I don’t know if it’s the shorter days of winter, or the busier days in the laboratory, but nearly two weeks have passed since I’ve written anything here and it seems like only a few days. It is certainly not for lack of good material. I keep two folders – one on the desktop of my computer, and one in my backpack – of items that catch my interest and would make for interesting launching points for essays. As a result of my little hiatus, both of these folders are now bursting with material.
I’ll have you know (if you care or not) that the time away from the weblog has been time well spent. I finished a couple of Ian Rankin mysteries and am halfway through Philip Roth’s The Plot Against America. I’ve also been doing some home upkeep having discovered the magic of Elfa shelving, and most importantly, we got a little rest and relaxation time in this past weekend with a quick trip to New York where we ate and ate and ate (as you can tell, we spent our time on the upper West side).
It was at a deli that I snapped this picture:
You know, when I saw this sign, my first thought was that it seemed awfully quaint, the notion of grandson-doctors being so revered. In fact, in this age of less-than-satisfied healthcare consumers, the idea of any doctor being revered seems a little hokey and a little outdated. I snapped the picture more for what I felt was irony that the only place that one would celebrate someone becoming a doctor would be in a New York deli (and a faux-deli at that, what with Artie’s being only 6-1/2 years old).
Well, today I had an set of experiences that made me have a little hope for the way the profession is viewed. As I’ve mentioned before (and will invariably mention more frequently in the near future), I am involved in the Pan-Massachuetts Challenge, a 192-mile bicycle ride that raises money to support the Dana-Farber Cancer Institute. And, as I’ve mentioned, last year I raised a little bit of money in honor of my patients and their families. I was very lucky to have the staff of the PMC take notice and as a result I was invited to talked to the first-year PMC riders who raised more than $6,000 each – no small feat in these days of tight household budgets.
I was told that I’d have 10 or 12 minutes to speak, which is a fair bit of time if you plans things properly. Having been so busy in the lab, I didn’t have all of the time that I would’ve liked to prepare in advance. A month of so ago I scratched some barely-legible notes on the back of a piece of paper that I’ve been carrying around in my backpack, but it wasn’t until 10:30pm last night that I had time to try to make a speech out of it. It took me about three hours, but eventually I managed to assemble something that seemed pretty good. One of the themes that came out of this speech was the need for oncologists to talk more about what it is that we do. This is not such an easy task. I can tell you that nine out of ten people who learn that I’m a pediatric oncologist look at me as if I just told them that my dog had been run over by car. One out of ten, on the other hand, “get it”. They understand how amazing this work can be, how lucky we are to be able to serve our patients, and the joy of living that comes from living the full range of emotions with your patients. In order to make the other nine people open their eyes to the needs of oncology, it’s going to take a little something more than just showing them pictures of kids without hair. It’s going to take a little evangelizing.
I’m going to reprint the speech pretty much in full, because I think that it gets the point across. It was written to inspire those who rode in the PMC last year to gear up for another year of fundraising. However, I hope that it will inspire the occasional reader here to consider enlisting in my efforts this year.
First, I’d like to thank Jothy [a 35-year survivor of osteosarcoma] for the generous introduction. I had the privilege of meeting Jothy a month ago after Billy [the director of the PMC] introduced us, and was immediately captivated. He doesn’t know it, but he has come to represent to me the most vivid and exciting picture of cancer survival that I’ve seen – and one that I am excited to paint for my patients and their families. In fact, I truly long for the day when my five-year-old patients are his age – hmm … that would be, what, thirty years from now, Jothy? As I said, thirty years from now, when, in between telling them that seventy really is the new forty, and yes you can can still practice medicine at this age, and yes that really is my real hair, I will look forward to seeing them and hearing how their lives unfolded.
I’d also like to thank Billy, Meredith and the entire PMC staff. I certainly never expected to be standing here. It is because of the event that they’ve nurtured for twenty-seven years that I have the opportunity to share my thoughts with you today.
I must admit that it took a great deal of time and thought to determine what I wanted to say this morning. I usually have no problem going on at length – in fact my patients, their parents, and the medical students and residents that I’ve taught, my wife, my brothers – all of them would likely say that in fact I do have a problem: that of going on at length. But often in those cases I’m in a position where I have some bit of knowledge to convey or share. This morning is somewhat different.
To some extent, I feel as if I’m preaching to the choir. You would not be seated here, enjoying this breakfast, were it not for your remarkable accomplishment as first-year riders in the Pan-Mass Challenge. I probably have little need to inspire you to raise money to support the fight against cancer – you clearly are a motivated and inspired group. I also have no doubt that many of you are personally connected to the field of oncology – perhaps by a parent, a spouse, a friend, or a child. So instead, I’ve decided to share my inspiration for last year’s ride and fundraising with you – not so much to convey a strategy or a technique – but rather to share with you a mindset, and a way of seeing the role you play in the lives of the people around you.
As Jothy mentioned, I’m now a 3rd year fellow in pediatric oncology. A little over a year ago, in December of 2005, after hearing about, and thinking about the PMC, I had a vision, and a sense of possibility that was exhilarating enough and powerful enough to bubble up through the pain, the tears and the exhaustion that comprised what had been the previous 18th months spent as a clinical fellow in pediatric oncology at the Dana-Farber Cancer Institute and Children’s Hospital Boston. This was no small thing, I might add. It is not really possible to describe in the time allotted, and in fact may be impossible to describe in any reasonable amount of time, the singular experience of becoming a pediatric oncologist. This goes far beyond the long hours, the time away from my wife and friends, and the sheer volume of information to be integrated. It has to do with the unique role that pediatric oncology fellows occupy in the care of their patients. From our very first day, we are assigned patients as they come in – often a day or two after their initial diagnosis – and they are ours to care for much like we’d care for our own children. They become as much a part of our lives as we become of theirs. I embraced this role as tightly as I’ve embraced anything in my life and as such I had the privilege of walking every step with dozens of children suffering from dozens of types of cancer. In 18 months I had experienced more of life than I had in 38 years.
When the opportunity arose to participate in the PMC, I jumped at the chance. I didn’t worry for a moment about the fundraising because I knew that if I could simply find a way to share with others what I had witnessed in my training, it would be impossible for them to not want to help. The care of children with cancer had become my mission – that research could provide cures had become my faith – that children should not suffer from cancer had become the central tenet of my faith. I knew that what I had to do was, quite literally, become an evangelical oncologist. Now, I know that this is an odd construction, especially for a lapsed Jew from New Jersey. But after hours spent trying to find a more politically correct way to phrase it, I’m convinced that this is the only one that works. I will, however, tell you that the dictionary definition of the word evangelize is, “to be an advocate for a cause: to try to persuade other people to share enthusiasm for specific beliefs and ideals.”
Having lived and shared in the victories and defeats borne by my patients and their families for 18 months, there were days that I wanted to stand atop the Dana-Farber and howl at the world and compel them to see, feel, and taste what I have since come to believe is the purest distillation of the course of human lives – to fight cancer as a patient, a loved one or a physician is to explore the full range of human capacity. I wanted everyone to feel the sensation of the air being evacuated from a small emergency department exam room as the words “I think that your child has cancer” are spoken. I wanted everyone to hear the nearly audible grinding of mental and emotional gears, and the sudden derailleur of what had been, until then, the smoothly functioning mechanism of a family’s life. I wanted people to bask in the bittersweet glow of the first smile that follows the news of a remission hard won, a smile restrained by the knowledge that months or years of treatment, and an uncertain future lay ahead. I wanted the world to feel the weight on our shoulders as we attempted to steady ourselves prior to giving the news of an unexpected relapse. I wanted the world’s spine to be frozen, as is mine every time I hear it, by the unnatural, desperate, and unearthly howl emanating from the deepest recesses of a parent whose child has just died.
I wanted the world to hear, see, touch and feel these moments because I had faith that upon doing so, the ephemera that occupies so much of modern life might be set aside, even for a moment, allowing others to have a taste of this eau de vie – this essence of life. And so with the permission of the parents of the children I cared for, I wrote their stories and shared their pictures with as many people as would listen. And it worked. Beyond my wildest expectations.
And so it is with a sense of humility and privilege that I look forward to riding in this year’s Pan-Mass Challenge. And once again I will ride to celebrate the lives of those who give purpose to the remarkable work done at the Dana-Farber, and who, in fact, give purpose to my own life. I will ride as a means to share, with anyone who will listen, the triumph of four year old Christopher (*not real name) over acute lymphoblastic leukemia – a little boy who looked up at me with pride just yesterday, to tell me that “of course it didn’t hurt when my port was removed because I was asleep”. And I will ride in order to share with people that four year olds should not ever know what a port-a-cath is, and nor should they bear such scars on their chests. I will ride in order to let people know about the fight waged by Marvin (*not real name), a three year old boy with leukemia – but just as much to tell them about his father, a large and burly contractor, who despite our being worlds apart from each other in experiences, from time to time, will confide in me fears of relapse and his sense of helplessness as he walks hand-in-hand with his son into a future filled with a lingering sense of uncertainty.
I will ride to spread the story of Douglas (*not real name), a little boy diagnosed with a spinal cord tumor two days before he was born – a child whose ability to walk today was made possible through the most extraordinary efforts of a team of over forty people. And I will ride in honor of his parents who have honored us by allowing us to care for their child. Their lives have been upended as a result of his medical needs but I will ride to let people know that despite what may very well be years of rehabilitation, they have never taken for granted what is truly a modern medical miracle. And this year I will dedicate my ride to my patients Allison and Jeff – two teenagers who died last month, Allison of complications of a stem cell transplant and Jeff of Ewing sarcoma. I could go on for hours about each of them, their courage, and their suffering, and while I will be riding in each of their memories, I will also be riding to let the world know that we should never see children lined up outside of a funeral home to mourn their friends.
I will ride so that I can share with people all that I have learned by bearing witness to the lives of these children and their families. I ride to share with others the gift given to me by these children. It is the gift of their strength – the resiliency and an untarnished hope that pours forth effortlessly from these children – a strength that somehow manages to support and inspire their parents, their siblings, their doctors and their nurses. It is this effortless love of life that breaks through their disease and makes the Jimmy Fund Clinic one of the least unhappy places I know.
These are the reasons that I ride – they are the sum of my experiences and the product of my beliefs and ideals. Yours may be the same. They may only overlap. They may be entirely different. No matter. It doesn’t change the message that I hope to leave you with. When you go forward to tell others about your next PMC ride – whatever your motivations are in this fight against cancer. Whatever brought you to this place and moment in your lives. Whatever it is that makes you willing to pedal that one next mile. Tell everyone. Be an evangelist for this cause. Broadcast your faith in our ability to fight this disease and the importance of our efforts. Allow the passion that got you here today to infect others and spread from person to person. Come to the Jimmy Fund Clinic – sit in the waiting room and let that essence of life touch you – and then go out and touch others.
The feedback that I received from this leads me to believe that it is still possible for physicians to be viewed with a less jaundiced eye – it will take a little bit of evangelizing on our part, and a little bit of faith on the part of our patients, but I believe that we still have a great deal to offer to patients in the form of hope and excitement for what our efforts can bring in the future. If we’re willing to extend ourselves and share our honest experiences with patients, and to connect with them on an emotional level as much as we try to connect with them on a rational level, they may be more like to put their faith in us again.