Simon C.'s Update Blog

Pneumonia?

2009-04-08T13:54:00.005-04:00

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!

Getaway

2009-04-03T18:40:00.010-04:00

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.

A cow's revenge?

2009-03-28T00:30:00.005-04:00

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

Update on my treatment

2009-03-27T20:59:00.005-04:00

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....

2009-03-27T20:46:00.011-04:00

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.

More good news on soy

2009-03-25T12:10:00.004-04:00

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

Another milestone

2009-03-22T18:32:00.012-04:00

(Photography by Michael Cantor Photography/www.mjcantor.com)

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.

A happy tummy

2009-03-17T20:23:00.012-04:00

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!

More good signs!

2009-03-14T09:28:00.011-04:00

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!

Hopeful signs

2009-03-12T17:41:00.005-04:00

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!

The stomach bug from hell

2009-03-11T14:49:00.006-04:00

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!

I have a piece on HuffPost today

2009-03-04T17:51:00.009-05:00

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

2009-03-04T12:45:00.004-05:00

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 http://www.HumaneSeal.org.

Our canaries

2009-03-03T04:12:00.002-05:00

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.

More on breast cancer

2009-02-26T19:36:00.002-05:00

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

2009-02-26T11:08:00.002-05:00

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.

And the envelope, please...

2009-02-22T19:26:00.008-05:00

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...

Why Avon is the best

2009-02-16T00:36:00.016-05:00

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 www.HumaneSeal.org.)

Not the greatest of news

2009-02-15T18:47:00.002-05:00

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!

No news is good news

2009-02-09T19:33:00.014-05:00

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 :)

Inspiring -- and funny -- medical story

2009-02-04T21:46:00.005-05:00

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.

Hospital food, chemo update

2009-02-03T00:18:00.005-05:00

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!

If only hot dogs came with warning labels...

2009-01-30T08:32:00.014-05:00

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

A dose of Vitamin O

2009-01-29T17:29:00.017-05:00

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...

Feeling good this week

2009-01-19T23:29:00.016-05:00

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!

2009-01-19T20:32:00.019-05:00

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.

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

2009-01-18T10:16:00.015-05:00

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.

Channeling the Big Lebowski

2009-01-14T00:09:00.003-05:00

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.

Juicier juice

2009-01-13T23:42:00.016-05:00

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.

Old friends

2009-01-08T19:37:00.010-05:00

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.

Not much news today!

2009-01-06T18:42:00.008-05:00

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.

My letter in the Baltimore Sun today

2008-12-31T05:34:00.008-05:00

I have a letter to the editor in the Baltimore Sun today about hospital food. (One of my favorite subjects to crab about!) Seriously, if you've spent time in a hospital bed, you probably know what I'm talking about. I always think it's funny when I see the insurance bills for my hospital stays noting the enormous amounts they charge just for "room and board." Maybe I next time I should ask for a discount on the "board" since my family almost always brings me yummy vegetarian meals from home or a restaurant.

Change of plans

2008-12-29T14:42:00.007-05:00

I saw my doc today and he thinks we should stick with the same chemo -- at least for now. I was leaning in the same direction so I'm glad we agreed. Still hard to tell how much the Vidaza is working but he thinks it's worth trying another couple of cycles. Next Monday, I'll begin round 6. Still hoping for a knockout :)

Holiday lights

2008-12-28T21:02:00.012-05:00

It took almost an hour to get into this place -- Brookside Gardens in Wheaton, Maryland -- but it was worth it. Hard to capture without a tripod, but the thousands of lights manipulated into fanciful creatures, flowers, and various other designs were amazingly beautiful. Plus, this is a light show you can walk through, not just drive. I'm glad I was able to go--the fevers seem to hit at least once a day which makes it hard to get out.

Happy Solstice, Chanukah, and Christmas!

2008-12-25T21:16:00.003-05:00

I hope everyone is having a great holiday. My sister and her family are here and we're celebrating as many holidays as possible. Here's my nephew Sam lighting the Chanukah menorah tonight.

Another Seattle angel flew in for a visit

2008-12-17T23:09:00.009-05:00

If you've been reading this blog since the beginning, you know I call my out-of-town visitors angels. (I had a whole house full of Seattle angels here this August and a few others from North Carolina and San Francisco.) Well, another Seattle angel -- my dear friend Ellen Leach -- visited this week. Ellen deserves an award for keeping me company at the clinic longer than just about anyone other than my sister or husband. She also quickly learned to navigate the scary traffic circles near the clinic. Thank you, Ellen!

And here's a new picture of my sweet boy, Fatty (or as some of my friends prefer to call him, Slim.) As you can see, he's having a relaxing holiday season.

My letter in the WA Post today

2008-12-17T11:59:00.011-05:00

I had a letter in the WA Post today talking about why I'm opposed to animal research, even though I take so many animal-tested drugs and have undergone so many animal-tested procedures. Here's a link to it. Mine is the second letter on the page.

If you read the letter, you may notice that I've just signed up for hospice. Before you freak out, let me explain. Hospice is not like it used to be. Nowadays--at least with my insurance--one can pursue treatment while on hospice. One can be on hospice for a long time, or get on and off it. In fact, there are quite a few benefits for me to get set up on hospice, including in-house nurse visits, a 24-hour nurse help line, free drug delivery, and various other benefits to make my life easier.

I know that hospice is a loaded term and it might sound to some of you like I've given up, but I haven't! Trust me. I'm still hoping that the chemo will work.

More good news about fruits/veggies & breast cancer

2008-12-16T15:04:00.002-05:00

See the newest study.

Out of town, sort of

2008-12-14T14:18:00.003-05:00

I finally got out of the house--and went somewhere other than the clinic. After a week of chemo infusions and blood transfusions, I thought I deserved a yummy vegan brunch. John drove me up to Great Sage in Clarksville, MD, a no-man's land between Baltimore and D.C. It's the best vegetarian restaurant in this area. I had the Three Onion, Three Mushroom Tofu Quiche with roasted potatoes and soy sausage. Yum. I should have taken a pic!

Patients aren't always so patient

2008-12-09T18:04:00.007-05:00

If you've ever spent hours impatiently waiting for a medical appt., you know how funny the word "patient" really is.

The clinic was more jammed than usual today since the docs were all away last week at a big hematology conference. (Unfortunately, there were no fabulous new cures for leukemia unveiled at the conference.)

I did finally talk with my doctor and he wants to switch me to Dacogen if the round of Vidaza I'm doing this week doesn't make more of a difference. That round would come just after New Year's. Meanwhile, I keep hoping the Vidaza will kick into high gear.

Night lights

2008-12-05T22:09:00.009-05:00

After putting in a full day at the clinic getting transfused, it was lovely to spend a couple of hours checking out the national Christmas tree--and to have the energy to do so!

Kidding around

2008-12-04T11:13:00.023-05:00

John and I had a great Thanksgiving with my sister Dina and her son Sam. On the last day of their visit, we went ice-skating at the Sculpture Garden on the National Mall. I even did one lap around the rink. (Fortunately, there are no pics of that athletic attempt!)

Regarding my health: Still not sure if the Vidaza is working. Seems to help with my neutrophils and platelets, but my bone marrow is just unable to produce any red cells. Unfortunately, I'm needing more frequent transfusions. Thank god for the distraction of great novels :)

Must-see movie: Young@Heart

2008-11-29T23:39:00.014-05:00

If you're in the market for some inspiration (especially if you're challenged by age or illness), check out the amazing documentary Young@Heart. It's about a senior cover band that tours the world performing the Rolling Stones, the Talking Heads, and all kinds of other music you don't normally associate with people over 75. They're awesome! (You can rent the film from Netflix or purchase some of their past shows at www.youngatheartchorus.com.)

Neutrophil delight

2008-11-26T18:41:00.007-05:00

Unless you're a lab tech or hematologist, or have a blood disorder, chances are you don't know how many neutrophils you have. (Those are the white blood cells that miraculously fight infection.) As someone who's often dangerously short of them (it's called being "neutropenic"), I decide whether or not to go to the movies, wear a mask to the grocery store, or get my teeth cleaned depending on how many of these little guys are in my blood on any given day.

Today, I was thrilled to find out that my neutrophils have almost doubled since last Friday which means that even though I'm still immune-suppressed, I don't have to be quite so worried about going out and about. PLUS, my red blood cells are holding firm which means I can probably make it through the holiday without a transfusion. Happy Tofurky, everyone!

Here's to oncology nurses!

2008-11-21T17:10:00.009-05:00

I just came from the clinic, having had another transfusion which I hope will carry me through the holiday. Today, as always, I was so grateful for the wonderful nurses at Medical Faculty Associates. Like so many oncology nurses who have treated me over the years--both in D.C. and in Seattle--this group is unfailingly competent, kind, compassionate, and hard-working. There may be a multitude of problems in the healthcare system, but oncology nurses aren't one of them. This picture is of Katie. Not shown, but just as appreciated, are Kirstin, Theresa, Paula, and Kathy.

Another reason not to eat meat

2008-11-20T11:15:00.006-05:00

Although there's already abundant evidence that meat production is horrifyingly cruel, Tuesday's New York Times had yet another article about terrible abuses at the slaughterhouse. If you don't stop eating meat for your health or the environment, consider the horrors that are routine in meat production. And even if your Thanksgiving turkey is free-range and organic, do you know how it was treated at the end of its life?

Another challenge for Obama--healthcare crisis

2008-11-18T10:23:00.005-05:00

Excellent editorial in today's NYT about how poorly the U.S. medical system compares to those of other countries. The piece talks about medical errors, test duplication, lack of after-hours care, and how prohibitive costs keep some chronically ill folks from getting care.

Who needs pumpkin pie?

2008-11-17T20:42:00.004-05:00

I've been dealing with a lot of fatigue lately--don't know if it's the chemo or the leukemia. But thanks to a couple of pumpkins on our porch, the squirrels have been keeping me amused.

A bit more of fall

2008-11-13T13:08:00.007-05:00

The rains are hitting D.C. pretty bad right now and I'm afraid we'll lose all our gorgeous gold and red leaves. So here's a pic from a walk John and I took along the Potomac last Sunday. A gorgeous day--possibly our last for a while.

Happy Birthday to the world's best sister!

"Oh, she's got the fever...Fever all through the night..."

2008-11-12T17:48:00.018-05:00

Remember Bruce Springsteen's song The Fever? It's been floating through my head all day. Not a surprise given that my recent Vidaza injections seem to bring on evening fevers. Fortunately, John and I have been through this fever routine so many times that we're getting a better handle on when we can manage it at home. As Leonard Cohen has so beautifully sung, Hallelujah! Staying out of the hospital is Goal Number One.

Here's a good one: Not enough fat!

2008-11-12T12:01:00.005-05:00

Just a quick note to let you all know that I've restarted round 4 of Vidaza. (I'm taking the Vidaza in injection form now rather than as an infusion since my arm is still recovering from the slipped IV last week.) My nurse keeps commenting that I don't have enough stomach fat to protect me from the needle sticks. I find that amusing and gratifying at the same time. Although I know I'm skinny because of my disease, I can't help but enjoy it on a certain level. American women all grow up desperate to be thin. Too bad I couldn't get here another way!

My successful escape

2008-11-08T19:48:00.014-05:00

It took my sister's lawyerly diplomacy and the kindness of a third-year medical student to bust me out of the hospital last night. The different teams taking care of me didn't agree on a treatment plan and a mix-up in orders to the radiology department resulted in my staying an unnecessary extra night. (No wonder healthcare costs are out of control.) While I've had some excellent hospital care over the years for which I am eternally grateful, I've also seen some serious flaws with the system. It's frighteningly clear that one needs to double-check things whenever possible.

How I spent election night

2008-11-05T21:38:00.006-05:00

Just so you don't get the idea that I spend all my time hiking, kayaking, and eating out, I'm blogging tonight from George Washington University Hospital.

I checked in yesterday afternoon with a fever following a mishap with my chemo treatment on Monday. Fortunately, I think I'm OK again and should be able to go home Thursday or Friday.

The good news is that I got to vote--thanks to something called an emergency absentee ballot. And although we missed a lot of the election celebration, we could hear folks cheering in the streets outside our room.

More on breast cancer

2008-11-03T12:35:00.011-05:00

Not that we really need any more evidence, but here's more confirmation that keeping one's weight down and exercising can help fight breast cancer. There's a new study on weight and another on exercise.

(Of course, if you know me, you probably already know that a vegetarian or vegan diet can help with the weight!)

Seattle days

2008-10-31T00:18:00.010-04:00

I had a great visit with my favorite Fred Hutch doctor yesterday. He validated the treatment course my D.C. doctor and I had settled on a couple of months ago and gave me some additional helpful information in case the drug I'm currently taking doesn't work. I'm really happy I met with him.

He also recommended a transfusion so I'll spend this morning in the Seattle Cancer Care Alliance infusion room--another procedure for old time's sake. (Halloween, a perfect time for a transfusion!)

Fortunately, the extreme fatigue (caused by a low hematocrit) didn't begin on Wednesday until after I was able to enjoy a fabulous hike with two friends, Julie Friedman and her beau Jeff Stone (two of those Seattle angels who visited me in D.C. this summer). We spent the day in one of my favorite hiking spots, Umtanum Canyon near Yakima in Eastern Washington.

This area is famous for its big-horned sheep which we were very lucky to spot. The gorgeous yellow cottonwood leaves were flitting in the breeze and we saw plenty of evidence of beavers. Unfortunately, we ran into two Cheney-look-a-like hunters--with dogs and rifles--right on this well-trodden trail!

One more walk on the itinerary, several more visits with friends (and hopefully, a few more gourmet vegan dinners!) and then home to D.C. on Sunday.

Having a great time...wish you were here

2008-10-26T00:16:00.009-04:00

Traveling to Seattle with my low white cell count was scary but I made it in one piece. So far, I've had two great hikes and two yummy vegan dinners. (Seattle is famous for both.)

Here's a pic of three of my Seattle angels (l. to r., Jennifer, Rita, and Laurel) overlooking Deception Pass about an hour and a half north of Seattle. We saw seals, quail and cormorants, mountaintops, tons of sun, and miles of views.

On a side note: Seattle continues to grow, the traffic is atrocious -- and sadly, seven killer whales are presumed dead this week from lack of salmon. Still, the area is beautiful...

Headed to Seattle

2008-10-22T20:59:00.004-04:00

I've been trying to get to Seattle to visit friends and consult with a doctor at Fred Hutch for the past few weeks. It looks like I'll actually be leaving in the morning!

This day cancels out the bad ones

2008-10-19T19:15:00.002-04:00

During my bad weeks, I begin to wonder if fighting so hard against the cancer is worth it, but a day like today overrides all that negativity.

John and I had an absolutely gorgeous kayak on the Pocomoke River today in southeastern Maryland. We had the wind at our backs, the tide in our favor, and the eventual cooperation of a reticent sun.

The Pocomoke is more like southern rivers, with bald cypress trees and dark tannin-filled water. We were literally the only people on our section of the river for three hours. Just us and the birds and the gorgeous fall colors. No mosquitos and even more important, no hunters! Drifting downstream in conditions like these--pretty perfect.

Lesson #587: I had been sick on Friday night and afraid my hemoglobin was getting too low, but we took the chance and drove out to the Eastern Shore anyway. As some folks in D.C. say, "have a blessed day." And we did.

P.S. Here's a picture of the Pocomoke Canoe Company in Snow Hill, a fabulous canoe/kayak outfitter that portaged us back up the river. Snow Hill has a bit of a charm, as well as a neat little restaurant -- the Palette -- with some vegetarian options.

Quick update

2008-10-14T23:09:00.000-04:00

The third round of Vidaza went OK. I always feel under the weather after a week of treatments, but am starting to feel "normal" again.

I was supposed to go to Seattle this week to visit friends and see a doc at Fred Hutch, the clinic where I had my transplant, but have had to postpone the trip for a week because my white count is really low and it's too risky to travel. (For those blissfully unaware of the importance of white blood cells, they protect us against infection.)

Meanwhile, the weather in D.C. is absolutely glorious.

Past the "hump day" of the third round

2008-10-09T10:47:00.002-04:00

I know some of you wonder how my third round of Vidaza is going. Like the earlier two rounds, it's hardly fun but definitely a snap compared to heavier chemo that I've had. I've even been able to walk to some of the treatments. (Good exercise and much cheaper than parking tickets!)

At any rate, we will not know until after the fourth round--when I have another bone marrow biopsy--whether this drug is working.

One more shout out for the wonderful folks who donate blood. I had another transfusion on Tuesday and am so grateful for their generosity.

If you would like to help the cause in some way, please think about giving blood. In fact, Halloween is the perfect time!

Here's a fun holiday-inspired blood drive in Seattle. Other cities may have similar events but even if they're not, there are blood donation centers set up all around the country. Forgive my warped sense of humor, but all this focus on blood makes me think of vampires! (Sorry--the link in the graphic doesn't work.)

Kayaking nirvana

2008-10-05T19:08:00.000-04:00

I'm scheduled to begin another round of Vidaza on Monday so I wanted to have as much fun as possible this weekend. Fortunately, the gods cooperated with some drop-dead gorgeous weather.

So on Saturday, John and I drove out to a state park in Eastern Maryland and went up Tuckahoe Creek. It was one of the most beautiful kayak trips we've ever taken.

A meandering creek, calm (and deep enough) water, tons of turtles, some amazing beaver dams, an absence of bugs, and not too many humans.

The trip would have been perfect if the hunters weren't shooting it up in the nearby woods. (Speaking of hunters ruining things, there's now a pink Palin-inspired bow for sale. God help us...) More kayaking pics here.

Must-read...on being a "bad patient"

2008-10-02T18:43:00.000-04:00

Do you remember Charlotte York's amazingly sweet husband from Sex and the City, Harry Goldenblatt? Well, the actor who played Harry--Evan Handler--is also amazing for another reason. He had a successful bone marrow transplant for leukemia in the 80's and speaks out about the benefits of being pushy, aggressive, and relentlessly involved in every aspect of your care.

I can't wait to read his books and stop feeling guilty about double-checking everything. He says he knows he's saved his own life several times and given what I've through, I believe it! Read about him in this fabulous CNN interview about being a "bad patient."

Seeing pink over breast cancer

2008-10-01T21:24:00.000-04:00

It's that especially ironic time of the year--Breast Cancer Awareness Month--when you can help fight breast cancer by buying wine, steak dinners, and other pink-labeled products that may actually increase your risk of breast cancer. (In case you spend more time reading AdBusters than newspaper ads, it's the month when many businesses will donate a portion of these sales to breast cancer research.)

While I love the idea of a month devoted to raising awareness about a disease that has made my life so difficult, I don't like the fact that many companies seem to be using it to "pinkwash" themselves. And I hate the fact that so many of the funds are going to animal research rather than to prevention (for example, advocating for vegetarian diets, exercise, and a pollution-free world). Perhaps that's not surprising given that the month was invented by the drug industry...

If you want to donate money to help fight breast cancer, skip the pink M & Ms and choose one of the cruelty-free charities that carry the Humane Charity Seal of Approval; Avon is one of them.

Living in the present

2008-09-29T16:37:00.000-04:00

I guess the universe is trying to teach me a lesson--how to live in the present.

My sister was in town this weekend and I actually ended up in the ER on Saturday morning with chest pains. (I have a real talent for entertaining out-of-town guests!) Fortunately, they couldn't find anything wrong with my heart but the six-hour detour put a damper on the already-wet weekend.

And then today, I went in to the clinic to begin another round of Vidaza only to be told by my doctor that he wanted to hold off for another week. (My platelets are down.) So, that means that plans I've made for next week have to be changed and that all of a sudden, I'm free this week. Makes it a bit tough to plan ahead...

What I'm getting at is this: If you've made plans with me to do something, please forgive me if I have to reschedule! On the other hand, if you're free right now, this very minute--5:01 pm Eastern--I'm in great shape :)

TrueBlood: Time for a Refill

2008-09-23T21:27:00.000-04:00

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

2008-09-22T15:15:00.000-04:00

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

2008-09-19T15:44:00.000-04:00

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

2008-09-14T16:25:00.000-04:00

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

2008-09-13T22:18:00.000-04:00

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

2008-09-08T11:12:00.000-04:00

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

2008-09-06T12:11:00.000-04:00

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!

2008-09-02T15:30:00.002-04:00

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

2008-08-29T22:15:00.000-04:00

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

2008-08-28T13:41:00.000-04:00

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

2008-08-28T06:21:00.000-04:00

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

2008-08-25T23:56:00.000-04:00

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

2008-08-23T23:38:00.000-04:00

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

2008-08-20T16:17:00.000-04:00

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

2008-08-17T16:01:00.000-04:00

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

2008-08-17T12:15:00.000-04:00

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

2008-08-16T10:27:00.000-04:00

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

2008-08-14T05:29:00.000-04:00

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.

2008-08-12T23:33:00.000-04:00

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

2008-08-11T02:25:00.001-04:00

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

2008-08-09T15:44:00.000-04:00

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

2008-08-07T16:32:00.000-04:00

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?