Former leukemia patient wins gold medal

Check out these pictures of an Olympic Gold Medal swimmer who had a transplant for leukemia in 2001. Amazing!

My nephew writes me a song

Warning to any die-hard cynics: This is definitely my most sentimental posting yet! My 10-year-old nephew, Sam Chai Lynn, just wrote me a song. Since no one has ever written me a song before, I have to share it. (Just click on the title.)

Sam has been one of the main reasons I've done so well over the past few years. A vegetarian, people person, and all-around great kid, Sam has been unbelievably kind. Whether it's picking up the phone and calling me on his own or making me gorgeous dream-catchers with hopeful messages, Sam knows how to make this girl smile.

Please vote "No" on AOL poll about hot dog ad

The TV ad I wrote about hot dogs few months ago is the subject of an AOL poll right now. AOL is asking if the ad goes "too far."

Please take a minute to vote "no" on the poll and forward to your friends.

Here's the link: http://news.aol.com/health/article/does-hot-dog-cancer-ad-go-too-far/149280?icid=100214839x1208391628x1200464489

If you've read my blog, you know this ad is based on the most comprehensive (and one of the most rigorous) scientific reviews ever published. Unfortunately, the Associated Press story posted on AOL has numerous inaccuracies so many readers believe the ad goes too far. (For more information, visit www.CancerProject.org)

Help us change their minds!

Fighting cancer with friendship

John and I spent the past four days with two close friends from Seattle--Randy and Lisa Guy. The two flew out to support us in during this tough time and we had a fabulous visit.

I am so glad that I have this time to spend with my friends. Needless to say, I wasn't surprised today when my blood test showed that my counts have held fairly steady. Looks like I may not need a transfusion this week. Yay!

Inspiring book for anyone facing a challenge

I just read the most amazing book that I thought some of you might enjoy, Crashing Through: The Extraordinary True Story of the Man Who Dared to See. This book doesn't have anything to do with cancer but it does tell the story of someone who overcomes incredible physical obstacles. If you're looking for some inspiration, this is the place to find it.

Mike May was blinded as a young child but goes on to live a rich and adventurous life--as a competitive skier, an inventor and entrepreneur, an inspirational speaker, and a family man. In his 40s, he finds out there's a chance a stem cell transplant might give him back his eyesight. The procedure, of course, is loaded with risks. May's not sure it's worth giving up his already-great life. It's fascinating to watch him make this possibly life-altering decision.

(Warning: Unfortunately, the book contains a description--albeit brief--of a cruel visual deprivation experiment conducted on cats. Otherwise, it's a fabulous read.)

Another great day

My oncology nurse warned me that I could have nausea even on my off weeks, but so far, so good. I feel perfectly fine for the fifth day in a row.

I got to hike one of my favorite Potomac River trails this morning. It's a gorgeous day. Low 80s and no humidity. Just me and the turtles.

If there's one good thing about dealing with serious illness, it's how quickly one learns to treasure even the most ordinary events.

A heron on the C & O Canal

Wow, two great days in a row. No chemo after-effects so far. This morning, John and I did four miles at one of my favorite spots on the C & O Canal, Violette's Lock. We saw turtles, cormorants, an osprey, butterflies, fish, Canada geese, and herons galore. Why does anyone need a zoo when we have so much wildlife just minutes from some of our biggest cities?

Veggie Therapy

Yesterday I attended the Cancer Symposium, an annual conference put on the organization I work for. It's a fabulous event that brings together cancer researchers with doctors, dietitians, and other health professionals--all interested in how the right foods can prevent cancer.

My boss, Neal Barnard, M.D., the president of the Physicians Committee for Responsible Medicine and The Cancer Project, gave a fabulous talk about translating scientific research into policy. In other words, we already know a lot about how diet affects cancer risk but because of stranglehold the meat and junk-food industries have on the U.S. goverment, it's tough to get legislation passed to foster healthful eating.

(Right, I know "personal choice" is part of the equation, but let's face it: The feds have an enormous influence over what Americans eat. Through the School Lunch Program, the U.S. Dietary Guidelines, the Food Guide Pyramid, subsidies to the meat industry, and dozens of other programs, the federal government influences how much food costs and what Americans end up eating. Ever wonder why a hamburger is cheaper than a salad?)

There's a ton of additional information about these issues on PCRM's web site, if you're interested, but meanwhile I wanted to share one of my favorite PCRM public service announcements on the subject.

To all the caregivers

If we patients think we have it rough, think about our caregivers! What an unbelievably tough job--all that work on top of all the worry. My husband John Thomas was my primary caregiver through my transplant and of course, has signed up for another tour of duty now.

I may have gotten cancer three times, but I lucked out when I married him. He's been fabulous through it all. (Can't remember if it was my sister or nephew--while we were on a post-chemo trip to the Virgin Islands together--who nicknamed him "St. John Thomas." Corny but true.)

Treatment update: I just finished my first week of my current round of chemo (Vidaza). So far, the anti-nausea meds are working and it's not that bad. The schedule is one week of chemo, two weeks off. It may take four cycles to find out if I've lucked out again. Meanwhile, life is good.

Undersung heroes

We’re all looking for a great doctor--who exhibits our idealized blend of expertise and compassion--but anyone who’s spent any time in a cancer clinic or hospital knows it’s the support staff that often makes the difference.

I’ve been consistently blown away over the past five years by some of the nurses, phlebotomists, schedulers, and techs who have helped take care of me. Their kindness and humor has eased the journey.

From the nurse on the transplant ward who played Scrabble with me in the middle of a scary night two years ago to the tech who scored my sister a highly coveted recliner last week, I can’t thank you enough.

Pictured here are Carolyn (above) and Marie (to the left), two phlebotomists at George Washington University who take the sting out of getting stung.

Everyone should have a sister.

Here's Dina, my previously mentioned awesome sister -- with her sweet son Sam. (Pic from last summer in Martha's Vineyard.)

Dina's back in D.C. again this week, keeping me company through chemo (not bad so far), making me fabulous dinners (including a fabulous vegan chocolate cake), and just generally treating me like a Jewish princess. She's had to re-arrange her life for me, leaving her son and husband back in New Hampshire fending for themselves. Fortunately, she also left them a fridge full of home-cooked meals.

Another animal-tested chemo regime

If you don't know me very well or aren't familiar with animal protection issues, you may wonder why someone who has taken so many pharmaceuticals tested on animals can be against animal research. You may think it's hypocritical.

The truth is that using animals to develop and test drugs is a system that doesn't work very well. It's an old paradigm, one that is fortunately beginning to slowly change. A growing number of forward-thinking scientists are developing some exciting (and more effective) non-animal alternatives. These changes have been inspired partly by concern over animal cruelty but also because animal research and testing have so often failed us.

The basic problem is that animals are not good models for humans. That's why so many drugs that prove effective and safe in dogs, monkeys, or mice end up not working in humans—or actually end up being so dangerous, they have to be taken off the market. Vioxx is just one of many examples.

I'm against animal research for two reasons. My first is because it's horribly cruel. We don't have the right to subject any species—whether it's a mouse or a monkey—to a life of captivity, fear, stress, and pain for our own benefit.

But as a three-time cancer victim, I have another big problem with animal research. Who knows how much farther along we'd be—if we hadn't been sidetracked by miracle cancer cures that worked in mice but don't help humans. It's time for real progress—for animals and humans both.

If you wonder why I take the drugs, even though they've caused animals so much suffering, it's because I can't currently choose a drug that hasn't been tested on animals--and like all living beings ("lab" animals included), I desperately want to live. The current drug approval system doesn't yet acknowledge the superiority of human-focused, nonanimal research and all pharmaceutical companies must use animals to get their drugs approved.

For more information about what's wrong with animal research and what alternatives are currently available, please visit pcrm.org or www.humaneseal.org/news/070124.html.

Thinking about contributing to a cancer charity in a loved one's name? Find out about cruelty-free medical charities at www.Humaneseal.org. Helping Humans Doesn't Have to Mean Harming Animals.

P.S. Lounging on the couch with me is Fatty.

A beautiful Saturday afternoon

I know the leukemia hasn't miraculously disappeared but I feel stronger today than I have in weeks. (It's all that angel power!)

I drove myself out to one of my favorite parts of the Potomac River today and walked along one of the Billy Goat trails for about an hour.

The river level was especially low so the scenery was different than I'm used to--lots more sandy beaches and little uncovered islands.

Summer in DC is hellish (I know many of you don't agree), but summer on the Potomac is heavenly. It's very jungle-like with all kinds of summer wildflowers and lots of noisy insects and frogs.

I hope I can get back in a kayak before the end of summer. Floating down the river, looking at the herons and other birds, is one of the most relaxing things in the world.

I'm enjoying every moment of this weekend--but am ready for the treatment to start on Monday.

All best,
Simon

Angel power and Simon's status

I got the diagnosis in late July 2008: leukemia (AML).

I knew when I underwent a cord blood transplant for MDS in April 2006, it would be a miracle if 1) I survived the rigors of the transplant and 2) the transplant worked.

Given that there were no options offered for me other than the transplant, I took the leap into the great unknown.

Miraculously, it worked and I had two+ years of a remission. I knew that relapse was always a big possibility but I was busy dealing with the side effects and complications of treatment, working, enjoying the outdoors, etc., etc. The new diagnosis was both a surprise and not.

On Monday, I will embark on a new chemo regime. It's one that worked for me once before. It doesn't have a high success rate, but neither did the transplant. I'm feeling optimistic about my chances despite the stats.

The biggest thing I have going for me is the love, support, and encouragement of friends, family, and colleagues from around the country. They got me through the transplant and have given me the inspiration to try one more time.

Pictured above are Rita, Laurel, and Jennifer, three Seattle angels who flew out at a moment's notice--joined soon after by Julie and Jeff (also from the Great Northwest and pictured below), Claudia from San Fran, and Amy from Asheville. It was a convention of frequent-flying angels, accompanied by my sister Dina, the Chief Angel, her husband Bob and son Sam.

Why does it take so long for some of us to appreciate how important our loved ones are?