TrueBlood: Time for a Refill

After five days of barely moving, I finally got a refill today (aka, a transfusion) and am feeling like a somewhat-normal person again. I wish there was some way to thank the person who donated the two pints of blood I got today. I wouldn't be here without people like you.

To celebrate, I talked John into leaving work a few hours early and we did part of the Billy Goat Trail. Needless to say, I could hardly have made it out of the parking lot yesterday.



As usual, we saw deer, herons, and turkey vultures. I am continually amazed at how much wildlife there is so close to D.C. What was really special today (not to mention the thrill of just being able to walk along the river) was seeing a kingfisher, hearing an owl, and feeling a bit of fall in the air. Here are some pics from our walk.

More evidence that less treatment is better

The New York Times describes a new study today that some women with early breast cancer may be able to get away with less radiation that previously recommended.

Unfortunately--as one of quoted experts admits--many doctors will be slow to institute the changes so women will have be assertive about asking for this new protocol. Just more evidence that you really need to do your homework before starting cancer treatment (as if any of us who have been through treatment didn't know this already)...

Laying low

Nothing exciting to report. I haven't done much this week because my hemoglobin is very low which means I am short on red blood cells and energy. (Even Fatty, our 17-year-old cat, is more active than I am today!) My doctor decided to give me Aranesp, a very expensive red-blood cell booster, on Monday (rather than another transfusion) so I'm hoping it will kick in soon.

If you're wondering what this funny picture is of and what it has to do with my health: It's of a bus at the Museum of Visionary Art in Baltimore that's covered from front to back with trinkets, colored glass, and toys. It has nothing to do with my health. It just makes me smile.

More on meat and breast cancer

More evidence from Dana Farber that what a woman eats as an adolescent may impact her risk of breast cancer. Folks, think about raising your kids vegetarian! Even if you don't do it for the animals' sake--or the environment--you could save your kids from a life of chemo and radiation.

In memory of...how you can help

Just a brief note late on a Saturday night. Sadly, two other folks I've corresponded with on my cancer listserves have passed away. One was a young reporter in England, Adrian Sudbury, who campaigned tirelessly for bone marrow donation. It's made me realize that I could do more to help others in my shoes. And if you're wondering how you might help, here are three suggestions:

* Register as a bone marrow donor.

* Donate your newborn's cord blood. (Cord blood transplants are an alternative when no matching bone marrow donor can be found.)

* Donate blood.

If you can do any of the above, thank you so much! As someone who benefited for two years from a cord blood donation and who currently is transfusion-dependent, I can vouch for how life-saving these donations can be.

P.S. My second round of treatment (this past week) went fine. If there's one thing that heavy-duty chemo does for you, it's make you appreciate the lighter stuff, the kind I'm taking now...

P.S.S. The photo is of lotus flowers at the Kennilworth Aquatic Gardens in D.C.

Failures of animal research

Newsweek's Sharon Begley is one of the few mainstream journalists I've read who ever addresses the limitations of animal experiments. In her new article on the failures of cancer research, she includes a bit on the drawbacks of using animal "models." She also talks a bit about the reasons we focus on cures rather than prevention. (Drug companies can't make any money on broccoli sprouts.) I wish she had written more about the cancer-preventing benefits of meatless diets (and exercise), but the article is excellent and worth a read.

Weekend update

Just a quick update to say that I'm still feeling well, hiking the river, and getting ready for Round 2 of Vidaza--which starts on Monday.

Meanwhile, one of the neatest people--of the many neat people--I've met in my transplant journey just passed away. Debbi Hoegler was a major force on a listserve I'm on for anyone contemplating or dealing with a bone marrow transplant (BMT-Talk at www.acor.org). She was incredibly funny, irreverent, inspirational, and witty. She always offered us the best advice--including silly but oh-so-wise tips like bring a rubber chicken to hang on your IV pole at the hospital or a Nerf Blaster Gun for nurses who barge in at 4 am to take your vitals. Two of her favorite sayings were:

Blessed are the cracked for it is they who let in the light.

and

If you're not living on the edge...you're taking up too much space.

Everyone on the list misses her terribly.

Here's to Debbi and the other wonderful people I've known who have fought so graciously against cancer.

Good news!

Just got home from the clinic. I'm happy to say that the Vidaza seems to be working already! My neutrophils and platelets are back to normal and my red blood count only went down a bit since last week even though I haven't had a transfusion for almost two weeks. Of course, no one knows if the drug will continue working or for how long, but so far, so good. As my good friend Amy Joy Lanou always says, "Happy Day."

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.