Wednesday, April 8, 2009


Looks like I may have pneumonia. Fortunately, my hospice nurse is absolutely fabulous and is taking great care of me (in addition to John, of course, my chief cook and bottle-washer). BTW, he disagrees with her diagnosis, and even though he doesn't have a medical degree, he has acquired a certain on-the-job-training and I'm hoping he's right. Am adding a new antibiotic to the one I started a few days ago. So, if I don't call or email you back in the next few days, I'm sleeping a lot!

Friday, April 3, 2009


After a more than a month battling the Stomach Bug from Hell and hardly leaving the house, I had the worse case of cabin fever I've ever experienced. So, this past Monday, John and I took off for three nights at an inn once owned by the Carnegie family on Cumberland Island, a beautiful and undeveloped barrier island in southern Georgia.

Traveling is getting more and more challenging for me but the physical difficulties were definitely worth it. We had three wonderful days of walking and biking through live-oak forests, wildlife viewing, and relaxing on a the inn's giant porch. Cumberland is home to a lot of lucky animals, including wild horses, white deer, and turkeys who roam the ruins of old mansions. Our favorite by far was the prehistoric-looking armadillo. (Click here to see more pics.)

Now it's time to get back to work, researching alternatives to the Dacogen I'm currently taking. I wouldn't get my doctor's final opinion on the Dacogen for another few weeks, but my white count has gone up since the last round so I'm worried.

My Huffington Post piece continues to bring in suggestions for alternative treatments from people around the world, including a new email from Israel about a Chinese anti-cancer medicine. I haven't had any luck with Chinese medications before, but I'm ready to try something new.

Hope you are all enjoying spring.

Saturday, March 28, 2009

A cow's revenge?

If you're looking for more inspiration to stop eating meat, here's the latest report on why it's so bad for us.

Friday, March 27, 2009

Update on my treatment

Just wanted to let you know that I finished my third round of Dacogen (straight up, no anti-nausea chaser) today. My doc says we should know by the end of the next cycle if it's working. That will happen in mid-April.

Since Dacogen is my last best option from the Western medicine world, I've decided to pursue some other avenues--just in case. I will be reading the Moss Report on AML over the next few weeks. Moss reviews all treatments for cancer, including alternative methods which are apparently a lot more commonly used in Europe. I hope to schedule a phone consult with him once I get through the report...

Lots of kind folks from around the country responded to my Huffington Post op-ed with various treatment suggestions. I'm going to look those over as well.

Signing off until next weekend. John and I are off for a mini-trip!

So they can avoid cancer....

Since eating habits begin in childhood--and eating habits are such an important risk factor in developing cancer, please consider signing an important new petition asking the government to provide healthier foods in the schools. The petition also calls on Congress to make sure that all kids at least have the option of a vegetarian option each day. This is an issue I worked on for years at PCRM and care a lot about. In many schools, kids have to choose between chicken nuggets and foot-long hotdogs. Please forward to all your friends and get your kids to sign as well!

If you're really into this topic and live in the DC area, check out this neat conference on childhood obesity my former employer is putting on this June.

Wednesday, March 25, 2009

More good news on soy

Check out the latest study showing soy consumption in young girls may help prevent breast cancer.

Sunday, March 22, 2009

Another milestone

(Photography by Michael Cantor Photography/

Today is my 22nd wedding anniversary and given that it's the 22nd of March, the day seems especially auspicious. John deserves an award for putting up with me for this long, especially the past six years! I often think that partners, siblings, and family of critically or chronically ill people have an even harder time than their loved ones.

At any rate, we had a great day. Not only was it sunny and 65 but we had a yummy lunch at Great Sage, our favorite vegetarian restaurant in these parts, and then a fun afternoon poking around the very funky (in a cool way) Hampden neighborhood in Baltimore. I think that pink flamingos were born here.

Tuesday, March 17, 2009

A happy tummy

Three wonderful things are happening for me this week. One, my dear friend Bonnie is visiting from Seattle and we've been having a lot of fun together. Two, she's been cooking me up some of the greatest vegan meals in the world.

Tonight we had a quinoa salad with capers, olives, apples, celery, carrots and tumeric-coated tofu, along with a pureed carrot ginger soup. Yum. Here's a pic of the soup. And three (drum roll, please): the Stomach Bug from Hell went back to Hell! I can finally chuck the bag of Depends!

Saturday, March 14, 2009

More good signs!

I must have nine lives as I think this particular Stomach Bug from Hell is not going to do me in. I actually had enough energy to stay up all day yesterday and go out and do several hours of errands. Life is good today! And as you can see, the trees are blooming. Yay!

Turns out that I probably don't have the specific super bug -- C-diff--that my doctor has been treating me for. Not sure what I have but I think my turnaround might be thanks to the probiotic I started taking last weekend. Here's a really useful article on probiotics from Health Magazine. Apparently, they can help with a number of health issues, not just stomach ailments. Thanks to one of my nurses for turning me on to the article!

Thursday, March 12, 2009

Hopeful signs

Just as we're beginning to see some small signs of spring around D.C., I'm finally starting to think I may eventually beat the Battle of the Evil Stomach Bug. I'm not out of this particular woods yet, but at least I had enough energy to go out for a drive today and do some errands--on my own!

Wednesday, March 11, 2009

The stomach bug from hell

A number of folks have asked how I'm doing as I haven't posted for a while. Unfortunately, I'm still trying to get rid of my awful stomach bug so I don't have much news to report. (I certainly don't want to go into the details of this bug--trust me, you don't want to know!) One piece of news is that I have started taking probiotics since the antibiotics haven't worked yet. I'm hoping one of them will start working soon!

Wednesday, March 4, 2009

I have a piece on HuffPost today

Here's the link to a piece I just wrote explaining how I can justify taking animal-tested drugs even though I'm against animal experiments. If you don't already know that I'm on hospice, I hope you wouldn't get upset by reading this article. Hospice has changed over the years and thanks to my wonderful health insurance, I can pursue treatment while I'm hospice. So, if I'm lucky and my medication starts working--which I certainly hope will happen--I can always get off hospice. Just wanted you all to know that!

Major investigation on animal research tonight

If you read my blog, you know I oppose supporting animal research. Tonight, Nightline will expose the horrors of a primate lab in Louisiana. (Here's a write-up.) If you follow this issue, you know this story is not anecdotal. The problem is widespread and the best solution is to support non-animal tests by only contributing to those medical charities that don't fund animal testing. Avon and Hadwen Trust are two examples. Others can be found at

Tuesday, March 3, 2009

Our canaries

A friend and I were just talking about what an epidemic breast cancer has become. She said something pretty powerful I wanted to share: "Have our breasts become some sort of canary for the toxins in our environment?" Not a cheery thought but with the ever-mounting numbers of (mostly) women with breast cancer, I wonder.

Thursday, February 26, 2009

More on breast cancer

Here's an interesting article on breast cancer from a doctor I used to work with at the Physicians Committee for Responsible Medicine.

Food industry PR

This old ad has nothing to do with my leukemia or what I'm up to right now but I love it as an example of food industry PR.

Sunday, February 22, 2009

And the envelope, please...

Just a quick note to let you know that I've still got this awful stomach bug. It's definitely getting better, but slowly....Fortunately, my sister Dina and nephew Sam were here this weekend to keep me laughing.

In honor of tonight's Academy Awards, I'd like to nominate Dina for The Most Patient Patient Advocate Ever. She spent 15 STRAIGHT hours with me from 9 am Friday morning through midnight on Saturday morning while we waited and waited and waited for a transfusion. (Long story.) There have been many worthy contenders for this award, but Dina definitely deserves the Oscar this time around...

Monday, February 16, 2009

Why Avon is the best

It's that time of the year again--when many of us sign up for breast cancer walks or runs or are asked to contribute by friends and family. If you're planning on getting involved in one of these popular fundraising events, I'd like to recommend the ones put on by Avon.

The events start in Houston this April and are held in many major cities including NYC, Chicago, San Fran, LA, Boston, and D.C. The reason I like this organization so well is that it made a commitment in 2001 to not support any medical research that uses animals. Hurrah, Avon seems to "get" it! Here's a link to more info about the Avon Walks. (To find out whether a different breast cancer charity is cruelty-free, check out

Sunday, February 15, 2009

Not the greatest of news

Sorry for not writing for a while but John and I have both been battling some sort of awful stomach bug. It's hit me especially hard. I guess I shouldn't have been bragging about feeling so well last week ;(

I don't think this bug has anything to do with the leukemia. It's just that with my compromised immune system, it takes forever to fight off infections. Keep washing your hands and stay healthy!

Monday, February 9, 2009

No news is good news

Just a quick update to let you know that I am still feeling pretty decent. I completed my first round of the new chemo drug (Dacogen) last Friday. It'll take a couple of weeks to know if it's working any better than the Vidaza I took for six months. But so far, I haven't noticed any nasty new side effects.

If it weren't for my weekly blood transfusions, twice-daily pill extravaganza, and a few pesky bald spots and other annoying health issues, I might even forget I have leukemia :)

Wednesday, February 4, 2009

Inspiring -- and funny -- medical story

Here's a fabulous article on Huffington Post by a woman who donated her kidney to a stranger. It's called My Big Fat Vegan Kidney Donation.

Tuesday, February 3, 2009

Hospital food, chemo update

Some good news and some not-so-great news. First, British hospitals are going to start promoting meat-free meals as a way to reduce carbon emissions. Here's a link to the Guardian story.

On the medical front: My white counts are still way too high so my doctor has switched me to another drug to see if it'll work better. So far, no bad side effects. Hurrah!

Friday, January 30, 2009

If only hot dogs came with warning labels...

Here's a new study showing a link between cured meats and childhood leukemia.

Thursday, January 29, 2009

A dose of Vitamin O

Believe it or not, I just got back from a very fun trip to L.A. I felt so good the past two weeks, I thought we should risk a germ-ridden airplane and try to get away. After a harrowing trip out--when you're immune-suppressed, every cough you hear is magnified times 10--we had three fabulous days. Most importantly, I got plenty of Vitamin O(cean)!

Despite a gloomy forecast, the weather was sunny and 60ish, heaven for those of us still dealing with snow and ice. And our hotel room (I splurged) had a stupendous view of the ocean, not to mention a balcony. We had some great outings to the Getty Villa, Point Dome, Crystal Cove State Park, and the Griffith Observatory, but frankly, the most wonderful thing was just listening to the pounding waves and watching the sunrise from our hotel room. Here's a link to more pics.

On the medical side of things: Today's clinic visit brought mixed news. My neutrophils, reds, and platelets are all pretty damned good (for me), but my doctor is worried about my elevated white blood count. It could be a sign of the leukemia progressing. If it doesn't go back down by Monday, we're going to switch to a new chemo drug when I begin Round 8. I find it hard to believe the leukemia is getting worse as I have felt better the past two weeks than I have since I relapsed in July. The next time I hear bad news, I hope to just close my eyes and hear the waves...

Monday, January 19, 2009

Feeling good this week

As many of you know, I've had a tough time since July. (In fact, I never imagined I would be around to celebrate Bush being booted out of office.) But what's amazing this week--besides getting to experience some of the excitement of the Inauguration--is that I have actually felt pretty damned good much of the time. I'm still living on frequent transfusions, but I'm much less tired and haven't had a high fever in more than a week. It could be the Prednisone--which I've had to increase--but as I know from dealing with this disease, it could be anything. I have no idea if this will last, but we're knocking on every piece of available wood! Here's a photo from Sunday; we did an hour walk along the river.

A great night!

D.C. is unbelievably electric right now and I am SO grateful that I feel good enough to enjoy some of the excitement. Most things are way too crowded for an immune-suppressed germaphobe like me but tonight I got to attend the "Saging of the White House" with comic Kate Clinton. It was fabulous. The idea was to use the old Native American tradition of burning sage incense to spiritually cleanse something. In this case, Clinton, a rabbi, a shaman, and several hundred of us gathered to sage the White House of the evil doings of the past eight years. (Since there was too much security at the White House, the saging was held in Dupont Circle.) I don't have a pic of the saging, but here's a snap of a giant blow-up dummy representing Bush. Folks were having a great time throwing shoes at it!

P.S. For a good photo of the Bush effigy, click here.

Sunday, January 18, 2009

Here's to the animals who keep us going...

Cats and dogs are such wonderful companions, especially to those of us dealing with serious illness. Unfortunately, some transplant patients are told to give up their pets because of the germs.

I was lucky because Fred Hutch said I could keep my kitties as their research showed people heal better with their loved ones around. Some brave transplant patients ignore their doctors' advice--believing that giving up their animals would actually be harmful to their health. Here's an excellent article on the topic in USA Today. A couple of months old, but well worth the read.

Up above is Cinders, a sweet girl who lasted through my transplant, but who succumbed to her own illness and old age--22! (My dear friend Ellen gave her a home while I underwent the transplant.) And here's a pic of Fatty who is still with me, every step of the way. Especially if there are plenty of rest breaks.

Wednesday, January 14, 2009

Channeling the Big Lebowski

Don't tell my physical therapist as she'd be worried about my lymphedema acting up, but we went bowling today! It's amazing how something as ordinary as bowling could be so much fun. (Given how many hours I spent in the clinic last week, even going to the library starts to feel like an adventure.) Here's proof of our crazy outing to the suburbs of Virginia in search of an old-fashioned bowling alley that doesn't have a dress code or obnoxious big screen TVs. I hit a strike on my first turn and although it was downhill from there, we had a swell time.

Tuesday, January 13, 2009

Juicier juice

Fresh juice, anyone? A couple of weeks ago, I bought a fancy juicer as I've read that fresh juice is especially good for people with leukemia or MDS.

If you've contemplated buying a juicer or if you have one, you know there are all different kinds. We got the Omega, one of the extractor kinds as they are supposedly better for people who have a hard time absorbing nutrients. (They separate out the pulp.) John's been making his way through Gary Null's Joy of Juicing. His yummy version of Gary's Cucumber, Lime, and Kiwi Divine includes three cukes, one lime, three kiwis, and a tiny bit of agave nectar. Next on the menu? Trying to get leafy greens to taste as good.

Thursday, January 8, 2009

Old friends

Several old friends I haven't communicated in years have recently gotten in touch. It's ironic because I've been spending a lot of time going through old photos and cards and wondering why I lost touch with these and other folks.

I know it's hard to get to my age without any regrets but my advice is to try and live your life so you stay in touch with those you care about. I know it's meant a lot to me to hear from these people. They didn't know I was sick but somehow the universe connected us up again. (Can an agnostic say that?) To the left is Elaine Bystrom, an old friend with whom I spent many happy days hiking in the Pacific NW many moons ago.

Medical update: One more day on the chemo and then I'll get a breather from the infusions. Can't do away with the transfusions but it'll be nice to reduce my time at the clinic and get a break from the Vidaza.

Tuesday, January 6, 2009

Not much news today!

Round Six of Chemo began on Monday. Things are pretty much the same as with previous treatments--which means I don't really have any news to share. Just continuing to keep my fingers crossed.