Friday, January 30, 2009

POP goes the bottle

What's my favorite new Pasadena pair?

Find out at Open Mouth, Insert Fork.

Wednesday, January 28, 2009

My name is Susan and I'm a Yahoo! Group junkie

Good news: I went in for my monthly visit at the City of Hope on Monday and my Eosinophils (EOS) are still behaving. I mentioned to Dr. Forman that I'm a member of a Yahoo! Group for individuals with EOS issues. The group concensus is that it could take as long as six months after tapering off high-dose steroids for the EOS levels to go haywire again.

He agreed and took out his pen and signed me up for monthly visits for the next six months. Most patients who are one-year post transplant get to space their visits three or six months apart, but this EOS business is keeping me on a short lease.

Dr. Forman was curious about how I found an EOS group and I told him there was a little thing called the World Wide Web that made it easy for patients to find their peers. The rarer the disease, the more desperate patients are to make connections. Most of the members of the EOS group have been diagnosed with HES (Hyper Eosinophilic Syndrome). Almost everyone has a horror story of becoming deathly ill (much as I was last summer) before doctors reached a diagnosis. I was actually pretty lucky to be under the care of a hematologist at the time.

As I've mentioned before, my preoccupation with the EOS has taken my mind off the possibility of a cancer relapse. Even Dr. Forman said, "I almost forgot the reason you first came here," as he checked my neck for swollen lymph nodes. And my email messages from my Mantle Cell Lymphoma (MCL) group go mostly unread these days.

It's also taken my mind off my cutis laxa (lax skin) disorder that, I'm ashamed to admit, was a bigger blow to me than finding out I had cancer. Mantle Cell Lymphoma is treatable; cutis laxa is not. I had fears of looking like a shriveled prune before my 55th birthday, alive but repulsive. In the last month, two other patients, a man and woman, have emailed me after finding my blog post on cutis laxa. Both were extremely relieved to find someone else with the same rare condition and are eager to share stories, feelings and recommendations for plastic surgeons.

I plan to talk by phone tomorrow with the woman with sagging skin. I may even suggest that we start a Yahoo! Group.

Thursday, January 22, 2009

Monday, January 19, 2009

O-Spam-a Musubi

Let the celebration begin.

I'll be partying with friends at an inauguration breakfast tomorrow. In honor of our new Hawaii-born Commander in Chief, I prepared spam musubi, or O-Spam-a Musubi as I like to call them.

Find out three other things I have in common with Obama at Open Mouth, Insert Fork.

Zippity Doo Dah to Mutts for Marrow

I don't have time to post my Doo Dah photos today, so I'll share the work of several other local bloggers.

Nancy's Update: When Nancy heard about the Mutts for Marrow, she jumped in with all four paws, recruiting mutts and designing tiaras. I have Nancy to thank (and blame) for getting me involved with A3M.

West Coast Grrlie Blather: Kelly, another fan of cause-related fun, marched with Thorny Rose Ann Lau and the Great Firewall of China Marching Brigade.

KCH Blog: Kathy got some great shots, including one of the Mutts for Marrow.

Friday, January 16, 2009

I love a parade!

Doesn't get much better - having a blast while spreading the word about the need for "mutts" and minorities to register for the National Bone Marrow Registry. Also got to plug A3M and Krissy Kobata. Nancy made my tiara decorated with dog bones. That handsome hapa standing next to me is Scott Fleeman, a high school student who recruited several mutts to join us on Sunday.

Scott and I are upstaged by Betty, our spokes-mutt for Mutts for Marrow.

This is how mutts get down to disco music.

Disco lives again after dying an early death from polyester poisoning in the early 80s. Look for this disco troop at the parade on Sunday.

See more photos on Flickr.

Thursday, January 15, 2009

Mutts on the Move - KTLA Channel 5 on Friday Morning

Tune it to KTLA, channel 5, tomorrow morning for pre-Doo Dah Parade coverage in Pasadena. Reporter Gayle Anderson will interview 14-year-old hapa Scott Fleeman and me about our entry, Mutts for Marrow. When I spoke with Gail this morning, she said, "This sounds twisted. I love it."

Of course, Queen Skittles and Grand Marshall Charles Phoenix will be there too.

Krissy, Queen of the Mutts, isn't available tomorrow, but she'll be leading us at the parade on Sunday wearing her dog biscuit tiara.

Come out and catch a dog bone biscuit on Sunday. Steve's Pets in Altadena generously donated a few hundred doggie treats for the event.

If you're a mutt or a minority and you'd like to march with us, it's not too late. Just show up at Memorial Park at 10:30 on Sunday with the $10 fee. We'll provide the bones.

Wednesday, January 14, 2009

Be the Change in 2009!

If you resolved to get lean, get fit, get organized or get out of town in 2009, you're not alone. Most resolutions focus on how we can improve our own lives.

But one of my proudest parenting moments came when members of Cynthia's fourth grade class at Walden School were asked to make a New Year's resolution. She decided that she wanted to do more to help others. Since she had to quantify her resolution, she set out to volunteer at Union Station two times a month instead of just once.

We could all learn a thing or two.

My friend Lilli has made it a little easier for those of us in the San Gabriel Valley to follow in Cynthia's early footsteps. She has posted an excellent roundup of volunteer and giving opportunities to help our neighbors in need of food and shelter. In these tough economic times, the need has increased, but donations have decreased.

Also check out KCH's recent post, If He Can End up on Skid Row, So Can We.

And if you want to find out how to speak out about state budget cuts adversely effecting the homeless, go here.

While you're in the giving mode, don't forget three other ways you can literally give of yourself:
  • Donate blood or platelets to the American Red Cross. Don't wait for a national or international disaster to give.
  • Donate blood or platelets to City of Hope or your local cancer center. I'll never forget the day when, after my stem cell transplant, I desperately needed platelets, but none were available for two days. Before that day, I had taken for granted that blood and platelets would always be available for me.
Now I'm feeling a little shallow about my 2009 resolution.

Tuesday, January 13, 2009

Getting Crabby

I'm getting closer to creating the ultimate crab cake. Check out my latest attempt at Open Mouth, Insert Fork.

Monday, January 12, 2009

Long, slim, slimy worms are back!

Longtime readers may recall that I was unable to care for the wrigglers in my worm bin while going through chemo. The worms weren't the problem; it was their casings (a gussied up word for worm poop) that could have wreaked havoc with my repressed immune system.

For nearly two years, my friends Donny and Janet have been temporary foster parents, coddling and spoiling them as though they were their own.

On Saturday, the worms returned home.

I had their favorite food, pineapple, waiting for them. (Lucky for the gang, pineapple was on the menu for brunch at a friend's house on Friday. I asked for a "worm bag.")

If you've ever left a comment on this blog, you have a worm named in your honor. Among the brood are a set of triplets (Barbara 1, 2 and 3) and a set of quadruplets (Karen 1, 2 and 3 and Karin). It's hard to tell them apart, but Karin usually keeps the other worms in stitches.

It's good to have you home again, my long, slim, slimy friends.

Saturday, January 10, 2009

Crafty Bits

A few weeks ago when I was a sick puppy, I wrote "Bits and Pieces" in the title line and managed to scare a few people. This time, I thought I'd borrow Paula's phrase, "crafty bits." She throws random bits of ribbons and fabric and puppy dog tails into a bag and puts a "crafty bits" post on Freecycle. Within minutes, freecyclers are fighting over the bag.

Here are a few of my own ribbons and fabrics and puppy dog tails (or is it tales):

Another Orange Cat: We already own two orange cats, a grey Norwegian Forest cat and two dogs, but I thought it was time to introduce a fourth cat. My business partner, Troy Corley, and I are now the proud owners of, a website and twice a month publication for families in the San Gabriely Valley. We purchased the site from my friend Karen E. Klein and her business partner.

No More Mini Me: My two-pecan-sticky-buns breakfast days are over. Since I tapered off the Prednisone, I'm back to a "normal" metabolism. I now manage to gain weight with a steady holiday diet of heavy cream, butter and sugar.

No More Lazy Susan Carrier:
In August, I wrote about how my number one position on a Google image search had been usurped by a piece of kitchen equipment. It's a real ego bruiser to be upstaged by something that swivels around on a table. I'm back in the number one spot, but that lazy susan is always on my heels.

Doo Dah, Doo Dah: Come out and watch the "Mutts for Marrow" on Sunday, January 18, 11:30 am, at the Pasadena Doo Dah Parade. You may even catch a Milk Bone dog biscuit.

Goddess of the Dawn: We're still watching closely for the whacky eosinophils, that component of the white blood cells I learned about last May. The plus side is that I know the answer to "Goddess of the Dawn" in crossword puzzles - Eos.

It's in the Bag

Find out how I became a bag lady at Open Mouth, Insert Fork.

Wednesday, January 7, 2009

Mutts for Marrow to March in Doo Dah Parade

Are you a mutt (ala Obama) or a minority?

Do you own a four-legged mutt?

Do you live in Southern California?

Join me and other mutts on Sunday, January 18, at the Pasadena Doo Dah Parade, the hip alternative to the city's annual Rose Parade. Our theme is "Mutts for Marrow." We'll raise awareness of the need for minority bone marrow donors as we walk the six-block parade route with our mutts. We'll also be throwing out Milk Bones, Live Savers and information about becoming a donor.

Krissy Kobata, a young hapa in search of her bone marrow match, will be joining us. She's pretty enough to be a Rose Queen and quirky enough to be a Doo Dah Queen.

If you or your dog would like to join the march, please let me know by Monday, January 12. ( There's a modest $10/person charge for participating in the parade. Dogs walk free. And, of course, there's no charge to come and watch and cheer us on.

Monday, January 5, 2009

The Conservative Gardener

I'll bet you didn't know that most gardeners are conservative. At least that's the absurd conclusion drawn by a commenter on my garden grieving article.

Read more about this on a post I did for the YWCA's blog, What's the Difference.

Saturday, January 3, 2009

My Boots and My Bike!!!

Susan really hasn't changed much in physical appearance. What do you think?

Friday, January 2, 2009

Good Grief - Leaving a garden can be painful

Two child-sized Adirondack chairs rest among the golden leaves.

Tell the truth.

Have you ever "haunted" a former house or garden? Do you drive by to check out the height of the sycamore tree you planted? Do you wonder if the new owners are feeding the azaleas?

Read about how some have coped with "gardening grief" in my latest story in the Home & Garden section of the LA Times.

Letting go and moving on, whether it's associated with a garden or an illness, are never easy.

Even in winter the garden is full of life: lemons ready for squeezing, flowering maple in full bloom, an old chandelier converted to a garden fixture and miniature strawberries scattered across the path.

A moss-covered Buddha presides over the shade garden.

I know that one day - in a year perhaps - we'll sell this house. I'm already grieving over the garden.

Thursday, January 1, 2009

What's in store for 2009?

In 2009, I plan to live simply while consuming more champagne, sparkling wine, prosecco and cava.

I am also determined to find the ultimate crab cake recipe. (Read more about it at Open Mouth, Insert Fork.)

And, of course, I'm still on the hunt for that perfect purse.

One More Reason I HEART City of Hope

Amazing research is happening in AIDS as well as cancer.

For example, researchers are exploring if a bone marrow transplant can keep HIV from turning into AIDS.

Click here to watch KABC-TV's story on City of Hope's development of a promising new gene therapy that uses the patient's own blood stem cells.