difference to the outcome. I don't blame myself for taking some down time, especially as I was ready by dint of past experience and knowledge to jump into action immediately when needed, and especially as I have a doctor who is really and truly there when I need her. Those factors made me a little more comfortable turning my back on CLL for awhile, which means that I didn't flirt -- too much -- with danger.

* * *

In CLL, many things go on where the sun don’t shine, and this especially includes the peritoneal (abdomonal) cavity. God knows how many more lymph node babies I have in there, gumming up the works and growing into masses that not even Decadron can flush away. It can be notoriously hard to feel these nodes, or any large abdominal mass. Marilyn once had an ovarian cyst the size of a cantaloupe that she couldn’t feel until it twisted on its axis and started to abscess.

Doctors will tell you that, especially as time goes on, CLL can change in the way it behaves and the locations it chooses to hide out in. When docs refer to "the natural history of CLL," they mean the course it takes, which can in many ways be affected by the treatment we throw at it as well as the clonal evolution of the disease itself. (Clonal evolution is what happens as more bad copies of CLL cells are made, giving rise to new groups of clones with particular properties. For example, I began my CLL career without 11q and later developed it.)

One's CLL may go from being more leukemic -- present in the blood -- to congregating where it is safest from therapy, namely the deep abdominal nodes. There is a reason this is the location where Richter’s Transformation to lymphoma occurs. Not that I’m worried about that at the moment, but a constellation of such nodes provides the breeding ground for that sort of thing if sufficient T cell suppression occurs. At the very least, hidden interior bulk may be keeping my immune system so dysfunctional that the AIHA can never be put somewhat confidently to rest.

* * *

So, what to do? Well, aside from Philippine psychic surgery, there’s the CT scan, and that is what Dr. Belle and Marilyn and I have agreed to do to help us develop a treatment plan. The last time I had a thorough one was at diagnosis in 2003. I'm going in tomorrow for another.

I know there are those with reservations about radiation, but the prudent use of X-Ray technology can answer some important questions. Here I am, with 11q CLL, prone to bulkiness, having lost enormous lymph node weight, having relapsed rather suddenly. "Don't worry about what you can't see" is a rather hollow option, even though this is often repeated to us patients, sometimes by doctors. Power, such as we have it over this disease, comes from knowledge. The Titanic had a watchman who saw the iceberg in advance, just not soon enough to avoid the damage. (For a reasoned opinion on the use of CT scans and other imaging in CLL, read Dr. Terry Hamblin's blog post entitled CT Scans.)

To develop a strategy without knowing as much as I can about the enemy is wasted effort. To do treatment and say that it’s a success because all the peripheral blood numbers look fine is also folly.

We need to see as complete a picture as possible going in. Once we have that picture, we’ll have a better idea of know how to proceed. In the meantime, the steroids are holding me, just barely. My hemoglobin has been stable, at 12.1, for the last week. I feel pretty good, despite the Decadron, which gives me a wired effect that tends to make me want to dance like one of those relieved guests on Maury.