My letter in the Baltimore Sun today

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

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

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!

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

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

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

See the newest study.

Out of town, sort of

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

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

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

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

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

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!

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

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

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?

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

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..."

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!

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

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

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

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

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

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

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

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

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

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

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"

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

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

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

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.

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?