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

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.

The Onco Wars

Imagine two oncologists starting a practice, then imagine the same two oncologists having a falling out two years later. Welcome to the Onco Wars, raging now at the office where I have been receiving care for my chronic lymphocytic leukemia.

I'll call them Dr. Belle and Dr. Tower. You can think of them as Godzilla vs. Megalon, with all the attendant fire-breathing and foot-stomping that entails. 

On January 23, Dr. Belle, my doctor, wrote a letter to her patients:

"It is with sadness and a heavy heart that I announce that, due to unforeseen circumstances, I will no longer be able to attend to you as your physician. This letter is to advise you that I will not provide professional medical services to you after January 30, 2012. Your current condition requires follow up and I encourage you to find a new physician promptly to continue this care . . . I suggest you contact your insurance plan representative for assistance in locating a new hematologist/oncologist to assume your care . . ."

And on January 27, Dr. Tower wrote to Dr. Belle's patients:

"Dr. Belle has recently informed us, and sent a letter to you, stating that she will be leaving the practice effective 1/30/12. Let me assure you that our office still remains committed to serving your needs and assisting in your care. I understand that Dr. Belle's departure may be upsetting to you, but I assure you that I am more than willing and able to assume your care, and would in fact be honored to do so . . ."

There is no doubt an interesting back-story here, which I don't imagine I will ever know. For me and for Dr. Belle's other patients, the big news is that we don't have a doctor anymore. Dr. Tower wants us to stay, but I hear through the grapevine that a number are choosing to go.

For me, all this comes at the worst possible time. With a lymphocyte count of about 260,000, hemoglobin of 9.4, and platelets finally having dropped to a Stage 4-level 85, the need for treatment is staring me squarely in the face, if not also socking me squarely in the jaw.

I have spun the wheel of fortune and picked a name from the measly list my health plan offers. I'll be seeing the new name soon, and hopefully I'll like this person enough to make them my new onc. Meanwhile, I won't rule out seeing Dr. Tower. But since insurance won't cover treatment at that practice, it may be time to cut the cord and go. Especially since it has been pretty much cut for me.  

Ouch.

New year, new challenges

It's 2012, and my CLL journey continues along a new stretch of Shit Creek. I am, at the moment, paddle-free.

But let me take a moment to wish you all a Happy New Year. May we continue on in enough good health to continue on, and may we have time left over after dealing with medical matters to enjoy our lives, our loved ones, and the beauty and bounty that the Earth provides.

It's important to keep that perspective, even in difficult times. As you know, I lost my older brother to a stroke six months ago, so mortality seems that much more fragile to me than it did before. 

Then, this morning, I scrolled through the list of blogs I keep on the right side of this page and found that another CLL compatriot, Jackie Sue, has passed on. 

Everywhere in CLL World I see struggle; often with enough success to keep on fighting another day, sometimes with less success than was hoped. And all this is occurring against a rather jaw-dropping array of new progress in CLL, namely the kinase inhibitors such as CAL-101 and PCI-32765 and the CAR trials of juiced up killer T-cells, such as CART-19 at the University of Pennsylvania. (This PDF from CLL Global gives a good, brief rundown on both.)

I cannot help but conclude, as I think of friends I have lost, as I think of those who are struggling as I am, how close we are to salvation, and yet so far.

I blog less these days. One big reason is that I am busy with our ever-growing and ever-demanding online business, not to mention personal matters, usually my health and that of my dear Marilyn. 

But when there is a little time left over, I find myself hesitating to write. In part, I have run out of useful things to jabber about. My training as a newspaper editor etched into my head that a story has to be worth being told to merit space in print.

Another reason is, for lack of a better term, battle fatigue. You can paint lipstick on the CLL experience, but it's still a pig, and after eight years I have seen enough pain, suffering, and life-altering disruption to conclude that having CLL completely and totally sucks. There's nothing good to be said about it, and therefore I find myself not wanting to talk about it. 

That said, it was my promise when I started this blog to describe my journey honestly and completely, so that my experience will be a useful learning tool for those who come along. And so, the latest:

The good news is that the abscess referred to in my last post has healed, the drain has come out of my neck, and the infection is gone. The node in question has not enlarged very much; indeed that side of my neck shows less nodeyness than the other. Perhaps if we CLLers stick drains in our nodes the disease will simply drip away. (Yes, I'm kidding.)

The bad news is that my disease has entered a new, more aggressive phase. For the first time, my red counts have dropped due to marrow impaction. My hemoglobin has been in the 10 to 11 range for the past couple of months. Platelets have also fallen, to just above 100. I am on the doorstep of Stage 4, measuring by those numbers.

What's worse, the nodes have returned with a vengeance, that one area of my neck aside. My guess is that this is simply the product of ineffective control of the disease for many months, as opposed to some new mutation. Until I have a FISH test, I won't know for sure.

Let's back up for a minute. I'll try to cover some history, briefly, that would have made for several blog posts had I had the time.

After a year of treatment, I went off Revlimid (lenalidomide) last March, in part because I wanted to give my body a break. As you may recall, I had two transient ischemic attacks while on the drug. Clotting problems run in my family and claimed the lives of both my brother and my mother.

Another reason was the expectation that I might qualify for a CAL-101 clinical trial. I will call this the Godot trial, because I kept waiting and waiting and waiting for a slot to open, and was told "any day now" for what became months and months. What was supposed to have occurred in April was delayed until August. Even then, it all seemed rather promising. I had restarted Revlimid in July because the need to treat could wait no longer. Calistoga, the maker of CAL-101, was even willing to waive the requirement that I should not have had treatment 28 days before enrolling. When I was about to pack my bags, I got the bad news: due to a clerical error, the slot in question did not exist. And they could not just add a new one, since the maker of the other drug in the trial, ofatumumab (aka Arzerra), would not provide any more free drug.

I was told that drug companies hire other companies to organize and manage trials for them, and that one of these companies had made the mistake. The principal investigator was quite aplogetic and said this had never happened in all the years he had been conducting trials. Goodbye, paddle.

Meanwhile, back at Revlimid Ranch, things weren't going so well. When I restarted the drug, I did so with a great deal of care paid to the clotting issue. At the time I began Revlimid 2.0, my brother lay in the hospital, unable to move his left side and barely able to move his right. 

I had a complete clotting panel done, which confirmed my propensity to clot. Indeed, it came out worse than a similar panel that was run on my brother.

I had been on warfarin for a little while prior to quitting Revlimid in March, but my clotting time always remained pretty much normal, which means fast. And so when I began Revlimid again, we added more warfarin, to which, it turns out, I don't easily respond. Later, my doctor added aspirin to the warfarin. Meanwhile, the Revlimid dose was kept minimal, at 5 mg twice a week and occasionally every other day. As it turns out, I wasn't getting enough of the drug.

In November came the first signs of trouble. My red counts showed a drop, and my lymphocyte count showed a jump. Shortly thereafter, I began to notice an orange cast to my urine. I've posted about that several times, and in the past it had always been a sign of hemolysis due to autoimmune hemolytic anemia (AIHA). I assumed that was the case this time as well.

Revlimid, an immunomodulator, had seemed to put an end to my AIHA. Tests were ordered, and in the meantime I went on Revlimid 5 mg daily in an effort to head the hemolysis off at the pass. It made sense at the time: Maybe I needed more Revlimid to control the situation.

But the testing showed no signs of AIHA, and also that red counts were continuing to drop. And the orange urine remained, which brought me to the next logical conclusion: internal bleeding due to blood thinners. 

So I stopped the thinners and the orange disappeared almost immediately. And no blood thinners meant no Revlimid, which was coincidentally giving me new fits in terms of tumor flare. (Goodbye, other paddle.) After merely five days of 5 mg, the minimal dose Celgene makes and well below that considered optimal in trials, I looked freakishly flarish (see second-to-last photo in my last post). 

I had always had a tumor flare reaction with Revlimid, which is actually a sign that the drug is working, but never anything like this.

It felt like a Vise-Grip was closing around my neck from the back, leaving just a bit of my Adam's Apple free, and making it hard to open my mouth very far. It was at this point that the abscess formed, although it took another week, during which steroids brought down all the flare but the abscess, before I ended up in the ER and the diagnosis was made.  

During the December Drain Festival, I could not treat the CLL because of the wounded node. Now that it has been removed, and the node is healing -- the ENT doc says to give it at least two weeks -- treatment is back on the table.

I am looking into a couple of clinical trials, as well as into a treatment to keep me going in the interim. One thing I have learned about trials, of course, is that Things Take Time. Another thing I have learned is that the study drug may be free, but all other expenses, from administering the drugs to CT-scans to the cost of the drug that the study drug is being tested with, are usually out-of-pocket. Unless covered by insurance (insert guffaw here).

The treatment I may do soon is R+HDMP, or perhaps Arzerra plus HDMP, which is a whole 'nother can of worms.

I've been stymied at every turn by my increasingly stingy health insurance plan, which covers fewer and fewer doctors -- including treatment in the office of my own oncologist -- and fewer and fewer drugs. Clinical trial expenses, forget it. And while Arzerra may have FDA approval for CLL, to borrow a phrase from a popular viral video, honey badger don't care. 

It's gotten so bad that I've found myself flirting with the idea of dropping coverage for six months so that I can get on the new federal Pre-Existing Condition Insurance Plan. I know, this is probably a bad idea, especially since my little hospital getaway (two fun-filled nights and three fun-filled days) came to more than $10,000, of which I will end up paying no more than a third thanks to my insurance, bad as it is 

(I am so looking forward to 2014, when I'll be able to buy decent insurance under the new health care law. I have my issues with President Obama, but from where I sit, he deserves a big, wet kiss for Obamacare, imperfect as it is.)

The cherry on the sundae is that there is a fair degree of tumult at my oncologist's office that is also not helping matters. 

So let's just say that external forces are not making my little canoe trip an easy one. Shit Creek is hard enough to navigate with a paddle. 

But onward I go, mateys, trying not to capsize.

To quote Newt Gingrich (yes, I am quoting Newt Gingrich):

Perseverance is the hard work you do after you get tired of doing the hard work you already did.  

My little OL protocol: ofatumumab and lenalidomide

Yes, that little ol' lab rat, me, is about to undertake a cutting-edge protocol to fight chronic lymphocytic leukemia: ofatumumab and lenalidomide.

I call it the OL protocol, and there’s a trial at MD Anderson in Houston that’s just starting to accrue patients for a two-year study of this new drug combination.

Thanks to a forward-thinking oncologist who is willing to fight like hell for her patients, and thanks to two drug companies that are willing to help those who can’t afford to pay the enormous costs of the treatment, I am going to be following that protocol from the comfort of home, or at least from a comfortable chair two hours away.  I start next week.

Because I will be one of the first CLLers to try what could become an important  therapy for our community, I will blog about my experience on a somewhat regular basis.

To briefly review, ofatumumab is the fully-humanized anti-CD20 monoclonal antibody that was approved for CLL in October by the FDA. It goes by the trade name Arzerra but old CLL hands (Man, I guess I am one of those!) may better know it as HuMax-CD20. It was developed by Genmab and licensed to GlaxoSmithKline.

Lenalidomide, which I wrote about in my last post, goes by the name Revlimid, and was developed by Celgene. It has been approved by the FDA for Myelodysplastic Syndrome and Multiple Myeloma and has had some interesting results in CLL.

December’s American Society of Hematology meeting included a report from MD Anderson on a trial of rituximab and lenalidomide in 37 relapsed and refractory patients, all of whom had used Rituxan in the past. The new OL trial appears to be based, in terms of timing and dosages, on their experience with RL.

Dr. Alessandra Ferrajoli and the team o' Texans reported an overall response rate of 68%, of which 51% received a Partial Remission and 16% a Nodular Partial Remission. Sixteen percent had stable disease and 16% failed the protocol.

Other studies have shown an overall response rate of 32%-47% among relapsed CLLers given single-agent lenalidomide, so MDA considered the combination with the monoclonal antibody to be “superior to single agent lenalidomide, despite all our patients having received prior rituximab.

“Additionally," the authors wrote, "there was no increase in toxicity and lenalidomide-associated tumor flare reaction was less frequent and less severe with this combination compared to single agent lenalidomide.”

For the record, a 2008 MDA study of single-agent lenalidomide in relapsed patients showed an Overall Response of 32%, which includes a Complete Response of 7%. An additional 25% achieved stable disease. A 2006 study by Dr. Asher Chanan-Khan’s group at the Roswell Park Cancer Institute in New York reported an Overall Response rate of 47%, with 9% achieving a CR. Another 18% had stable disease. 

My prospects

Clearly, my response can fall anywhere on that rather large map, landing from CR to CRap. And just as clearly, this protocol is not going to be a cure for CLL nor an avenue to a molecular remission. But it may serve as a welcome and effective control, and I have reason to be optimistic as I begin.

I have always responded well to whatever new drugs I have been given and there is no change in my FISH profile that would indicate a loss of that ability. Of course, having had several treatments over the years, some disease resistance has developed in response. Indeed, the CLL cells have created a rather secure suburban community in my abdominal lymph nodes. The ability of lenalidomide to disrupt that micro-environment, including the nurse-like cells that help CLL remain comfortable, is a definite plus.

I am also younger and in better shape, both in terms of my health and disease state, than many of the participants in these trials. I can weather the side effects -- notably fatigue, tumor flare, and possibly low neutrophils and low platelets -- that may come my way.

Ofatumumab will assuredly be more effective on me than rituximab, to which I no longer respond well after many, many uses. Indeed, ofatumumab has given a new lease on life to any number of people who have tried it before me, some of whom I have known personally, and many of whom had stopped responding to Rituxan.

Readers may recall in my last post that I said I did not wish to use ofatumumab as a single agent, that it was too important a weapon to use gratuitously. That remains the case, and I don’t see the OL protocol as a wasteful extravagance.

I have a lot of abdominal lymph node bulk, enough that a year’s worth of steroids, Rituxan, and even cyclophosphamide were unable to make much of a dent in it. Ofatumumab is a new drug for me; with some luck, my nodes might respond the way they did to Rituxan when I first used it six years ago. In other words, they may undergo a noticeable reduction that can then be hammered home by the lenalidomide.

Can I completely clear the abdominal nodes? It would be quite a feat, but all things are possible in life and combination immunotherapy. Even if I can’t, can I reduce the bulk by a meaningful amount -- say 50% -- and throw my disease level back to where it was in 2005 or 2006? I think even hardened realists would say that is possible. The 2008 MDA study of single-agent lenalidomide reported a greater than 50% improvement in lymphadenopathy in 41% of patients. I'm probably starting from a worse position than most patients in that trial, but remember that we are also adding the ofatumumab.

Such a reduction in disease –- along with hopefully enhanced immunity, including a cessation of autoimmune hemolytic anemia, with its endless threat of hemolysis –- makes this an especially intriguing protocol.

Nothing else out there holds the prospect of doing all these things for me, especially with minimal toxicity, and these are all things that need to get done. For what it’s worth, some of the experts find this drug combination to be full of potential. I am told, for example, that MDA's Dr. Michael Keating is “very keen” on it. 

Perspective: Playing for time vs. transplant

It’s the right thing at the right time, as far as I’m concerned, which brings up an interesting point. When I was diagnosed in 2003, neither of these agents existed for CLL. Despite the feeling among us patients that progress can never come fast enough, here is a case where two new drugs may make a significant impact on my disease. So there is indeed some wisdom in playing for time if you have the stomach for it.

Playing for time is something that you have to finesse as you go, since the disease is not static. Much depends upon your biological markers -- IgVH mutational status, chromosomal deletions per FISH, ZAP-70, and CD38. But the bottom line, which I think is sometimes given short shrift in patient discussions, is your actual disease progression, clinical history, and ability to respond to treatment. 

To my mind, it's the practical stuff that counts. Which brings us to the stem cell or cord blood transplant, sometimes seen as the CLL end game. For many of us, and maybe even yet for me, that will be the case. But I think it is a little premature to be swept along on some kind of bandwagon, thinking that transplant is inevitable and maybe even desirable. Perhaps, if meaningful control of CLL can be obtained by means of OL and other agents in the pipeline, some of us will have a realistic alternative.

Frankly, transplant results are virtually impossible to predict. Talk about arbitrary and capricious: You can die. You can be cured, or at least disease free for a long, long time. You can also relapse and have to wake up to fight the whole messy, draining battle all over again. You can struggle along for years with debilitating graft vs. host conditions, from skin reactions to gastrointestinal problems to seizures.  Many patients are grateful to be alive despite the side effects; others have regrets. 

One wrote to me off the blog: "Do not underestimate the effects of chronic GVHD. When you read about them, they might not sound too bad; however, the collective experience of multiple GVHD effects can make life after a transplant quite miserable.  And chronic, in this sense, must be seen as a permanent condition."

I will never forget Dr. Terry Hamblin's comment that he knew of two patients who were so beset by post-transplant graft v. host problems that they killed themselves.

There is a yin and yang to this, of course, and I am not discounting the success stories, those who write that they are "recovering nicely" after two years, and those who are a few years in with only minor problems, nothing to get too excited about, and with no regrets about having taken the big step. 

I keep a list of blogs on the right side of this page. Scroll down and click on those of the transplant patients: Brian Koffman, Jackie Sue, Ron Gottula, Dan O’Mara, and Harvey's Journal. Take a look at Tom McCune’s website; Tom was once the CLL cure “poster child,” now in relapse. Check the posts at CLL Forum and ACOR from patients like Chonette and JursyGurl, both of whom are having success with minimal trouble so far (you go, girls!). Read Raywood's Great Stem Cell Transplant Caper, and then read all the nice comments about him on CLL Forum's "In Loving Memory" page; Ray was a character, an irrepressible optimist and guitar picker who put CLL to Country music. But all the sunshine in the world doesn't guarantee success. Neither, for that matter, does a Vulcan-like level of meticulous preparation.

Gather all this –- and more -– into your head and you may conclude, as I have, that the transplant is unpredictable at best, freakishly difficult much of the time, and, obviously, fatal at worst. You may as well go into the hospital singing "Luck Be a Lady."

"They call you lady luck
But there is room for doubt
At times you have a very un-ladylike way
Of running out . . ."

I think the outcome is well out of your hands despite however many statistics you arrange in your favor (the optimistic configuration of published data can indicate an element of wishful thinking that creeps into even the most rational of minds.) When the chips are down, you're putting all your chips on the table. A transplant, to my mind, is something you do when you HAVE to do it and no sooner.

It is not a battle that I am afraid of, but it is not one I am jumping to fight if there is a wiser way to conduct the war. 

I am hoping that OL will be an effective weapon, something of a game-changer, at least for a reasonably long time. I’m 53, healthy other than the CLL -– my blood pressure tests out these days at around 120 over 70 and my primary care doctor wants to frame my lipid profile.  My quality of life is good (when I’m not hemolysing).

Beyond the medical facts, CLL has taught me that I am mortal, and so it has ironically given me the gift of being able to live life fully today, to let go of old regrets and unhealthy patterns, and I am happier than I have ever been.

So why not still play for time? 

There is a fine line in CLL between being too proactive and too reactive. Much of my CLL journey has been spent trying to find and stay close to that line. At times I have been more successful than others. I think -- I hope -- that I have found it with the OL protocol.

It's the line of scrimmage between me and the disease. It’s first-and-ten and I will move the ball down the field as best as I am able, however many yards at a time. I’ll report on it as I go.

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?

The runaway shopping cart CLL fitness test

On Tuesday night we were at Bashas', our favorite local supermarket, which is built on a sloped lot. After we loaded the car with groceries, our shopping cart, to make a long story short, escaped. It was heading downhill, and at first looked like it would come to rest against a metal railing. But the gimpy wheel that had annoyed us during our trek through the store came into play, setting the cart on a subtle curve right toward someone's car, and it was picking up speed as it went.

It would not be right, I thought, to allow it to bang up someone's vehicle, so I took off after it, running as fast as I could. I caught up with it about three feet from the car it was heading for, which I saved from a scratch or a dent. I was not so lucky. As I grabbed hold of it, both it and I fell, me on my left side.

I bruised my shoulder, got some long scratches on my leg, and the bumpy asphalt was particularly unkind to the area just below and to the left of my knee. This was not helped by the fact that I was wearing shorts, leaving bare skin to come in contact with the ground. I came away with a bloody sore about 2" by 2", part of it black.

Nurse Marilyn drove us home, I took a shower, and she administered Neosporin and a bandage to the wound. The next day we saw our primary care doctor, just to make sure everything was OK. This is where the CLL comes in, because if I did not have lowered immunity -- made worse by my neutrophils being at their nadir due to recent chemotherapy -- it's unlikely that we would have felt the need to be so cautious.

The doctor complimented Marilyn on her bandaging ability, and the black spot was determined to be asphalt, which had embedded itself in the skin, and which we were told would gradually work its way out as the wound healed. He was pleased to hear that I was on prophylactic Bactrim, which is one of the precautions I am taking while doing RCD (Rituxan, Cyclophosphamide, and Dexamethasone) therapy for CLL and AIHA (autoimmune hemolytic anemia). Apparently, Bactrim is used to fight staph infections, among other things. I was sent away with a clean bill of health, or as clean as a CLL patient with a bloody sore can get.

One of my first reactions to the incident, besides "ouch," was to put it in the context of CLL. It was as if I had been subjected to an impromptu physical fitness test: Did I have enough hemoglobin to run at full speed and tackle a shopping cart? Were my platelets numerous enough to insure proper clotting of the wound? Was my immunity good enough to avoid infection? Have my bones survived steroid therapy well enough to avoid breaking or fracturing when my 200-pound body hits the ground?

I was pleased to have passed on all counts, and to know that I can still endanger myself by stopping speeding metal objects. After awhile, one learns to take nothing for granted about life with CLL, especially after having lived with periods when the disease, in the form of its AIHA complication, has impacted my ability to do things like I used to.

There is a fitness scale for cancer patients, called the ECOG performance status, named after the Eastern Cooperative Oncology Group. The scale runs from 0 to 5, with 0 being the best, "Fully active, able to carry on all pre-disease performance without restriction." For most of my CLL life, I have been at that level. But the AIHA, with its red-blood-cell-destroying hemolysis, has put me at ECOG 1 or 2 at times. Two, for example, is ""Ambulatory and capable of all selfcare but unable to carry out any work activities. Up and about more than 50% of waking hours."

I suppose I am lucky that I am generally a 0, as the shopping cart chase demonstrated. I hope to avoid ECOG performance status level 5, which is described succinctly in the chart as "Dead." Those at level 5 don't put in much of a performance, evidently.

Dopey, dopey, dopey

Reading CLL discussion groups, and reading between the lines in those discussion groups, I am very much aware that some people deal with the stress of leukemia by taking drugs. And by drugs I mean alcohol and prescription antidepressants as well as illegal substances such as marijuana.

What is causing me to write about this is the tempest-in-a-bong over Olympic champion Michael Phelps. The 23-year-old swimmer was photographed smoking pot; from the overreaction of some people, you’d think he had been caught strangling mermaids with one of those ribboned gold medals.

Well, give me, and Michael Phelps, a break.

Somehow the United States managed to come into existence and prosper for its first 150 years without any restrictions on what you could put into your body. Alcohol, pot, laudanum, opium, cocaine, magic mushrooms, you name it -- all were there and ready for the taking as this country built itself into something ever more prosperous and successful.

But American respect for individual liberty has always had a counterbalance: our Puritan heritage, which entered the 20th century in the form of the temperance movement that brought us the Prohibition of alcohol.

Big success that was, of course. Since then we’ve been on a bender Prohibiting just about everything else, and that hasn’t been working, either. Our last three presidents all used illegal drugs in their youth. Our drug laws are a joke, which is hardly funny because of the enormous waste of lives, money, and resources involved.

Within the past 15 years or so, medical marijuana has gained a foothold in some states. It’s obvious that anyone with a flimsy excuse -- I do believe painful bunions were once used -- can get a doctor to prescribe pot in California. At least when it comes to marijuana, the absurdity of Prohibition is starting to break down. Gone are the days, and they were real, when people were sentenced to years in jail for possessing a joint.

* * *

I’m not a druggy personality. I like the occasional glass of red wine, but I find that being fully awake and aware in the here and now is more trippy than living in a haze. I experimented with the usual stuff in high school and college, but it’s been 30 years since I’ve smoked pot.

The only drug that I ever truly liked was LSD, which I took a half-dozen times in college. Sometimes it was revelatory, sometimes merely enjoyable, sometimes a bit of both. I recall laying on my back in the organic garden at UC Santa Cruz, watching as passing clouds smiled at me. Another time I was listening to the music of Johann Sebastian Bach, which wove itself into something resembling a complex Persian carpet right before my eyes. Never once, despite hysterical media reports that indicated it might be a real danger, was I tempted to jump off a building to see if I could fly.

In life, the Darwin Awards apply, whether you’re on drugs or not. Some people can handle drugs and some can’t.

I think we’ve all seen what happens to friends and family when people can’t cope with them, or when they take undue risks to get high. A family that has always been quite close to ours lost its sensitive and talented middle child to some bad heroin one night in New York City; he was in his 30s. Another kid I knew and worked with many a summer led a life of drugs and dissolution, stealing from his own parents as an adult, until he managed to ruin his body to the point that it killed him.

And I know many more stories involving our legal drug. alcohol; I have seen it bring heartache and pain, emotional and physical, to people who could have and should have had happier and longer lives.

I also know people in their 70s who have smoked pot their entire lives and seem none the worse for wear. Just about everyone I was close to growing up has violated our Prohibition laws on multiple occasions and most of them are quite happy and successful today.

Which leads me back to my point: Our drug laws are dopey. They’re not respected and they don’t work.

People will do what people will do, whether they’re 23-year-old swimmers or 60-year-old cancer patients. Perhaps some day American society will be ready for an adult discussion of drugs -- why they should be legal (or at least managed more sensibly) and why you should make the choice to use them sparingly.

Until then, let’s drop the hypocrisy. Let’s zip the flimsy moral outrage. Drugs are everywhere. They always have been, they always will be, and in a free society Prohibition will always fail.

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.