The Doctor Factor Indeed

There is one more article from the June 23 issue of Newsweek that I have to write about, as it strikes a chord with me and I know it would strike a similar chord with many of the cancer survivors with whom I have worked as an advocate. The Doctor Factor is an important article that raises the issue of compassionate care.

I will say right now that I never met my stepdad John's oncologist. From the way John and my mom would describe this guy, he was big, gruff, and all business. I don’t think he was particularly offensive, but he did not exactly ooze bedside manner either. I'm sure he treated John as best he could, though the more I learn about chemo cocktails and New York's more prominent oncologists (who treated many of my colon cancer survivor friends), the more I feel like this guy was just not invested in John's treatment. Though, to give the oncologist the benefit of the doubt, John's cancer might have been so advanced there was really not much that could have been done beyond extending his life the 20 months that his generic chemo did. We never asked what stage he was - John made that choice and we had to support him in it. So, there's a lot I will never know.

What I do know is that many of my survivor friends went to the same handful of doctors, and have great relationships with them. I have never met a survivor who has heard of John’s oncologist. I have met some of these other doctors and they are absolutely wonderful people. Newsweek profiles a few more fabulous-sounding doctors, from D.C., New York and Boston. The article discusses the importance of genuine doctor-patient bonding, and how these relationships enrich the treatment experience for both parties. Compassionate doctors motivate patients to fight harder. Compassionate doctors don't spout pessimistic statistics. Being a compassionate doctor prevents burnout.

So why do so many doctors lack the very bedside manner that never fails to positively contribute to their patients' journey?

I can't imagine what being an oncologist is like, and I could never do it. But, trying to put myself in that position to answer my own questions, I suppose it's easier to not engage. I mean, how many patients do these doctors have, with how many different cancers, at how many stages? How can you possibly invest personally in everyone?

But how can you not? When I was the coordinator of the NYC chapter of the Colon Cancer Alliance, there were nights when I would come home from running a volunteer meeting and just cry my eyes out. The stories that came out of this one group of people were so surreal, so overwhelming. Stories of miracle responses to chemo, dozens of surgeries, fighting insurance companies. Stories of survival. Stories that bring goosebumps to my arms as I type - because I knew these people. I wanted to know them, wanted to befriend them, wanted to connect with them. And these connections have enriched my life more than anything.

This post is not a tsk tsk to oncologists who lack social skills or choose not to use them with their patients. Everyone handles tough life stuff differently, and the fact that there are people out there who choose to devote their lives to treating cancer patients is miraculous in itself. But I'm glad that Newsweek is making a point that compassionate care does make a difference. Because it does.

Here is What Cancer is, By the Way.

I have to point out this article (and its multimedia incarnation online) from the June 23 issue of Newsweek. The article is cowritten by Robert A. Weinberg - a name I knew sounded familiar to me - the author of One Renegade Cell, one of the books on my reading list. And frankly, after reading this article, I'm not sure I even need the book (but of course I will). This article gives a great, concise, easy to understand introduction to what cancer is, how it starts, and the lifestyle choices that are in our control to lessen our chances of getting it.

One of my initial motivations for starting this blog was that I, a passionate cancer advocate, could not answer this simple question: What is cancer?

I'm getting there though, and I could probably explain it myself, because for such a complex disease, it starts quite simply - but I'll leave it to Dr. Weinberg this time:

"All tumors begin with one renegade cell [and yes, quoting his own book title is what led me to realize who he was]. Initially the cell is just one of about 30 trillion or so in the body. It looks no different from the cells around it, and, like those cells, it divides only if the organ it's part of needs it to divide. Then, even though the organ around it has enough cells, the renegade cell begins to multiply uncontrollably: one cell becomes two, two become four, four become eight, until the descendants are beyond counting."

It sounds so simple, doesn't it? No wonder Nixon declared the War on Cancer in 1971 - a disease that starts with just one stupid, ugly, mutant cell with a bad attitude should be easy enough to cure, right?

Yeah, not so much.

So what can we do, Dr. Weinberg? He says we can stop smoking (duh), eat foods that don't have a bunch of creepy chemicals in them (duh), and get off our butts on a regular basis (duh). This is not news to me, and it's probably not news to you. But apparently Americans can't hear this enough - our most present cancers (breast, colon, prostate) occur at a fraction of our rate in other parts of the world.

This article may not be groundbreaking, but I sure hope a lot of people read it. If my cancer reading has taught me anything, it's that this disease has a nasty way of striking at random and without bias. But there are fundamental things we can do to prevent cancer - and it goes without saying that we need to be doing them.

I suppose I won't be going out for fish 'n chips for dinner after all.

Happy Birthday, Dear Nelson

The 46664 Concert Honouring Nelson Mandela at 90

Last Friday, June 27 witnessed an historic concert in Hyde Park, London that I was fortunate to be able to attend: a musical celebration of Nelson Mandela's 90th birthday, with proceeds going to 46664, Mandela's charity initiative to raise global awareness about HIV/AIDS. So this post is not directly cancer related, but it was an event that enriched my life, and about which I wrote an objective article today for Look to the Stars that left me craving the chance to write about, well, how I felt, not just what I saw.

So here I am.

For a run-down of the performers, check out Look to the Stars or the BBC coverage.

What I really want to say is this: I got to sing "Happy Birthday" to Nelson Mandela. I got to sing "Happy Birthday" to Nelson Mandela. I got to sing "Happy Birthday" to Nelson Mandela.

How many times have we sung this song in our lives? To how many people? At how many parties, in how many silly harmonies?

It's nothing but a little ditty of a song, and yet the fact that I had the honor, the absolute once-in-a-lifetime privilege, of singing that very song to Nelson Mandela as he stood on stage, escorted by a loved one and surrounded by the evening's superstar enertainers, was more than enough to bring tears to my eyes and rolling down my cheeks. It was utterly humbling, singing this everyday song to one of history's most courageous, compassionate, visionary men.

Before this concert, Nelson Mandela ranked right up there in my mind with the likes of Mother Teresa and other such larger-than-life figures. I knew who he was, I knew the outline of his life, I knew he was a great, great man. But seeing him on stage, joining in to serenade him, and hearing him speak was just humbling.

Celebrated British humorist and actor Stephen Fry said it best when he came on stage later during the show - he spoke of Mandela's entrance and the subsequent crowd reaction and said it felt like "waves of love" were washing over the audience and crashing up onto the stage.

Indeed it did. And who wouldn't want to take a little time to frolic in that?

Boobs Boobs Boobs (A Book Review: Part I)

One of the greatest accomplishments of the breast cancer movement (besides, you know, the gazillions of dollars that have been raised for research, the groundbreaking treatments that have emerged, and the tens of thousands of lives that are being saved as a result) is that people are no longer embarrassed to talk about boobs.

I have participated in many breast cancer race events in New York City, and I remember the last time seeing a group of women walking the race course wearing hats in the shape of bared breasts - yes, naked boobs, nipples and all. How great is that?

Part of me is envious of this movement, I have to say. Only because colon cancer is my own personal cause, to which I owe my life's greatest heartbreak, and I want people talking about butts the way they talk about breasts. I think this is happening, slowly but (I hope) surely. The Colon Cancer Alliance is starting a race event called the Undy 5000, in which participants are encouraged to run/walk in their underwear. I think this is pretty genius and I hope the event will go far in getting people comfortable talking about butts and cancer. The less fear we have in addressing these topics, the more empowered we become.

But back to boobs.

Bathsheba's Breast, by James S. Olson, was the second book in my cancer curriculum. Compared to One in Three, this read was a little harsh. If Adam Wishart had been holding my hand as I tiptoed into the acquisition of some solid knowledge about this disease, then Olson threw me into an ice bath. That's not to say I did not enjoy the book - in fact I learned a great deal from it - but it was a toughie.

Reading this book, especially as a woman, felt at times like having a male doctor with little bedside manner. Olson talks about horrible breast tumors and surgeries as if discussing a baseball game. It's gruesome stuff and he makes no apologies for that. That being said, it also gives what I have to trust is a realistic account of the toll this disease took on women hundreds (and, indeed, thousands) of years ago, which is key to truly grasping how far we have come in treating cancer. I just had to read the book in smallish doses because of its graphic nature. But ultimately, Olson sets an example for the rest of us to not be afraid to talk about cancer.

In fact, the book begins with a discussion of his own cancer - a sarcoma in his arm that recurred while researching and writing Bathsheba's Breast. Olson lost his left arm to cancer, and says, "Although I know nothing of what it is like to lose a breast, I do understand... the anxiety of confronting one's own mortality, and the trauma of saying goodbye to a body part."

Heavy stuff. And in the interest of small doses, I will continue the review tomorrow...

Another Fabulous Website: CaringBridge

I feel like I've been posting a lot about websites lately, but there are so many great free resources out there to help people, I can't help but get excited. This whole "Web 2.0" movement, as I am coming to understand it, has the potential to do such great things and enrich people's lives. It brings out the best in good people who sit at their computers wanting to do good things for the world. Who can argue with that?

Case in point: CaringBridge. It seems as if this website has been around for about 10 years, and I sorely wish I had known about it when my stepdad was sick. The site (and the non-profit organization that runs it) provides free websites to "support and connect loved ones during critical illness, treatment and recovery." Whether the critical time stems from a cancer diagnosis, a car accident, a complicated pregnancy, or anything similarly serious, this site allows for the creation of an interactive website with features including an online journal/blog, guestbook, photo gallery, an online communities so that the families on CaringBridge can reach out to each other.

When my stepdad John was sick, I remember sending out mass email after mass email, adjusting each email depending on the group to which it was sent - my mom's family, my dad's family, my college friends, my coworkers, my mom's colleagues. I didn't mind doing it, but there were many other things I could have been doing with that precious time. It would have been amazing to be able to have a website where we could post just once to update everyone, and be able to show John the guestbook entries written in support of him.

Well, if it couldn't happen for us, I'm glad that 100,000 other families (!!!) have used this service, and I hope that this organization continues to thrive.

To donate to CaringBridge, click here.