Sunday, October 19, 2008

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.

Tuesday, October 14, 2008

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.

Thursday, October 9, 2008

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.)

Sunday, October 5, 2008

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.

Thursday, October 2, 2008

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."

Wednesday, October 1, 2008

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.

Monday, September 29, 2008

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 :)

Tuesday, September 23, 2008

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.

Monday, September 22, 2008

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)...

Friday, September 19, 2008

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.

Sunday, September 14, 2008

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.

Saturday, September 13, 2008

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.

Monday, September 8, 2008

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.

Saturday, September 6, 2008

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.

Tuesday, September 2, 2008

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."

Friday, August 29, 2008

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!

Thursday, August 28, 2008

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!

Monday, August 25, 2008

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!

Saturday, August 23, 2008

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.)