Give Support to a Colon Cancer Patient

I know it's been awhile since I've checked in with Cancer Nerd. Been quite busy with my MBA and a blog I have started with the women in my class, which you can check out here.

But today I write with something way more important. I received an email from a very good friend of mine, forwarded from a friend of hers. Please take a moment to read this and follow the link to Audra's Journey:

As most of you know one of my very best friends since the age of 9, Audra, has been diagnosed with Stage 4 Colon Cancer that has already metastasized to her liver. She is only 37 years old and after a long battle with infertility and losing her first son in-utero very late in the pregnancy she finally had Adam and Olivia her twins just 9 months ago.

Obviously, we are all devastated and shocked by this news, we are choosing to believe in the infinite possibilities and miracles!

I have started a website for her in which people can log on and read her story and journal entries. On this website you can also log onto her guestbook and send her a message of inspiration and support. Most of you know her but even if you do not please take the time to check in on this website occasionally and send her messages. Audra is a big believer in the power of thought and the more people who are sending love and light and energy the better for her healing and for her psyche to fight! I am begging that you do this for her. Lets make it a movement for her.

The website is www.caringbridge.org and her website name is: audrasjourney.When you get to the site it will say "visit a caring bridge website" this is where you enter, audrasjourney.

Thank you so much from the bottom of my heart.

Here is a direct link which should also work.

Please reach out and show your support to Audra today!

Cancer Takes a Hike

I just heard about this amazing website through the Colon Cancer Alliance September e-newsletter.

The site is called Cancer Takes a Hike, and was started by a Stage IV colon cancer patient named Andrew Stevens. Stevens was diagnosed in 2005. As he says on the site, "I had tumors in my colon, liver, spleen, and on my right adrenal gland and was given just a few months to live. Now, even after four surgeries and almost 40 rounds of chemotherapy, I still have cancer. But due to the amazing care from my doctors and nurses and an outpouring of love and support from my wife, family, friends, and thoughts and prayers of many, I am closing in on the four year anniversary of my diagnosis."

In honor of this incredible milestone, Stevens is hiking 160 miles of the Appalachian Trail with his brother and a good friend.

Fairly mind-blowing, eh? I certainly think so!

In addition to raising awareness by attempting this arduous hike, Stevens is also raising funds for the Colon Cancer Alliance. To make a donation to the CCA in honor of Andrew Stevens and Cancer Takes a Hike, click here.

Cover Your Butt! And the Butts of Your Fellow Americans!

I received an email today from C3, the Colorectal Cancer Coalition, with an urgent message and easy task.

Right now, there are three bills in Congress that - if passed - would cover screenings for three huge constituencies of Americans: the poor and underserved, the elderly and those with private insurance.

To sign the petition click here.

The three Acts are as follows:

• HR 1738: The Colorectal Cancer Prevention, Early Detection, and Treatment Act will establish a program at the Centers for Disease Control and Prevention (CDC) to provide colorectal cancer screenings and treatment for low-income, uninsured and underinsured individuals who are not eligible for Medicare.
• HR 1926/S 1164: The Colon Cancer Screen for Life Act will expand existing Medicare coverage of colorectal cancer screening to include pre-procedure visits and other reimbursements, minimizing the out-of-pocket expenses for our nation’s elderly.
• HR 3060: The Colorectal Cancer Screening and Detection Coverage Act would require private health insurance plans to provide coverage for colorectal cancer. Plus, the bill will protect anyone from being denied a policy due to their need for colorectal cancer screening.

It takes about 10 seconds to sign the petition. In doing so, you are contributing to an effort to save lives.

On the C3 website, you can learn more about colon cancer advocacy initiatives. You can also send a letter to your local Congressmen encouraging them to support colorectal cancer screenings.

Stand Up to Cancer and Cover Your Butt!

Leroy Sievers, 1955-2008

Oh gosh. This is a sad one.

Header courtesy of NPR

Leroy Sievers, a well-known journalist, died last night. He was diagnosed with colon cancer in 2001, and passed away at the age of 53.

I have been following Leroy's cancer journey through his NPR blog, My Cancer. I must admit, I didn't read it as thoroughly as I could have - the parallels to my stepdad hit a little too close to home. But the blog is astonishing in its candor, and if you have the emotional energy for it, I greatly encourage you to read it.

Sievers began the blog in February 2006, when his cancer returned after first being treated four years earlier. What began as colon cancer had spread to his brain and lung. Sievers was told he had six months to live. Two and a half years later - this morning, at 7:59AM eastern time - came the post that began, "Dear Friends: I'm so sorry to bring you this news." And it wasn't written by Leroy.

Cancer never ceases to deal bad hands to good people, which, to me, is the most frustrating thing about it.

But instead, I try to focus on the silver lining: look at Sievers' legacy. Not only did he have an exceptional career as a journalist, but he has also left us his blog, My Cancer, the accomplishment of which he said he was most proud. This blog is tragic, but full of insight and even - way down deep in there, between the lines and beyond the pixels - hope.

What was to be Leroy's final post came on Thursday, August 14th. He titled it "The Dog We Never Had," and he wrote:

"He is the dog we never had.

He's a Bernese Mountain dog. A big one. We always knew what his name was going to be ...'Spanky' ... no matter what.

The fact that he would be a toy didn't really bother us. We couldn't have a real one because we both traveled too much.

So here he is, sitting with me on the bed. My comrade in cancer.

A boy and his dog."

To me, this post encapsulates the cancer journey. When my stepdad John was sick, especially in the final weeks and days of his life, we were all swirling in a sea of emotion. But even during that tumultuous time, I couldn't help but be fascinated by how the simplest things brought him joy. Like a child. This brilliant man, a physicist and an eternal academic, smiling like a boy in the final days of his life.

I remember thinking to myself at the time, "So this is the circle of life. It's not a cliche after all." Leroy Sievers' final post captures the same feeling. "A boy and his dog." Tragically, Leroy Sievers' circle, like John's, closed far too early. But how phenomenal that he let us all inside before it did.


For complete NPR coverage, click here.

Colon Cancer Featured on WebMD

I visited WebMD yesterday and was surprised but happy - at first - to see that "Colon Cancer Symptoms" was one of the four featured article tabs (along with an article about how watermelon has Viagra-like effects... Happy 4th of July!) on the front page. How great that they are spotlighting colon cancer, I thought to myself. I clicked the tab, and a handsome and pensive man appeared next to the words "Colon Cancer Symptoms" and "Symptoms usually appear in later stages. Here's what to look for."

A further click led me to the symptoms section of WebMD's Colorectal Cancer Health Center. And again, my initial reaction was, "Wowee! Look at all this great info!" It is a good resource, with information that would be very helpful to someone who is experiencing the obvious symptoms of late-stage colon cancer, or whom has been diagnosed and needs to learn about the disease fast.

But basically, a site like this is not going to help people be any less afraid of colon cancer (or other cancers, if they are similarly discussed, which I assume they are). I know I have to understand that WebMD exists to give unbiased, factual information - and with cancer, the facts are often very, very hard to hear. So I can't wholly blame the website. It just made me feel slightly defeated, I must admit.

I wish that the site could focus more on prevention, especially with colon cancer because it is highly preventable when people are appropriately screened. Instead, the "Prevention" section is buried between "Treatment Overview" and "Home Treatment," which doesn't seem to make a lot of sense.

This issue is bigger than me. After all, who funds WebMD? How does the site make money? Oh, I know! They get revenue from all the pharmaceutical companies who advertise their drugs! And why would drug companies want to advertise on a site that says, "You can prevent this disease from reaching late stages just by getting screened regularly"? Oh. They wouldn't. Huh.

Sigh. Alright, well, moving on.

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.

Care Packages and Katie Couric

My mom has always been great about sending me mail. When I was in college, she sent me at least one piece of mail a week. I probably never admitted to her how much that meant to me - being able to open my little mailbox in the student center and see a brightly colored greeting card or - even better! - a slip indicating that I had a package to pick up. But I'm sure she knew.

Now that I live across the pond, she has gotten back into her care package mode. Though these days the packages that the mailman crams through the slim slot in our front door contain more credit card bills and other grown-up mail than fun things. But her care packages are always thoughtful and always appreciated (I hope you're reading this, Mom!).

Yesterday, I received a big cushy envelope filled with newspaper clippings, bills (told you so), and the June 23 issue of Newsweek magazine, which contains a lot of great articles about cancer. But I will get to those later. Also included in the package was a photocopy of another Newsweek piece, written by Katie Couric back in April. The article discusses the tenth anniversary of her husband Jay Monahan's death and how Katie chose to share some of the condolence letters she received a decade ago with her daughters, who were only 2 and 6 when Jay died of colon cancer.

I am a big, big Katie Couric fan. I have met her on a couple of occasions and she has always been gracious and lovely. The first time I met her was fairly soon after my stepdad's death. I had run a race in Central Park on a beautiful weekend morning, and my mom had come to the finish line. After the race we went to a greasy-yet-swanky-spoon brunch spot, the likes of which you could only find on the Upper East Side of Manhattan. And there was Katie, eating with a friend, in her exercise clothes with no makeup. My mom and I spent our entire meal debating about whether or not to say something to her, and had decided against it until we both got up to pay our tabs at the same time.

There we were, in line behind Katie Couric to pay for our diner brunch. My heart pounded as I decided to just go for it, and said, "Excuse me, Katie?"

Most of the conversation remains a blur. I remember that my mom and I quickly told her that we had lost my stepdad recently to colon cancer, so that she didn't think we were just quack fans. She immediately took off her sunglasses to make eye contact with us as my mom told her how much she admires the grace with which Katie handled her husband's death.

"You have been a model to me," my mom said. "It hasn't been easy."

Katie replied, "Yeah, it really sucks."

But not in a Debbie Downer way. In a way that sealed my respect for Katie Couric for life. It was a moment so genuine it gives me goosebumps to write about it now, years later. In that moment, two widows of men who'd lost their lives too soon to a disease that is all too preventable instantly and deeply connected. If only for a moment.

My mom and I were also at Katie's last day on the Today Show, and appeared on camera for fleeting seconds with a group of colon cancer survivors and advocates. It was a hoot!

I like to call this one Katie and Me. Heh.

Anyway, this is all to say that I respect Katie a great deal, and so was excited to be able to read a piece of her writing.

I got through the article without crying, which was an achievement. Everyone who is affected by cancer has a different story to tell, and hearing a new story always makes you reflect on your own. As heartbroken as I remain about my stepdad John's death at age 64, attempting to fathom what it was like for Katie to lose her husband at age 41 - yes, forty-one - is just impossible. To lose your life partner when your daughters are too young to remember him... it's just one of those things that should never happen to anyone.

Katie's story is one of many that fuel my passion to raise awareness about this disease in the hopes of eradicating it. It is not an easy story to hear, but I deeply admire that she is putting herself out there - as a mother, a widow, and a cancer advocate.

I wonder where my mom and I will be, what we'll be up to on the tenth anniversary of John's death. This July marks the fourth anniversary, so we have a long way to go. But I'm sure the time will fly, and I can only hope that when my mom and I inevitably reach that decade milestone, that we remain as full of grace and passion as Katie Couric.

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...

SUTV

Ok so I have been poring over the Stand Up To Cancer website and I am loving every bit of it! It has been a long time since a cancer initiative has gotten me so riled up.

There are some fabulous clips, both serious and not-so-serious, in the SUTV section of the website.

So far my faves are the PSA and the Daily Show cast. A to the Mazing.

And I will freely admit that I think part of why I am so excited by SU2C (their clever little acronym) is that so many celebrities are involved - I love the combination of celebs and non-celebs in the PSA, for example. On the one hand, this initiative combines my two passions: cancer and pop culture. But on the more serious other hand, celebrities have incredible power to do good, and it truly warms my heart to see everyone from Tobey Maguire to Susan Sarandon to Lance Armstrong rallying for SU2C.

My fellow colon cancer advocate friends and I would always lament, somewhat morbidly I admit, that no hot, young celebrity has survived colon cancer. There are plenty of young people diagnosed every year, unfortunately. And there are plenty of celebrities who have been diagnosed with colorectal cancer (Carmen Marc Valvo, Joel Siegel, Farah Fawcett) too. But colon cancer does not have its Lance Armstrong or its Sheryl Crow or Cynthia Nixon.

So if colon cancer must continue to wait for the celebsurvivor who can take the cause into mainstream pop culture and make it a little more fabulous, at least plenty of celebrities have stepped up - sorry, stood up - for cancer through this amazing initiative.

As Tesco, a supermarket chain here in the UK, has as its motto, "Every little helps."

[Which I always think is missing a "bit"... but whatev. It gets the point across.]

My Nerdy Cancer Reading List

So here is my reading list. A work in progress. I had polished off a few of these books before starting this blog, and will post on them in the order in which I read them. And if it seems like I am not the fastest reader... well, two things: a) I hope that keeping this blog motivates me to be a little more productive, and b) reading about cancer is an intense experience for me, so I intersperse these cancer books with lighter pleasure reading. So there!

Will update this list as I read and inevitably acquire more books (I am a big nerd, after all)...

Bibliography	Date started	Date completed
Wishart, Adam, One in Three (Grove Press, 2007)	15 February 2008	19 February 2008
Clinton, Bill, Giving (Alfred A. Knopf, 2007)	December 2007	26 February 2008
Olson, James S., Bathsheba's Breast: Women, Cancer & History (The Johns Hopkins University Press, 2002)	27 February 2008	14 March 2008
Davis, Devra, The Secret History of the War on Cancer (Basic Books, 2007)	10 April 2008
Patterson, James T., The Dread Disease: Cancer and Modern American Culture (Harvard University Press, 1989)
Weinberg, Robert A., One Renegade Cell: How Cancer Begins (Basic Books, 1998)
Kedrowski, Karen M. and Marilyn Stine Sarow, Cancer Activism: Gender, Media, and Public Policy (University of Illinois Press, 2007)
Greaves, Mel, Cancer: The Evolutionary Legacy (Oxford University Press, 2000)
Pochapin, Mark Bennett, M.D., What Your Doctor May Not Tell You About Colorectal Cancer (Warner Books, 2004)
Pesmen, Curtis, The Colon Cancer Survivors' Guide: Living Stronger, Longer (Tatra Press LLC, 2005)
Lendrum, Susan and Gabrielle Syme, Gift of Tears: A Practical Approach to Loss and Bereavement Counselling (Routledge, 2004)
Nettleton, Sarah, The Sociology of Health and Illness (Polity Press, 2006)
Lyss, Alan P., MD; Humberto M. Fagundes, MD; Patricia Corrigan, Chemotherapy & Radiation for Dummies (Wiley Publishing, Inc., 2005)	Ongoing - reference
Sarg, Michael J., MD and Gross, Ann D., MA, The Cancer Dictionary, Third Edition (Checkmark Books, 2007)	Ongoing - reference

What the heck am I doing here?

Well well well. This has been a long time in the making.

I have thought about blogging for the past number of years. My friend Sarah and I wanted to start a celebrity gossip/social commentary blog because we think the emails we send back and forth to each other with our cheeky comments about celebrities' latest career forays and flops, wardrobe malfunctions and/or general lack of fashion sense, accidental pregnancies, accidental marriages, etc., are quite clever. If we do say so ourselves. I have wanted to start other blogs too. I write in journals a lot, so of course I have thought about writing online instead. When I moved to London last January with my boyfriend, I came thisclose to starting a blog about our life here, and balked.

What has stopped me each time? The audience factor. Sarah and I came to the realization that we think our emails are so hilarious because they are full of inside jokes that crack up us and us alone. I don't necessarily want total strangers reading my personal journal entries, and at the same time have a fear that nobody would. Same with the London blog-that-never-was: what if none of our friends or family read it? What if no one was interested? Because surely, at the heart of every blog entry everywhere, is a desire to connect. A hope that what you write will engage someone else on some sort of level that will enrich the experience for both reader and writer.

So what finally motivated me to join the zillions of bloggers out there? What the heck am I doing here and what do I hope to accomplish with Cancer Nerd?

Some quick background information on me and my experience as a cancer caregiver and advocate: My stepdad John was diagnosed with colon cancer in 2002, and died 20 months later. He was 64 years old. Although I did not realize it at the time, I became an advocate the day the disease crashed into our lives with his diagnosis. Since John's death, I have become increasingly active in colorectal cancer advocacy. I fundraise for and run a fabulous race every year in Central Park, the Colon Cancer Challenge. From May 2006 until I moved to London in January 2008, I was the coordinator of the New York City chapter of the Colon Cancer Alliance (CCA), a wonderful advocacy and support organization. I want to get the word out there so that people know they need to be screened for this disease, and then actually follow through with their appointments. Even though colon cancer ran in John's family, he procrastinated about getting a colonoscopy until it was too late. A great man's life was cut short, leaving my mom and me heartbroken. No one should have to experience such a thing if it can be avoided. And with colon and other cancers, I have learned, it often can.

I want to help get a message out to caregivers too. I want those who are thrust into the heartwrenching role of caring for a sick loved one to know that it is ok to ask questions, to do research, to understand what is happening. When John was sick, I felt helpless. I didn't realize I could have asked his doctors why they were choosing specific chemotherapy drugs, or why they did not operate. I could have asked if there were any clinical trials available. I could have picked up a book or Googled "colon cancer" to understand what and where a colon is, and how and why they become infested with cancerous cells and tumors. Some people don't want to know. And that's ok too. But I did, and I didn't do anything about it. Well, I am now.

Being a cancer awareness advocate has made two things crystal clear to me: first, that I want to devote my life to cancer advocacy; and second, that I have a lot to learn. The members of my CCA chapter, most of whom are survivors with incredibly inspirational stories to share, would chat about different drugs and treatments, ostomies, surgeries, even body parts with which I was totally unfamiliar. At the time, I had a full-time job in addition to my volunteer work with CCA and other non-profit organizations, and in my downtime I preferred to watch "Dancing with the Stars" or read PerezHilton.com or smooch my boyfriend than Google "iliostomy" or "Erbitux" or learn about the four stages of cancer. But then I left my job to move across the pond to be with my boyfriend and, as my mom says, "take a swim in Lake Me." I am currently in the fortunate position of being unable to obtain a work visa, and I have been accepted to an MBA program that starts in the fall. So for now, I am on a pontoon boat out in the middle of Lake Me, with a giant stack of cancer history and science books for company.

I have become a total cancer nerd with a voracious appetite to learn everything I can about this horrendous disease. I want to know what it is, where it comes from, how it develops. I want to know why some people beat it and others don't. I also want to learn about the history of cancer advocacy. Who were the pioneers, who declared the "War on Cancer" and how have we not won it yet? Are we still at war at all?

As I plow through the books weighing down the bookshelves of our tiny house in London, I will post about them. I watched the PBS special "The Truth About Cancer" last night (thanks to the miracle of modern technology that is the Slingbox, I can watch my mom's TV in New York on my computer here in London) and it wrecked me and I need to explore why, so I'll write about that too. I'm not here to offer medical advice or even particularly well-written prose. I'm here for myself with a faint - but strong - glimmer of hope in my heart that my being here might help someone else.

My highest and dearest hope for this blog is this: at some point, someone who is currently coping with cancer in whatever capacity will stumble upon this humble little blog and see a post that, for whatever reason, will help them. Maybe they are looking for a good cancer history or basic science book to read. Maybe they want to know about some organizations that are making great strides against this disease. Maybe they just need to know that they are not alone.

You're not. And, apparently, neither am I.