Tough Dude

Bill easily uses cuss words. He is a man’s man. He came from slim pickings but made a very successful career. His successes included marrying well and raising a devoted family. Horses are his passion and even at age 80 he adored his horses and rode them with great contentment.

I met him 3 years ago when a physician noted the presence of an abnormal antibody protein in his blood. I knew this blood abnormality was common in the older age group. I knew it might herald the later development of lymphoma or myeloma but most patients with the disorder lived out a normal life and died from something else. My assessment concluded the problem was somewhat more advanced but he did not exhibit any of the manifestations of a clinically important blood disorder. Watchful waiting was the correct strategy.

He chose not to be followed regularly. I was surprised one day to see him standing outside my office. He was his usual direct self; a diagnosis of metastatic prostate cancer had led him back to my medical center. He was satisfied with his therapy and the disease seemed contained. He again described his interest in his horses and his goal of continuing to ride them. We bantered about life and our mutual friend, a former colleague of mine who was one of his best friends. Bill seemed very engaged in life despite the prostate cancer diagnosis and he seemed not to exhibit symptoms of progression of the antibody protein disturbance I was supposed to be following. He promised to see me in my office for an official follow up.

He did not follow through.

Recently, his primary physician alerted me to the fact that Bill was very ill. He could no longer walk without assistance and certainly could no longer ride his horses. His mental capacity diminished. I suspected his protein abnormality had progressed to an actionable malignancy complicated by hyperviscosity and cognitive dysfunction. I asked his MD to order certain tests and the results confirmed my suspicions.

He could no longer remain at home. I arranged a transfer to my hospital. My worst fears were confirmed. He had progressed to a severe, explosive form of a malignancy of the cells that make antibodies. He was gravely ill.

I met him in the hospital to have a frank and deep discussion regarding goals of care. He looked frail and could barely open his eyes. I described a possible treatment strategy to try to control the dreadful disease that was sapping his life blood. I proposed a reasonable plan of palliative care since the likelihood of quality survival beyond this point seemed quite unlikely. I and his family thought he would choose quality survival over trying to extend his life on this earth. He could return home the next day to see his horses and be made comfortable at the home he loved surrounded by his family.

When asked what he wanted to do, he said, ” I want to play the game of living.”

Despite my best instincts, therapy for the blood disorder has begun.

I hope he wins.

 

 

Homage

Charlie died two days ago. He was a patient of mine for the past two years and we wrestled together with the complexities of multiple myeloma and its management. He was more than a patient. He was a good friend.

When I first met him, I was struck by his name. A former medical school professor of mine and later a physician I had the honor to call a colleague had the same name. It turned out Charlie was his son; hence the entree to shared experiences and friendship.

Charlie was very successful in his own right. He was married to a beautiful and very bright woman and had lovely children from a prior marriage. He enjoyed fine wines and traveled to Paris and Barbados regularly, often to avoid family hassles with the holiday seasons. And so it was particularly hard for Charlie to face the need to constrict his wonderful life and bend to the whims that myeloma and its treatments brought. For example, one of the drugs employed in treating myeloma is Revlimid. Although a wonder drug with startling success in this disease, a nasty side effect for some patients is uncontrolled diarrhea that is episodic and unpredictable. Poor Charlie was caught on busy Manhattan streets too often with this predicament thus curtailing some of his enjoyable outings to restaurants and NYC nightlife.

He witnessed success with several therapies and, in part because of his professional interest in biomedical companies, he kept abreast of the rapidly changing landscape of therapies for multiple myeloma. Very unfortunately, Charlie developed a complication of the disease, kidney failure which itself is fatal unless one chooses hemodialysis or renal transplantation. He was not a candidate for the latter in view of his age and cancer diagnosis.

As a physician I was struck by the juxtaposition of his predicament and the emerging information about brand new therapies that portend even better control and survival for myeloma patients. Charlie’s myeloma remained under good control but he was facing death from kidney failure. The intellectual conundrum was startling to me. I had a patient with a disease for which wonderfully exciting therapies continued to be developed. He was alive and knew I had recently returned from a medical convention where three new drugs for myeloma were just FDA approved and exciting new approaches employing our native immune system to control myeloma were revealed and discussed with a great sense of excitement. Only now I had my patient facing the existential decision to cope with kidney failure by taking on hemodialysis, a process that would severely curtail his quality of life, or choose to die comfortably but knowing he would not die of his cancer. The new therapies promised control for many more years and perhaps cure. What a difficult problem!

My patient chose well. I cannot imagine with clarity his thought processes but among his considerations were his daily quality of life or lack of it and family matters. I was privileged to visit him at his home as he lay dying. He had been able to speak with clarity individually with family members and he knew with certainty that his loving wife would attend to his every need. His death was peaceful and dignified and a sure reflection of who Charlie is.

It was a great honor to know him and serve him. May his passage be bountiful and peaceful.

Christmas Message

Today Christians around the world are celebrating the birth of Jesus. Fundamental to the importance of this celebration is the belief that the Christ child dwells in the least of us. Thus, all human beings are sacred. Other major religions have similar beliefs about the sanctity of life.

While listening to sermons at two Christian churches in the past 24 hours, I was reminded of a recent patient encounter that I found very troubling.

Last week, on my daily list of patients was a new patient I was about to see. The schedule noted Joe was 47 years old and he was seeking my opinion regarding the diagnosis of Myelodysplastic Syndrome, a bone marrow disease that is considered to be neoplastic and often a precursor to Acute Leukemia. Thus, I was intrigued because the new patient was quite young for this diagnosis and my thoughts before meeting him revolved around an aggressive stance to thwart the process including an allogeneic stem cell transplantation (stem cells from another person) since he was so young. This would provide him with an opportunity for cure and he was young enough to withstand the potential toxicities, assuming he had no other chronic illnesses.

When my nurse brought him into my office for the consultation I was struck by the obvious fact that he had Down Syndrome. His parents accompanied him and they led the conversation. Joe was relaxed and otherwise healthy appearing. But his parents were distraught.

They live in New Jersey and have assiduously cared for their son. They described their nightmare of dealing with doctors who would tell them that since Joe has Down Syndrome there was no need to vigorously pursue any diagnosis that threatened his life. They were stunned when a neurologist refused to evaluate Joe for a possible seizure disorder. Joe’s uncle is a well known pediatrician and took on the responsibility of treating him with anti epileptic drugs even though he is not a neurologist because no local neurologist would do it.

Their most recent concern evolved from routine blood testing that showed that Joe had a very mild macrocytic anemia and very mild thrombocytopenia (low platelet count). Although these abnormalities can be seen in Myelodysplastic Syndrome, they also can be a result of the effects of anti epileptic drugs on the bone marrow. If so, there was absolutely no concern for Joe’s health. They then tearfully related that the hematologist they had seen told them in no uncertain terms that Joe had a preleukemic condition and that he would die from Acute Leukemia in 1-2 years! And then he said that because he had Down Syndrome he would not be a candidate for any therapy!

Their distress was palpable and very understandable. I was stunned by their story. Joe is a human being, and in the Christian perspective, Christ dwells within him.

I was equally tearful and told Joe’s parents that first it was not at all clear that he had Myelodypslastic Syndrome and even if he had it Joe would be a candidate for therapy if the disorder progressed to a point where it threatened his health. Importantly, it was more likely the mild blood changes were merely a result of the use of anti epileptic medication.

I suggested a neurology assessment at my Medical Center and I offered to follow Joe over time. They left my office with gratitude for the respect I showed them and Joe and with relief that the man they loved was likely to live his life as best he could for a much longer time.

I was left to puzzle over my physician colleagues who failed to respect humanity in all of its forms. It was a very sad day for me.

May I Die?

The plight of Brittany Maynard has brought public attention again to the issue of patient control of his or her destiny, particularly as it relates to the timing and management of one’s own death. This lovely and bright 29 year old woman has faced her mortality after being given the diagnosis of unresectable glioblastoma multiforme that has displayed a relentlessly aggressive course. She has been informed about the expected decline in her health with the high likelihood of appreciable suffering. She and her family moved to Oregon, one of the few states that allow medically directed self determination of the end of one’s life when there is futility and suffering. She has chosen to die on November 1, 2014, after her husband’s birthday. Her choice to avoid debilitating therapies has provided her with the opportunity to travel and enjoy her family and do other things that have brought some measure of joy to a life too soon to end.

I relate Brittany’s courageous decision because a patient of mine came to me recently for a candid discussion regarding her own remaining time. She also had concluded, as Brittany did, that therapy for her third cancer, at age 81, would be too caustic and that any added months to her life not worth the suffering. She came to me to ask my permission to end her life in the comfort of her family at a time of her choosing.

Pat has been a patient of mine for 13 years, first presenting with Stage 3 breast cancer that required combination chemotherapy, radiation therapy and hormonal therapies. This disease lay fallow for the ensuing years.

Two years later she was found to have a form of lung cancer that is considered to be relatively nonaggressive and which usually remains limited to lung tissue. She underwent surgery and when there was local recurrence she was placed on Tarceva, a pill that blocks a cell surface receptor thus inhibiting a growth signal for the lung cancer. She has been taking it for the past 7 years with excellent control and minimal side effects.

Although courageous in her efforts to live with cancer, she has had immense fortitude withstanding 15 back surgeries that were required for severe scoliosis and disc disease. She has spent many months over the past decade in a recovery mode and her mobility has been severely restricted. Pain is a constant in her life.

Despite these immense medical burdens, she has faithfully come to see me every six months with a smile on her face and with her incredibly helpful aide by her side. I always looked forward to seeing her and I was grateful her cancer problems were under control and not a dominant issue in her life. Until her most recent visit.

I knew she had a problem after receiving a call from her asking my recommendation for a gynecologic oncologist at Columbia, where I work. She explained that a tumor had been discovered in her pelvis, thought to be ovarian, and she wanted her care here. I did not know what transpired until her visit with me.

She had a proper cancer operation for presumed metastatic ovarian cancer but the pathology was most consistent with metastatic breast cancer. This is not completely surprising, since there is a low risk of late relapse in this form of cancer.

She was offered oral chemotherapy in Connecticut where she lives, but after a few days she felt it was intolerable and chose to stop it. She considered other forms of therapy but after careful thought, she concluded that she preferred no further therapy because her current good quality of life allows her to enjoy her family and friends, much like the choice Brittany made.

Pat seemed embarrassed when she told me her decision. She thought I would not approve. It suddenly became quite clear to me that she had come to see me to ask my permission to end her life on her own terms. She told me she had enough of a certain medication that would be lethal if taken but she was afraid she would fall asleep too quickly and not finish the task. It was clear she had given a lot of careful thought to the process. She was informed about the organization called Compassion and Choices which has a presence in Connecticut and which is an advocate for self determined death with dignity. She had not yet reached out to them but awaited my response.

I told her that I completely understood the reasons for her deliberative decision and that I supported it. I knew the last decade of her life had been very constricted by her medical maladies and that pain has been a daily component. She rightfully could see no utility in attempting to prolong her life at the cost of more suffering. The only issue became how to end her life in peace.

I suggested she reach out to Compassion and Choices to see what resources they could provide. I also mentioned Home Hospice and morphine. She already was using oral morphine at night to control pain. I reminded her that it was a great drug for pain, respiratory distress and anxiety and it has eased the passing of innumerable patients at the end of life. I told her this form of dying can be very peaceful and comforting to loved ones as well as the patient.

This visit was almost unique in my experience since most patients are focused on life at any cost. I had great admiration for Pat as she so thoughtfully presented her ideas. I was honored to think she had such respect for me that my concurrence was important to her. I said good bye and kissed her, assuming this would be the last visit. She then asked, “When will my next visit be?” I was very surprised, but the twinkle in her eye told me her answer. She was buttressed by my approval of her decision. There will be no other visit.

Vacation Angst

All of us need time away from our professional duties. A vacation is a wonderful time to recharge the batteries and take stock of where we stand in the currents of life.

As a physician, a leave from daily practice brings with it some concerns. There is always a group of actively ill patients. Although my covering MD colleagues are wonderfully skilled and extremely capable of dealing effectively with anything my patient population might present to them, I always have an underlying worry that they may not be as attentive as I to the nuances of the ill patient. This is not surprising as I also periodically ‘hold the fort” until a colleague returns. Additionally, available records never fully reflect the depth of understanding a primary physician has as it relates to a particular illness.

In any event, I recently needed time away with the plan to relax, read some interesting books and spend some time in Maine, as I have since childhood.

I arranged for excellent coverage with close and experienced colleagues who were quite willing to see the patients in the outpatient arena who were under active therapy for their various malignancies. I was very comfortable with that since a good part of management is formulaic and the expected potential toxicities are universally known by my colleagues.

But I was leaving an ill patient in the hospital at a time when the acute illness was not completely explicated. Thomas did not appear to be very ill but I was nervous about the course of recent events highlighted by the sudden appearance of a brisk hemolytic anemia that weakened him and worsened his known underlying chronic lung disease. He was easily short of breath and additionally had lost considerable weight and complained of pain in his belly.

By looking at his red blood cells under the microscope, I noted characteristic changes in their structure seen in an enzyme deficiency called G6PD deficiency. This inherited disorder is prevalent in the Mediterranean basin including Greece, Thomas’s birthplace. He also had been on an antibiotic known to trigger an attack. I felt comfortable that this was the cause of the rapid drop in his red cell count but it did not explain the weight loss and abdomen pain. I also was concerned about a second change in the red cells that I saw by microscopic examination. There was a small subset of red cells that appeared fragmented. This change can come from several ominous medical disorders, some rapidly deadly. I still felt G6PD deficiency was the major culprit for the anemia but I was happy he was in the hospital with plans for further testing of his abdomen while I was away. I left him in very capable hands but some worry lingered.

While away, I remotely entered his hospital chart to see what was happening and to my dismay, he was found to have masses in his abdomen that likely reflected some form of cancer with lymphoma most likely based on his known history of an autoimmune lung disorder and the presentation. But his gall bladder was distorted and I had a fear he might have metastatic gall bladder cancer remembering the appearance of a few fragmented red cells when I had examined his blood under a microscope. I knew that widespread cancer can inappropriately activate the clotting system leading to disseminated coagulation in the blood vessels. Red cells can be mechanically damaged when that happens leading to fragmentation and hemolytic anemia.

A biopsy was done and indeed he was found to have gall bladder cancer and a PET CT scan confirmed widespread disease. My capable colleague who was covering me began him on the appropriate chemotherapy. He seemed to improve but two days later he rapidly declined with worsening anemia, active clotting and organ failure in the setting of a falling blood pressure. Despite maximal support in the ICU he died at age 57. I was stunned.

While trying to enjoy my time away, I had this dreadful feeling come over me. I questioned the wisdom of leaving for vacation. Although Thomas was in the care of great doctors, could I have done better? Could I have responded more quickly to the rapid change in the clinical condition of the patient. Perhaps I am more attuned to blood changes and if I were at the bedside, could I have favorably changed the trajectory for this relatively young man? The lingering doubt of leaving an ill patient was palpable and frightening. Did I do something unethical? Was I wrong in my interpretations? Should I have stayed at his bedside and delayed “recharging my batteries”?

I do not have comforting answers to these questions. When I returned I reviewed Thomas’s illness and treatments and concluded his care was exemplary. I find some solace in this. I also noted he was found to have a deadly disease and even without the complicating blood disorder, his further life could be counted in months, not years. Nevertheless, I wrestle with the notion of whether any individual physician could alter the outcome in this setting. I believe it is possible.

An Admirable End

All of us ponder our mode of leaving this earth. Almost always, we hope to fall asleep and not wake up after a full and productive life highlighted by times of great joy and few periods of tragedy.

I was fortunate to care for an elderly gentleman who illustrated our dream ending. I met George ten years ago when he was all of 99 years of age. That is not a typo!

A decade ago he presented to a local NJ hospital with abdominal pain. A CT scan of his abdomen revealed a mass in his pancreas. Understandably, he was told by his doctors that he must have cancer of the pancreas and in view of his advanced age, he should consider going home to put his affairs in order.

He chose an alternative path and came to Columbia to further investigate his problem. A biopsy revealed a form of lymphoma potentially curable with moderately intensive chemotherapy. After careful review of his state of health , I concluded he could tolerate standard curative chemotherapy and we embarked on the regimen. George was a jokester and at every visit he engaged me and the staff with ribald and humorous stories, often involving some aspect of his life. Somewhat surprisingly, he breezed through the treatment and had a prompt complete response without appreciable toxicity. I was both relieved and very satisfied with the outcome. He would have died if he followed the initial medical recommendation and I hoped I bought him one or two more years, thinking it inconceivable that he could live much beyond 100.

So, the years went on with regular visits with George and his amazingly supportive wife. It became clear he was cured and by God’s Grace he was imbued with great longevity. In fact, we sent blood samples to researchers at Harvard studying the genetic make up of centenarians. There was a gradual decline in his mental acuity and the jokes became repetitive and then truncated. But he always smiled and his wife and family were most appreciative for his longer lease on life. I began to think he might actually become the longest living man on earth!

It was not to be. Recently, I had a phone call from his son. My secretary’s message to me was that he wanted to know how to make a donation to Columbia. I suspected I was going to hear about my friend’s demise. I was not wrong.

George passed on at age 109! HIs son described his last day. George had his favorite lunch of gold fish crackers and ice cream. He then had dinner with his wife and went to bed. He did not wake up! He had not suffered a painful or debilitating terminal illness. He was most fortunate.

I have no expectation of living as long as George but I pray for an ending such as his. May we all be blessed with his good fortune!

Collateral Damage

Two recent patient experiences illustrate the impact family stress has on the perception of illness. These two patients in particular are dealing with aspects of Alzheimer’s Disease in their family life and both have had physical complaints suggesting to them that their cancer was active. Both made earlier than expected visits to see me with their concerns and it was not immediately apparent to me that what was happening was really anxiety emanating from their worries about a loved one with Alzheimer’s Disease.

Phyllis came to see me last week complaining of dizziness and a rapid heart beat with some sense of inability to breath. The symptoms were episodic but because she carries a diagnosis of marginal zone lymphoma of the lungs, she understandably was frightened her disease was returning. I ran through the usual litany of questions such as did she have a fever, night sweats, weight loss, cough or chest pain. No was the answer to each inquiry. I was comfortable thinking her symptoms were unrelated to lung lymphoma but I was hoping to solve the puzzle she presented and when I asked her when the symptoms first appeared, she said the first episode happened after she and her husband had visited their accountant a few weeks before. I asked if it was a bad visit thinking they might have some financial difficulties that led to anxiety and perhaps a panic attack.

She started to cry. I was not expecting to hear what followed. She disclosed that she recognized for the first time that her husband was probably manifesting the first stages of Alzheimer’s Disease. She had previously noted that he had become forgetful and she hoped it was age alone. But at the accountant’s visit both the accountant and she became quite aware something more serious was afoot. She cried some more. She could see her future was going to be increasingly burdensome. I assured her that the lymphoma was not a concern, hoping my meager reassurance might improve her spirits. She thanked me, composed herself and made an appointment to see me in six months. I expect our future visits will be more focused on her dealing with her husband’s illness and less on her own health.

I have taken care of Doris for 15 years. She is 50 and a breast cancer survivor who works at my medical center. We have become good friends and she returns to me for professional advice when something bothers her. Lingering in her mind is the pervasive worry of cancer recurrence, an almost universal theme for cancer survivors.

Recently, she called and made an appointment. I expected a routine concern about a pain that suggested to her that her cancer might be active. I was not surprised when she started the conversation stating she felt a pain in her chest and it worried her. A few more questions led me to conclude the pain was inconsequential. But she wanted to talk more. I knew she was the sole support for her ailing mother who was in the advanced stages of Alzheimer’s Disease. So I asked how it was going.

Doris then described an interesting nexus of her mother being close to death while her daughter was about to give birth to a child. Clearly Doris was most concerned about her mother’s impending death. She related how she had come to cope with her mother’s confusion and delusions. Doris told an important story about her mother who announced some time ago that she was upset because during a war she flew a plane and she was given the task of rescuing children. She was upset she did not save enough children but she told Doris that she had earned a medal that she was going to soon receive. Doris knew this was a complete fabrication but chose to go along with it thinking that a confrontation would serve no purpose except make her mother more unhappy. Soon her mother’s birthday approached and Doris arranged to get a medal and printed a certificate of commendation. She presented them to her mother on her birthday. Her mother beamed with great pride and appreciation!

Her mother then began an accelerated process of deterioration.  Clearly Doris was upset and it became clear to me that her physical pain complaint was a somatic manifestation of her anxiety. I gently suggested she spend more psychic energy looking to the future and the imminent arrival of her first grandchild. She seemed relieved and left in better spirits.

A few weeks later, I ran into Doris in the medical center and she was smiling and content. She showed me pictures of her grand daughter and she seemed so happy and relieved.

Both patients illustrate the power of emotion in magnifying somatic concerns. In cancer survivors, this typically leads to a concern for cancer recurrence. The emotional pain is immense, both with regard to the stressor and with regard to the pervasive fear of cancer recurrence. Thankfully, I was able to discern the real problem and did not have to subject the patients to expensive and fruitless tests. Reassurance and insight paved the way for them to leave the office confident that cancer was not the cause of their distress.

A Human Tragedy

For those of you hoping for a happy ending to this piece, I apologize in advance. I bring it forward though because it struck me to the core and it may inspire us to frame our lives in a way to avoid this tragedy.

My first patient this morning was a pretty, fragile, slight woman, age 55, who has lived with metastatic breast cancer for eight years. She finds it harder to be optimistic as the disease becomes recalcitrant to therapy and she perceives the certainty that her life is destined to be cut short by the disease. Even so, at the moment she is in a steady state and functioning well except for the loss of function of her left arm and hand by disease in the nerves that control the arm. Treatment has been successful in arresting the damage but the arm remains useless and she lives daily with this reminder that her cancer can wreak further damage to her vitality at any moment. It frightens her a lot.

Today’s visit was a crying session that ran well beyond her allotted 15 minutes. She required my empathic attention and even after 30 minutes I could not improve her spirits, in large part because of what I will describe now. Parenthetically, keep this story in mind when your doctor is running late because it is possible his/her attention and expertise was required for someone else’s emergency.

I knew Judy had a difficult life despite her innate intelligence and good looks. She married wrong twice and and had a daughter with each husband. The older daughter has accompanied her mother to the office at times and clearly has been supportive.

But is was the younger daughter that brought out the tears. Judy was so upset because she felt her time was short, again based on the daily reminder of her arm not working. She knew her cancer could not be eradicated. She was estranged from her daughter and she described a horrific set of circumstances that led her to conclude she could never rescue her daughter from the grips of her ex husband who had convinced the daughter that Judy had no interest in her welfare. It was heartbreaking and the saga she described was punctuated by family members and her ex-husband trying over the past eight years to hasten her acceptance of the cancer while at the same time dissuading her from chemotherapy. She had the pernicious feeling that they wanted her to die. They were reluctant to help her with transportation to the doctor when her arm stopped working. They wanted to put her in a nursing home although she is fully functional and actually now has engineered her car so she can drive. There is an undercurrent of cultural and economic dissonance, of a woman who never quite found her way in life and who made some poor social decisions and now is suffering immensely.

At her core, Judy loves her daughter. She is desperate as any good parent is, to rescue her from the father who is poisoning her mind, reconcile with her, heal any wounds and leave her daughter in a better place when she passes away.

It was a heart rending beginning to my day and I had no words to comfort her except to encourage her to reconcile with her daughter. I felt completely inadequate. I know I can still find medical therapies to curtail cancer growth for a while longer but I have no capacity to fix a deep seated social problem that is tearing the heart out of my patient. And I know that it is not likely to be solved in Judy’s life time. As Thoreau said, “Men (and women) lead lives of quiet desperation and go to the grave with the song still in them.” In Judy’s case her desperation was palpable and not quiet. The song in her life will never be sung. It broke my heart to hear her story.

It did remind me that we should not let problems with family and other loved ones fester like this. We all should work hard to heal wounds before it is too late to do it. I fear it is too late for Judy and for this reason, I share her story so others can work to avoid this deep heartache and tragedy.

“Thank You”

“Thank You” is a frequently used term that greases social commerce. It speaks for appreciation and sometimes gratitude. Its power to convey these positive feelings is blunted by overuse. Unfortunately, our language has a paucity of other terms to employ when one wishes to convey genuine appreciation and gratitude to someone else.

This has come to mind for me because of two recent patient visits that highlight the need for a better way to express genuine gratitude to another person.

In my position as a practicing oncologist, I have become comfortable with patients and family members being very grateful to me for perceived powers to return someone to good health after facing a deadly illness. At times, I am taken aback by the emotion behind the “Thank You”. Since my daily professional life is involved with matters of life and death I have become comfortable with great outcomes as well as the disappointment when someone dies. However, I need to remember that from a patient perspective the disease they are facing is a singular event in their lives.

Most recently, a woman who has survived breast cancer and who is someone I am happy to consider a friend, was frustrated and very worried when another physician ordered a CT scan for possible gall bladder disease and an incidental finding was a bone lesion that, although quite likely to be benign, could possibly represent a metastatic lesion from breast cancer. Like most modern radiology interpretations, this was in my view a clear over read and I had no worries about it. But my patient was scared to death and the other MD chose not to pursue the lesion with another test. My patient called me in tears and asked me to intercede. Although, I had not ordered the test that showed the anomaly, I knew only I could settle the issue to her satisfaction. I ordered another test and as I fully expected, the lesion was proven to be benign. I considered this a simple intervention, one that appeased my patient. However, I had forgotten how emotional she had become with her perception that her cancer might have recurred. So, when I saw her at her routine surveillance visit some months later, I was taken aback when she repeatedly and emotionally thanked me for stepping up to settle her mind about her worries. I was happy to be the recipient of the gratitude and thought there should be other terms to better express her emotions. I am not sure what they would be but her “Thank You” was far more meaningful than most that are proffered.

I “inherited” an older patient when a former colleague moved to another medical center some years ago. His is a remarkable story involving a rare disease called amyloidosis that had infiltrated his liver and caused the organ to fail. The underlying disease lived in his bone marrow. At the time his liver was failing, he was considered too old by several very well regarded transplant centers to be eligible for a liver transplantation, the only medical intervention that could save his life. But because the inciting disease lived in his bone marrow, a bone marrow transplantation was considered necessary to avoid damage to a newly transplanted liver. No medical center would take on this arduous sequence of transplantation except my medical center. He survived these transplantations twelve years ago and now at age 78, he has been very grateful for his life. Unfortunately, last year amyloidosis again became active. His liver remained healthy at the time but I knew that time was not his friend and I offered him a therapy that recently was found to be successful in suppressing the disease. And it was relatively nontoxic. The therapy was well received and tolerated and the data strongly suggested amyloidosis was again arrested and quiescent. At his recent appointment when we reviewed the information that strongly suggested he could do well for years to come, he and his wife somberly thanked me. I could tell they were very moved by the good outcome and his new lease on life. I felt it was all in a day’s work but then I remembered that “Thank You” can carry incredible emotion and that there are no other words that can express that important feeling.

 So, why do I dwell on this? Because I can find no other words to express my gratitude to my mentor Dr Arthur Bank, who passed away recently from a difficult cancer problem. He died as he lived, full of life and with no regrets. He was passionate about medical science and patient care. He was my beacon for all of my professional life and I can find no words to express my gratitude to him other than THANK YOU! I will dearly miss you.

Terror In The Night

Three days ago Myrna, a long term patient of mine with a very difficult bone marrow disorder called Myelodysplastic Syndrome (MDS), called me to her hospital room to say good by. I brought my nurse and colleague Susan with me as I assumed the discussion would be difficult and emotional. I was not wrong.

I met this nice elderly and very independent minded woman about two years ago when her bone marrow began to fail her and she found it difficult to maintain a very active life style including a busy practice of interior decoration, movie going and enjoying frequent social gatherings with her many friends. I learned when I met her that she was widowed twenty years before and her husband had been a professional Jazz musician. She quipped that her salty language was a direct consequence of the musicians’ world she lived in for quite a few years. I could tell she considered that time to be unique and special. But it was also very clear she enjoyed her freedom and independence and felt that the assault from this illness was not fair to her desire to live life fully on a daily basis. She angrily complained about her inability to party or get out as she would like. But always with a wry smile.

The disorder was treated sequentially with all available therapies including experimental drug treatment to no avail. She had periods of good stamina and she loved to talk and reminisce. We became fast friends and we enjoyed swapping critiques about various movies and restaurants around town. She LOVED New York City!

Recently, her bone marrow function declined precipitously and I was concerned she might be transforming to Acute Leukemia, the dreaded and usually fatal terminus for patients with MDS (Thankfully this occurs in only a subset of such patients.) Concomitantly, she was struggling more with fluid overload issues when she was transfused and a transfusion reaction with lung congestion precipitated the admission to the hospital.

Initially, she improved and in fact I held great hope she could be well enough to get back home and be a candidate for another experimental trial. Her bone marrow had not moved into Leukemia but remained barely functional. In fact, she seemed enthusiastic about the prospects and over several days she gave me encouraging reports that her breathing was better and there was no fever or infection. I told her about a movie I had just seen called The Great Beauty, an Italian movie nominated for an Academy Award that I knew she would love to see when she got back home. We promised each other another 5-7 days in the hospital would do the trick and she could then return to a constricted but useful further life while I tried to better improve her bone marrow function.

So I was very surprised to get her message the next day that she had decided to be transferred to Calvary Hospital, an acute care facility for terminally ill patients that does a superb job in maintaining dignity while supporting a patient in the active stages of dying.

With some trepidation, Susan and I entered her room where she was sitting on the Throne, her bedside commode. Regally she moved to a comfortable seat and commanded us to sit down for a talk. What we heard next was a beautiful and heartfelt soliloquy that tenderly described our relationship together. She thanked us for “helping me stay who I am”. She pointed out other MDs who were stodgy and attempted to “keep me in place”. In even and sincere tones she described her gratitude to us, her love of NYC calling it a “miracle”, her ability to earn a bachelor’s degree at age 40, her love of grand parties with flowers bedecking her place and the smell of gardenias filling the air and in particular her love of movies. She is convinced it is the one art medium that teaches the most about life.

What led her to decide to give all of this up was the terror of the night before when she could not breathe because of an accumulation of fluid in her lungs from a blood transfusion. She considered this to be the worst of all bad feelings she has had and she could not conceive of feeling this terror again. With great sadness but on her own terms, she chose a path of comfortable dying rather than taking a chance with further treatments and the resulting toxicities.

Having witnessed many patients traversing the territory she was in, I must say her approach was dignified, beautiful and rare. She was at peace with the decision and had the important opportunity to say good by to people she loved. Susan and I were grateful to be considered among them. With tears in my eyes and a stammering voice I thanked her for all of her kind words and friendship that bonded us together. We kissed and I left knowing I would never see her again.

Among my regrets is the knowledge that she will not live to see The Great Beauty, a movie that would also have added to her lexicon about life and death.