Sunday, July 31, 2011

Compassion and Empathy

For too many reasons, some good, some bad, I have not felt much like writing. I am sure the muses will return. I miss them which is silly, because I know that I create them or at least invite them in by proving a comfortable space for them to bide awhile.

In the meantime I have not stopped reading and I wanted to share this thoughtful editorial from the Journal of Clinical Oncology (JCO) whose pages are usually full of dry but important data and clues for those of us searching for cures. It was written by another doctor turned patient who explores what it means for those us that provide care to be empathetic and compassionate. It is worth reading.

© 2011 by American Society of Clinical Oncology

Gain of Function: Empathy for the Uncertain Patient With Cancer

Mark A. Lewis

Author Affiliations

Mayo Clinic, Rochester, MN.

Corresponding author: Mark A. Lewis, MD, Division of Medical Oncology, Mayo Clinic, 200 First St SW, Rochester, MN 55905; e-mail:

The news came from the embassy. Chest x-rays were performed on all immigrants to screen for tuberculosis, and my father's was markedly abnormal. A theologian with a masterful command of language, he would later write of “a tumorous excrescence of considerable magnitude and menace.”1(p403) But he described it to me, in terms comprehensible to his 8-year-old child, as a pineapple-sized cancer occupying much of his right lung. I never saw the chest x-ray, but its opacity cast a long, unwelcome shadow over my family's new life in the sunny American South. We were unsettled in every sense, inhabiting a sparsely furnished house while we awaited my father's curative-intent resection. Like his unseen metastases, our belongings were still in transit.

The discovery of a lung tumor in a lifelong nonsmoker (indeed, a teetotaler) elicited the expected gasps of surprise from his peers and, from his son, misplaced moral outrage. It was simply “unfair” that a devout, clean-living man of God could develop cancer, especially a type so causally linked to the vice of smoking. To his credit, my father never asked “Why me?” but rather “Why not me?” Amid all the accidents and disasters that gave no premonition of impending death, why was he permitted the luxury of a warning? He used his time—the time between initial diagnosis and recurrence, between surgery and palliative chemotherapy—wisely. He died after finishing his life's work, relishing his friendships, and sharing his love with his wife and son. Directing his energies so purposefully, he gave only fleeting thought to the etiology of his disease.

But questions of cause and effect lingered in my mind. It would be dishonest to say that my own faith was not profoundly shaken by my father's disease, all the more so when my clumsy prayers for an explanation received no discernible reply. Even while he was still alive, I searched for answers in science. My first literature search involved desperately rifling through encyclopedias in the school library, hoping to find some crucial fact that his doctors were overlooking. Such an epiphany was not to be found in the Britannica's elementary account of cancer.

During the years of medical training that eventually followed, I came to appreciate the difficulties of establishing a diagnosis, let alone definitive causation. The analogy between medicine and detective work resonated strongly with me as I assembled the facts of a clinical presentation to identify the culprit illness. In my own private investigation, I had no access to my father's discarded records, but I accrued details of his case from my mother's recollections. I learned that he had been inexplicably hypercalcemic throughout adulthood. I discovered that the histology of his lung tumor had not been adenocarcinoma but atypical bronchial carcinoid. And then my paternal uncle died from complications of a pituitary macroadenoma, another cruel twist of fate that I could not rationalize.

At the beginning of medical school, I succumbed to the same temptations of hypochondria as every other student awoken suddenly to the frightening vastness of human pathology. While joking with my friends that every nosebleed presaged some exotic hemorrhagic fever, it never occurred to me that the explanation for my father's disease would arrive through a process so prone to folly as self-diagnosis.

The answer first appeared not in front of my nose, but on it. During residency, small fleshy papules erupted on my face, which a wise dermatologist diagnosed as angiofibromata. These red spots remained merely an affront to my vanity until the day before I started oncology fellowship, when I awoke with right lower quadrant pain so severe I was convinced I had appendicitis. In fact, there was no surgical emergency, and a subsequent visit to the internist revealed that I too was hypercalcemic. Suddenly, the hereditary connection became clear to me. I beseeched my internist to order the necessary tests and consultations to confirm my suspicion. Adenomas were found in every parathyroid gland, islet cell tumors were seen on endoscopic ultrasound of my pancreas, and I had a frameshift mutation in chromosome 11q13. Multiple endocrine neoplasia type 1 explained everything.

My interest in oncology long predates my diagnosis with a familial tumor syndrome. I had been drawn to the field ever since watching my father's doctors tend to him. Neutrophil counts rebounded as if by magic when they administered filgrastim. My father's intractable nausea—until then, the bane of our tense, hushed meals around the family dinner table—was vanquished when they dispensed ondansetron. Fleetingly but mercifully, morphine banished the agony of spinal metastases. Although his oncologists could not provide a cure, their supportive measures seemed to work wonders.

Having never heard the clarion call to join the clergy, I knew I could not authentically follow my parents' footsteps into the ministry. But I was struck by the similarity between effective pastoral care and the healing presence of his physicians. Bearing witness to a mutual compassion for the suffering, I recognized a similarity between the church's sacraments for the sick and medicine's secular acts of palliation. Occupying this common ground would allow me to continue a tradition of providing solace without misrepresenting the strength of my beliefs.

Time and education have not diminished my fascination with the treatment of cancer, even if its mechanics are gradually becoming less mysterious. As I train to practice oncology myself, I am grateful for insight into my own condition and hopeful that self-awareness will improve my ability to empathize with patients. That said, I pray I will never be presumptuous enough to tell a patient, “I know exactly how you feel.” When I see a newlywed twenty-something ravaged by acute leukemia refractory to induction, consolidation, and allogeneic transplantation, I cannot possibly identify with the depth of their loss. Such tragedies lie beyond my frame of reference. It would be an unconscionable farce to pretend otherwise.

Instead, my experience with multiple endocrine neoplasia type 1 has, so far, been an exercise in measured uncertainty. I cannot predict if or when my islet cell tumors will metastasize to the liver. I could yet develop the bronchial carcinoid that heralded my father's sickness. But what I have lost in menin, I have more than gained in perspective.

In assessing the newfound threat of my disease, I became attuned to the military metaphors that abound in oncology. On a large scale, today's research efforts perpetuate the war on cancer declared while combat still raged in Vietnam. On a personal level, patients are praised—and rightly so—for their valor as they willingly incur toxicity to “fight” their malignancies. I can claim no such courage, as I have not yet taken any risky action against my own tumors. Meanwhile, in preparation for battle, I am hardly defenseless. I have already found a calming power in awareness.

My diagnosis alerted me to the potential for insurrection within my own body and finally gave a name to the source of my unease, labeling my family curse. Such self-knowledge can provide comfort even when it does not alter the inexorable march of advanced disease. Patients with incurable metastases at the time of presentation may still express satisfaction from having troublesome symptoms explained at long last. A conclusive pathology report can remove the intimidation of the indeterminate. Conversely, I have seen the frustration and fear of a man whose widespread carcinoma evaded my best efforts to pinpoint its origin. Although locating the primary site would not have rendered him eligible for treatment, he was inconsolable to the end. These monstrous foes are more terrifying in the dark.

My doctors have illuminated my problem and become my sentries; they do not eradicate the possibility of attack but instead reduce the disadvantage of surprise. As a patient, I enjoy the profound benefits of foreknowledge and vigilance while recognizing the pitfalls of surveillance. A particularly ominous mass confined to my pancreas could still be removed before it has the opportunity to invade elsewhere, or a rogue cell could defect to distant tissues below the threshold of detection.

As an oncologist, I can now better relate to the watchful waiting of those under my care who grapple with the disquieting quiescence of a resected stage III melanoma or a diffuse large B-cell lymphoma that melts away after rituximab plus cyclophosphamide, doxorubicin, vincristine, and prednisone. They are thankful for their clinical improvement but untrusting of its durability. I understand their apprehension when they return to my office: Will the intelligence gathering of scans, laboratories, and physical examination bring word of a resurgent adversary? Each re-evaluation could announce the end of a fragile ceasefire.

Adopting the rhetoric of war during active treatment is perilous. We may imply cowardice whenever the most aggressive intervention is not chosen, and we may also undercut peace of mind during recovery. After the rhythmic assault of regimented cycles of chemotherapy, surveillance could feel more like surrender, and watchfulness could mutate to worry about inaction.

Without resorting to glib dismissal of their anxiety, I counsel patients under observation to enjoy life—always finite even in the best of circumstances—to the fullest. I can give this advice without artifice because I try to follow it myself. I am aware that my words might ring hollow, given that my condition may never require any treatment at all. But whether my disease remains indolent or progresses, I know that undue nervousness will not have determined the outcome. I will not allow the dark possibilities of the future to cloud the present, and I do not want my patients to have battled their own cancers in vain. A hard-fought remission that ushers in constant fear is a Pyrrhic victory.

I first sought a career in oncology in the hopes of providing sympathy and providentially discovered a wellspring of empathy. It is, of course, not necessary to have cancer to treat cancer empathetically. A shared diagnosis is only one locus at which our patients' lives might intersect identifiably with our own, and the acknowledgment of uncertainty can itself serve as the common bond. Oncologists are often asked to peer into a crystal ball and speak knowingly about what the future holds, as if we alone can see through the haziness of mortality. We should admit, first to ourselves and then to our patients, the limitations of our gaze. In fact, in confessing our lack of prescience, we can begin to understand our patients' own precarious state. The best prognostic models available to us are still vulnerable to stochastic events. When we critically assess the evidence that guides our management, we apply the rigor of statistics and discard underpowered studies as insufficiently robust, but each individual patient with cancer partakes in an ongoing, irreproducible experiment where n = 1. A median overall survival measured in years does not preclude an unfortunate outlier from dying within weeks, and it is impossible to foresee each person's point on the probabilistic curve. But no matter how much time remains, and whether the goal of care is cure, control, or comfort, we can tell our patients with absolute certainty that we will not abandon them to the unknown.

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Saturday, July 16, 2011

Victim versus Survivor

I didn't write this though I wish I had.

I am lifting it shamelessly from the wonderfully support ACOR CLL list. Thank you, Stephanie

Many of us newer to the list missed the wit, wisdom, humor... of the founder of this list, GrannyBarb Lackritz. Today, I was looking for a subscriber's posts in the archives and came across this post by GrannyBarb. For all of us newer members who joined after GrannyBarb's passing, this gives some insight into her character and also a read for reflection.



Victim or Survivor
By GrannyBarb Lackritz

Although the definition said, "A cancer survivor is anyone who has ever been diagnosed with cancer and is alive today," the first time I read it, I didn?t feel like a cancer survivor. Cancer Victim seemed a much more accurate term. But then the dust settled, treatment began, and I realized the "victim" thing just didn't fit. I tossed the victim/survivor issue around and finally came to the conclusion that a victim and a survivor are the same thing - almost. The differences are subtle but at the same time enormous. The first thing I realized is that a survivor is a victim with an attitude. After I understood that, things were a little better. I had a choice about something - I could be a cancer victim or a cancer survivor. I liked the idea of having an attitude and I liked the sound of being a survivor.

Next, I thought about a friend of mine who had metastatic breast cancer and was the epitome of a cancer survivor. To Barbie, survivorship was a state of mind. Despite the moments of sadness and pain, she never lost her ability to laugh about some of the absurdities of cancer and cancer treatment. She treasured every moment and faced each new situation as best as she could. Eventually, the cancer got her body; however, she never allowed it to reach her spirit. I think of her as a survivor in the truest sense of the word.

Very slowly, the differences between being a survivor and victim became clear, and I started making a list. I'm sure every survivor can add one or two more. This is just a start.

* Being a victim is a state of body. Being a survivor is a state of mind.

* A victim fears hair falling out. A survivor knows bald is beautiful.

* A victim knows about feeling down. A survivor knows feeling down is okay.

* A victim dreads the side effects of treatments. A survivor wonders how to cancel his membership in the Side-Effect-of-the-Month Club.

* A victim is amazed at all the tears. A survivor never leaves home without Kleenex.

* A victim goes to "see" a doctor. A survivor "consults" with his or her physician.

* A victim gets caught in despair. A survivor prays a lot.

* A victim feels helpless. A survivor says "thanks" with dignity and grace.

* A victim enjoys a good laugh. A survivor loves one.

* From the moment we are diagnosed, we are victims. We must choose to be survivors.


Friday, July 15, 2011

Blood Chemistries and More

If you are part of the not medical readership, you can skip the details and just be assured my blood tests are all showing very encouraging and reassuring results.

You know that my hematology tests are all pretty stable- slight drop in my Hgb (13.7 which is borderline low) and a very slight drift down in my platelets, but really all good.

Despite all the attacks on my B cells with rituximab, my lymphocyte counts are flat at or just below the bottom of the normal level. And no neutropenia which is always a slight risk with rituximab. I am very happy with this.

Let me talk about my good news with my blood chemistry.

My kidney function tests have stabilized after moving slowly in the wrong direction, a problem that comes hand in hand with the cycloporin. My uric acid is a stable high normal 7.6, also an another gift from cyclosporin. Cyclosporin is notorious for causing horrible cases of gout. That is why I changed my other blood pressure medications months ago to a combo known to lower the risk of gout rather than increase it.

Liver and electrolytes are all boringly within normal limits, as expected. I am such a clean living guy. No alcohol or toxins. Green veggies from the garden help cleanse the liver.

It seems the addition of Procardia XL, just as advertised, is not only lowering my blood pressure, but also is protecting my kidney allowing me to continue my subterfuge temporary bounce up in my dose of cyclosporin to get the maximum kill of my B cell clone in combo with rituximab.

B2M, a tumor marker is a borderline and stable 2.58. Not perfect, but I'll take it. It suggests a low tumor burden, that the cancer is not about to take off.

So far, so good I must say.

And my palpable nodes are continuing their disappearing act. And no side effects with the weekly infusions.

I am pretty pleased.


Tuesday, July 12, 2011

Waiting for perfect knowledge?

It is always easy to tell when it is too late or too early to start therapy.

It is always easy (at least for me) to second guess any disease management decision.

It is never possible to get it all right and have all the facts.

So what to do?

For me, the answer has always been to get the best information and the best advice from the best people, and then act and stay mindful.

Some choices, such as a transplant, mean that you can't always be aware or mindful. You are just going to be too tired or too sick some of the time. That is where you need a well meshed team of loved ones to be your ombudsmen and of experts to execute the plan. These two groups will keep their eyes on different pieces of the puzzle, but they must communicate. This combo will give you the best chance to handle most of the inevitable bumps on the road so that you can keep moving forward.

Which brings me to another topic.

And another golden nugget:

If you don't know where you are going, you will never get there.

Assuming my chosen path of rituximab and cyclosporin continues to work its biological magic, and my nodes melt away not just where I and Dr. Kipps can palpate, but deep in the darkness of my mesentery, do I pull the trigger on a second transplant, a second shot at a cure and not just a remission?

That would mean a preliminary course of higher octane chemotherapy such as FCR or bendamustine with R or O to further reduce the disease burden and weaken my T cells so that I won't reject the graft as I did last time.

Or do I play out the string a little further in a different direction? Avoid tried and true chemotherapy and engage a newer sexier tango partner, such as one of the tyrosine kinase inhibitor in clinical trial now that doesn't promise a cure, but just a longer and gentler dance.

The risky cure or the unproven promise of a long deep remission?

There is a yet another saying in medicine. This one speaks to the appeal of a new medication.

Better use a new drug soon while it still works.

Is this too cynical an approach? Weren't all medications newborns at some time?

Some "new" drugs (triptans) have grown to be old and trusted friends and other (DES) have been run off leaving behind a trail of shame and tragedy. Some (Penicillin G) have been mostly pushed aside by the newer models, and others (thalidomide) have risen from the dead to find new life in novel therapeutic fields.

So what do I chose?

The devil I know or the devil I don't know?

The honest answer is that I never really know anything fully.

Like the gift of any photograph, I get the truth, but it is always incomplete and always has a built in point of view.

The best I can do is to calmly contemplated the options, purposefully act, and stay aware.

And have my trusty team in place for when I can't.

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Sunday, July 10, 2011

Getting smaller all the time

The nodes are shrinking. My energy is good. And the weather is perfect here in Toronto.

The service for my father was full of love and warm memories. It couldn't have gone better.

Family rushed in from all over to pay respects and remember. His widow arrived with two sisters from the west.
A dear friend who introduced Patty and me almost 39 years ago was there.

The sad part, the elephant not in my room, was my dad. He's the one I wanted to call and talk to about the memorial. He's the one with whom I want to share the details.

I miss him.

The world is a smaller place without him.

Today we are off to the cemetery.

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Friday, July 8, 2011

Second Round of Rituximab

Nothing to report, Nodes are smaller especially in the axillae (armpits), but it seems there may be more in my neck . Confusing, but no worries.

Labs remain good though my WBCs are a bit low from my therapy depleting all my B cells, good and bad.

BP is better with the calcium channel blocker and renal function and uric acid are basically safe and stable.

Except for a hotting flush feeling, no issues with "vitamin R". And of course, great fatigue.


Tuesday, July 5, 2011

Rituximab Week One and BABY!

Six days after my first dose of rituximab my neck nodes are definitely smaller, but they almost seem more numerous. Maybe they were all mushed together before.

Let's see what the second week brings. I am very hopeful, but confused.

I have been working out daily in the hope of giving the therapy every chance to work, and driving tons of water and green tea to flush away the detritus of the killed B cells and protect my kidneys.

But the much bigger news is that I am a new grandfather. My daughter Rachael delivered a beautiful little girl very early this morning. No pictures yet.

We can't rush up to see mommy and baby (both of whom are doing great) until we return from the memorial for my dad.

The circle of life.

Man, woman, birth, death, infinity. I feel life Sam Jaffe.

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Saturday, July 2, 2011

Sharing Our Stories

My post on the ACOR CLL blog:

This old school online community cancer source has been a life saver for me and many others


Recognizing the value of the longevity stories, I thought it might be helpful if some of us shared an executive summary of our CLL journeys from which others can learn. The group is there to answer questions from like travelers in times of need, but it is also valuable to know some of the twists and turns others have negotiated that has lead to good and bad results.

I'll start the ball rolling.

Diagnosed almost 6 yrs ago at age 54 with swollen nodes and a very slightly elevated WBC. Bad prognostics: 11q del, unmutated, ZAP70 +, CD38+. Saw Kipps at UCSD and Rai at LIJ. My WBC counts rose slowly but my CLL quickly grew in my nodes and even a big beard couldn't hide the bulges in my neck. 1 year after diagnosis, I noted petechiae on my legs and found that I had single digit platelets from ITP. That was the first of 5 times in the hospital in < 1 yr with very low platelets.. Very scary times. Failed steroids, R, IVIG, and an emergency splenectomy. Finally the combo of Cyclosporin and Rituximab worked and also unexpectedly shrunk my palpable nodes, cleaned out my marrow and normalized my counts. Had a perfect match from Israel, so I had an early reduced intensity (FCR) allo-transplant July 1 2008 at City of Hope, but lost the graft, likely because I was too healthy from the lack of long term chemo pre-transplant. My CLL was back in 6 months (in the nodes first) and ITP was back in a year, currently controlled with my old friends R and IVIG and cyclosporin. The later is hard on my BP and kidneys, but it beats the alternatives. No infections, no anemia, no reactions, no other problems.

That's my story and I am sticking to it.

During all this I have walked my daughter down the marriage aisle, and am now expecting our first grandchild. Last week I said a final goodbye to my father. (It was not clear when I was diagnosed who would pass first) . We have traveled to Australia, New Zealand, China, Japan, and all over Europe and North America in several trips. I have been forced to redefine my career from a practicing MD to a teaching MD, a gratifying change. I enjoy every minute of life and put little off to the future.

Life is sweet. As someone said, if it weren't for the downside, and the downside is enormous, everyone would want cancer.

Please share your stories if you think this is a good idea.

We are all in this together



Friday, July 1, 2011

Lots to write about but I don't feel like writing

Got back from Canada on Sunday after the memorial service for my father. It's been a rough time.

Monday I was at City of Hope and Wednesday I was at the infusion center for my first rituximab (R) in over 6 months.

Despite only using oral Claritin and Tylenol as pre-medications, I had no reaction to a full dose of 500 mg/M2. The infusion was a non-event, even with the IVIG chaser that kept me in the chair for a total of about eight hours

I cheated a bit and briefly upped my cyclosporin (CSP) back from 75 mg twice a day to 150 mg twice a day, as I believe (with no hard proof) that its antileukemic effects are more apparent at the higher dose, especially in combination with R. That's been my story so far. With that increase comes the increased toxicity, so I added a low dose of a long acting form of nifedipine, a calcium channel blocker, favored by transplant docs and nephrologists for blunting the hypertensive and nephrotoxic side effects of CSP. I am now on three drugs to protect my kidneys and control my BP, and before I started CSP I was on none. It ain't chemo, but it ain't benign either.

I will taper back down on the CSP starting tomorrow, but will repeat the same dance again next week and over all six cycles if my BP and renal function behave.

This is, of course complete voodoo, making up my own idiosyncratic treatment protocols, but there is a raw logic to it, so I am taking the slight risk. Plus it fits with what researchers like: Do an intervention and measure the results.

It is also self diagnosis and treatment, which is a fool errand, but I accept the folly and the responsibility of my acting out my plan. Besides, it is a rather trivial move. The big deal is the use of the rituximab for my >6 cm mesenteric nodes, and preventing my ITP from re-flaring, and really no other reason, just keeping the CLL, the tumor load, in check- dare I say maintenance therapy? That is the real blazing of new territory.

So far, only one day post R, many of my nodes are palpably smaller, but none of them are gone. This is the necessary prerequisite but no guarantee for getting the needed response in the pesky gut nodes. That story will need to wait until my follow up MRI two months after my last cycles. Nevertheless, it will be silly not be happily encouraged by my brisk response to such a gentle treatment.

Though "happy" escapes me these days. That will happen, but I will be patient and fake it for awhile.

I can't wait until Friday night services tomorrow to recite Kaddish for my dad. I promised myself to say that ancient prayer every Sabbath for the next year. It is a son's duty, even for a father who shared with me a healthy skepticism for all things religious. It feels right. It feels healthy, and maybe healing.

Lots of healing going on here.

Lots of healing still needed.

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