THE AUDACITY OF HOPE

Today, I met with the wife of one of my late patients who died this summer after a very long battle with prostate cancer. The appointment was arranged by our social worker, who thought that bringing Mrs. __ back to meet with her husband's providers would be therapeutic for her. Mr. __ had been diagnosed with metastatic prostate cancer over 10 years ago and had responded very well to initial treatment until I met him a little over 2 years ago. Mind you, the average life expectancy for patients with cancers like his is about 3.5 years. During the course of his various treatments under my care, his wife always accompanied him to his appointments, and she kept him honest by not allowing him to downplay side effects and symptoms. I could tell that they had a very loving marriage by the fact that they seemed to "bicker" in a very endearing way during their visits.

For much of the visit today, we just sat back and listened to her recount the tale of Mr. __'s final days. She spoke freely and without prompting about the symptoms he experienced and about how he did not seem to be in pain at the end. She was tearful through much of the visit and became quite upset near the end of her account when she described how Mr. __ had stated that he had wanted to die at home but that he had become very short of breath before his passing, which prompted her to call 911. The paramedics arrived, and he was taken to the hospital, where he eventually passed away within several hours. She had been married to him for 40 years, had given him 3 children, had been with him for every step of his journey with cancer, had given him his medicines, advocated for him with his doctors, and served as his primary caregiver when he went on hospice, but she said she felt as though she had violated his dying wish to pass away at home and hence had let him down. She thanked us and said she felt blessed to have us care for Mr. __ and her, but I could sense that she felt as though he had died in vain.

I wanted Mrs. __ to know that her husband's life and his death had great meaning to all of us in the room. When I see patients like him, invariably they have read the statistics and know how grim their prognosis may be. They are looking for hope- not false hope, but the possibility that their cancer may not take them too soon, that they might make it to their 12 year-old son's high school graduation or their 21 year-old daughter's eventual wedding...someday. I always bring up the outliers, like Mr. __, with these patients, and I know it provides them some relief. Although he never knew it, Mr. __'s course has brought solace and hope to innumerable patients whom I have encountered since meeting him. I shared this with Mrs. __ today because I thought she needed to know what her husband's resolve, strength, and his story meant to me and to countless other patients today. I thought she deserved to know that today.

Afterwards, we hugged and held each other tight, with no attempt to fight back the tears, and no other words were necessary.

AND SHE'S OFF

Little Cate started walking recently, and there is no stopping her now. Here is one example of her new-found ambulatory skills.

THE TRUE FACE OF HEALTH CARE REFORM- UPDATE

I was informed by our Social Worker that Mr. W. qualified for a subsidy by my hospital, and he was eligible to receive his anti-cancer treatment one day later. Safety nets such as this help seal some of the many cracks in our health care system, but they are band aids and do not apply to the 40 million Americans who lack health insurance of any kind.

You can share your own health care (horror) stories at the Obama administration's health reform site.

THE TRUE FACE OF HEALTH CARE REFORM

I was confronted by the tear-strewn face of a patient's wife today. I had spent 30 minutes explaining to the patient, Mr. W., and his wife that he needed to start shots to lower levels of testosterone, which acts like fuel for prostate cancer cells, because his cancer had recurred and was growing rapidly. That discussion and an in-depth overview of the many side effects of this form of medical castration drew no tears. It was only after the couple who has Medicare, without an insurance supplement, were informed by the clinic that their 15% share of the cost of these $4000 shots, given every 3 months, was $600 that a handkerchief was necessary. They were not able to afford this shot as they are on food stamps currently and have exhausted their savings. They left without receiving this non-curative, but life-extending and symptom-reducing anti-cancer treatment today.

The 'birthers,' 'tax patriots,' and Republican Congress talk about health care reform as an affront to humanity, as a form of socialism, and as the end of civilization as we know it. They see Obama as the enemy... as the Joker... as a shadow of themselves. They do not get it or are blinded by their own racism or desire to see the President and the Democrats fail.



Anyone who has had a recent medical bill or a serious medical illness, whether or not they have insurance, clearly understands and can explain the fierce urgency of now when it comes to health care reform. The aforementioned opponents of reform need look no further than Mr. W and his wife's tear-strewn face (and their own faces in the mirror) to see the true embodiment of those whom our medical system and society fails everyday.

A HAPPY MARRIAGE

Last night I finished reading the new novel by Rafael Yglesias entitled "A Happy Marriage." It is easily the best book of 2009 and perhaps the best book I have read in the the past decade. You may have heard about this novel on NPR, which details a couple's relationship over thirty years. The main character Enrique Sabas, like the author, published a novel as a teenager and is a screenwriter, and the novel details the lives of Enrique and his would-be wife Margaret Cohen, who eventually comes to struggle with cancer. Of note, Mr. Yglesias was married to the artist Margaret Joskow for thirty years, and she passed away of bladder cancer in 2004. It is hard not to speculate that the events which unfold in this book are largely autobiographical, but Scribner and Mr. Yglesias clearly offer this book as a work of fiction. Only Mr. Yglesias knows for certain what details from the book actually occurred and which are fictional, but the reader is allowed a sneak peek into Enrique's and Margaret's life.

The book shifts alternately between the past and present in the lives of this couple. In doing so, the author takes the reader on a roller coaster ride of a marriage. Through much of the novel we are left to wonder whether this truly was a happy marriage, and the question of what it means to love someone remains unanswered to the protagonist and the reader until the very end. The protagonist, Enrique, is what gives this book its life and its verity, and I cannot recall another literary figure with whom I have felt a greater kinship. This book, more than any I have ever read, made me think about my own upbringing, my own choices, my own shortcomings, and my own marriage and family. I also thought a lot along the way about the difference between pleasure and love.

Pleasure is a state of gratification due to another person- being with someone who always has the witty quip, the seemingly flawless body, the ostensible disinterest in anything outside of you. This is something that is commonly experienced early on in relationships- think the third date after the incompatibles have already been weeded out in favor of the possible soul mate and the nerves have been calmed since the first date (see "A Happy Marriage"). This state, like that engendered by a good drug, is utterly euphoric but also unsustainable. As one spends more time with an individual (dating, marriage), the whole of a person is exposed day in and day out. One might call this revelation a person's true self, but that would seem to suggest that early interaction between two people is mere play-acting. I think this is an oversimplification. People are complex. They want to be accepted before they allow themselves to reveal the parts (which are no more "real" than those initially divulged but) which are less likable.

Love, on the other hand, is a state of affection for another person in many cases despite that person and their needs or shortcomings. Anyone can find the character in the romantic comedy (think Zooey Deschanel in "(500) Days of Summer" or Julie Delpy in "Before Sunrise") winning, but in our day-to-day relationships which are often suffused with disagreements, differences of opinion, diapers, and an utter dearth of emolument, it is easy to feel unfulfilled. Show me someone with a long view of relationships who can still appreciate and enjoy the person with whom they share that quotidian, seemingly banal existence, and I will show you love.

I suppose what drew me in to Enrique Sabas and Margaret Cohen was the fact that Mr. Yglesias wrote a book about what he knew best- love, life, loss, and longing (but not necessarily in that order). In this blog, I have attempted to write similarly, perhaps with some success, because to write about that which one does not know or does not feel rings hollow and offers no comfort to the soul (one's own or one's audience's). In that sense, there is no more profound book than "A Happy Marriage," which revealed to this reader how lucky he is/how flawed he is and exactly what the definition of a happy marriage is.

In a book review, i.e. plot synopsis, from the New York Times, the critic Dinitia Smith stated that in this book, "he (Yglesias) has found the novel of his life." Her words refer less to Mr. Yglesias' "autobiography" than to his achievement. I leave you with a passage from "A Happy Marriage," which I found to be particularly poignant. I hope to not lose sight of these words and this book in my own daily life with my wife, my children, my family, my friends, and my patients, but Mr Yglesias has done his part to make forgetting these truths quite difficult.

"In that pre-dawn twilight, returning from his father's death to the life of his wife and children, he had a dim consciousness, saw a faint outline of the rampless bridge between birth and death, and death and birth, that people traverse all their lives convinced they are on a highway to somewhere new."