Monday, April 28, 2008

Springtime has been berry, berry good to me!

I'm seeing red from an overabundance of ripe, red strawberries.

Read all about it and have a slice of fresh strawberry pie at Open Mouth, Insert Fork.

Sunday, April 27, 2008

Happy Endings, Happy Beginnings

I was sorry to miss the City of Hope's Celebration of Life BMT Reunion on Friday, but got to enjoy the event through local news coverage

Check out the ABC News coverage of Christine meeting her bone-marrow donor from Hong Kong.

Tommy Lasorda, the keyote speaker and one helluva passionate guy, wrote about the event on his blog.

And, of course, the San Gabriel Valley Newspaper Group covered the event.

ONE YEAR AGO TODAY: I had my first blood and platelet transfusion.

SAG is not just a union.

My cutis laxa (aka "loose skin") is slowly spreading. The original spots grow larger while new areas of sagging skin continue to develop. It's not life threatening, but it seems to be growing like an insidious cancer. And that's distressing.

The doctors from the USC Dermatology Grand Rounds recommended an antibiotic, Myoxidine. The hope is that this antibiotic will destroy the culprit in my body that's gobbling up the elastin in my skin. It's not a fountain of youth - we can't restore the elastin that's already lost - but I'm hoping we can slow down the sagging process.

Tuesday, April 22, 2008

Japanese Bagpipes

Piper Robert competes at the 2007 Ligonier Highland Games in Pennsylvania.

Several of my friends have asked about Piper's (aka brother Robert's) conspicuous absence from Cancer Banter. He's been busy at a six-week total immersion Piping College on Prince Edward Island. And (Highland drum roll, please) . . . he's getting married and planning a wedding at Casa Carrier.

I thought I'd coax him into commenting with a post about Japanese-Americans who are involved in the Scottish arts. You'll see that Robert's not the only Hapa in a skirt, er kilt.

ONE YEAR AGO TODAY: I visited the City of Hope "clip joint."

Friday, April 18, 2008

Fit for Life

I discovered another "side benefit" of cancer today.

The Pasadena Wellness Community, whose mission is "to help people affected by cancer enhance their health and well-being," offers an amazing slate of fitness classes, including Tai Chi, Qi Gong, yoga, Pilates and strength training. These are all FREE for cancer patients and survivors.

Today I attended a class in Qi Gong (pronounced "chee kung"), an ancient Chinese discipline of breathing and movement. I was afraid that once my hair grew back, I could kiss those free classes goodbye, but that's not the case. One woman in my class completed treatment for breast cancer 16 years ago, and another was diagnosed a dozen years ago.

The Wellness Community is helping cancer survivors become thrivers for the rest of their lives. And, if they have their way, that will be a very, very long time.

ONE YEAR AGO TODAY: I pole danced at Helford Hospital.

Monday, April 14, 2008

A Visit to Helford Hospital

After my clinic appointment at CoH today, I paid a visit to Helford Hospital to deliver a stack of "gently used" magazines. It felt so good to be high-stepping down the halls in heels and a pencil skirt instead of slippers and a billowing hospital gown.

I made a bee-line to Room 5111, where I spent three weeks last November, and wrapped my arms around several of the nurses and PCAs (patient care assistants) who cared for me. I'll never forget them!

ONE YEAR AGO TODAY: I tried to play the "cancer card."

Let's Rock Out in Memory of Richie

Michelle Klein-Hass sent me more information about the benefit tribute concert for her husband, Richie Hass, who lost his life to multiple myeloma (MM) on March 21.

This is a great opportunity to experience new and different music in an unfamiliar venue, the Echoplex. (I never knew cancer could be so broadening !) You'll also help raise money for MM while celebrating the life of a passionate musician and human being. Sounds to me like a win-win-win-win.

Let me know by email if you'd like to join my family and me at this event.

Celebrating the life and music of Richie Hass


Proceeds will be contributed to the International Myeloma Foundation
1154 Glendale Blvd. Echo Park, CA.
From 4:30pm to 11:00pm, in order of appearance
(in Club terms, which differs from reality)…
The Probe
ChromoSphere with Marc Mylar
Poets Jack Brewer, S.A. Griffin and
Bag: Theory
With fellow improviser Tony Fate
DOS with Mike Watt and Kira Roessler
Jim Smith, M. Segal, George Radai
Nels Cline

The evening will end with a stage-filled improv session
in celebration of our talented & unforgettable friend.
DOORS OPEN AT 4pm $7.00 admission ALL AGES INFO: (213) 413-8200

Better Red Than Dead

If I was living during the "Red Scare" of the 1950's, that title alone would probably be enough to add my name to one of McCarthy's black lists. But let me explain . . .

A couple weeks ago, I went through a brief period of paranoia. I was relaxing in bed with a good book when, for no apparent reason, I decided to explore the area between and below my rib cage. I felt a hard, round lump, the size and shape of a South Sea Pearl. Panic! I called a couple friends at random and asked them to explore their bodies in search of the pearl. They found nothing. I met friends for drinks and instructed the other happy hour participants to lean back and probe for a pearl. Again, nothing. At brunch the following Sunday, I went through the same routine with two more friends.

I raised the red flag and sent an email to Dr. Forman. He suggested that it might be a lipoma, a lump of benign fat, and not lymphoma, but we could explore further during my appointment on the 14th.

In the meantime, I pulled up Google images of the sternum (breast bone), including the little piece of bone that drops down below the rib cage like a pendant on a necklace. At the end of the sternum is a pointed piece of cartilage called the xiphoid (Greek for "like a straight sword"). Could my xiphoid be rounded instead of pointed? And why couldn't I feel the rest of the bone connecting to the rib cage?

Dr. Forman examined me today and concluded that it was in fact my xiphoid, not a swollen lymph node. We had a good laugh and I sighed in relief.

But, hey, the way I figure it's better to be a little red (embarrassed) than dead.

I received my latest blood counts and have nothing to be embarrassed about in that department:

Monday, April 14, 2008
(Numbers in parentheses are normal ranges.)
WBC 4.3 (4.0-11)
RBC 2.95 (3.8-5.2)
HGB 10.6 (11.5-15.5)
PLT 126 (150-350) (WOO HOO!)

Saturday, April 5, 2008

WBC 3.6 (4.0-11)
RBC 3.00 (3.8-5.2)
HGB 10.8 (11.5-15.5)
PLT 104 (150-350)

Wednesday, April 9, 2008

The Secret

This morning I met with a dietitian at the City of Hope to talk about gaining weight. She revealed to me the secret to packing on pounds, which I've summarized below:
  • Eat more.
  • Eat high calorie foods.
Can you taste the sarcasm? Too bad it doesn't have calories.

(Actually, I'm making progress. I've gained 2.5 pounds in the last four weeks.)

ONE YEAR AGO TODAY: A surprise visit from Dr. Michael Friedman, CEO of CoH.

Tuesday, April 8, 2008

Celebration of Life

"Imagine being surrounded by thousands of people who are grateful to be alive."

That's how Christine describes the Celebration of Life event at City of Hope, an annual reunion for patients who have undergone bone marrow or stem cell transplants.

Christine, a young, vibrant Filipina film maker, has an amazing story. Go to her blog and watch the "Original Plea for Help" and "And What Followed" YouTube videos. I guarantee that you'll fall instantly in love with her.

I had looked forward to meeting Christine in person at the Celebration on April 25. As a matter of fact, we had planned to have our pictures taken together with our mutual friend Nancy, another amazing City of Hope patient with a compelling story. We may have to get in line because City of Hope has selected Christine as one of their two media spokes people. Best of all, CoH is flying her bone marrow donor, Kent, all the way from China. Their first-time meeting will be in front of a few thousand guests (including Christine's family flying out from New York) and a dozen television cameras. I get cold chills just writing about this.

The event, which will also include remarks by Dr. Stephen Forman (my doctor, at left with Dr. Phil), entertainment by former patients, a visit by former Dodgers manager Tommy LaSorda and lots of food and games, will culminate in a group shot of all of us survivors.

Even if I don't get that talked-about photo with Christine and Nancy, I will have a cherished photo of the thousands of us who are in deed grateful to be alive.

Photos courtesy of City of Hope.

ONE YEAR AGO TODAY: I contemplated the "right size bag for the right size job."

Saturday, April 5, 2008

I Love Latin

Don'cha just love Latin? Doctors, scientists and priests often use it to make the mundane sound high falutin'.

For example, doctors from the Dermatology Grand Rounds have concluded that I may have cutis laxa, which is Latin for loose (or lax) skin. Before you say, "DUH," keep in mind that this is an actual medical condition. describes cutis laxa as a "rare, inherited or acquired [mine is acquired] connective tissue disorder in which the skin becomes inelastic and hangs loosely in folds. . . . It may be preceded by an inflammatory rash." It certainly sounds and looks like me.

I'll visit my dermatologist again next week for another biopsy that will measure the amount of elastin in my skin.

My top three questions are:
  • How did I get this? (Answer: unknown)
  • What, if anything, can we do to stop the spread?
  • What can we do to cosmetically improve the look of the loose skin?
I asked my USC liaison resident if any of the other doctors thought that my condition was related to natural aging, loss of weight or loss of muscle tone. "Oh, no," she said. "The doctors were very impressed with your case. Everyone was in agreement that your skin is abnormal."

I don't know why that makes me happy to hear. I guess, in addition to being validated, I'm glad that none of the pros think that my skin is just naturally old and flabby.

I didn't mention it to my USC resident, but I suspect that I also have at least two other disorders: gluteus laxa (saggy butt) and mammo laxa.

Presentations, Paranoia and Platelets

This morning, another City of Hope patient, Lauren, and I met with the staff and volunteer directors of the CoH Speakers Bureau. Lauren, who had an allo stem cell transplant for acute lymphoblastic leukemia (ALL) two years ago, and I are now official members of the bureau and may be called upon to be the "patient speaker" (as opposed to those "impatient speakers") at CoH support events all over the country. I love City of Hope and am thrilled to be able to do this. (Not to mention, the speaker and a guest receive an all-expense-paid trip to the host event city.)

On the way to CoH, I glanced down at my left leg. It looked as though someone had scratched the entire length of my quadricep, but the skin wasn't broken. Instead, there were a series of tiny red dots below the surface of the skin. This pattern is often a sign of bleeding through the blood vessels, an indication of low platelet count.

When our speakers bureau session was over at noon, I rushed over to the Evaluation and Treatment Center (aka Emergency Room) so that they could do a blood draw and complete blood count. The nurses (including one of my favorites) had never before seen anything like it.

I was relieved to find out that my counts are strong, and my platelets have finally broken 100 for the first time since my transplant.

Saturday, April 5, 2008
(Numbers in parentheses are normal ranges.)
WBC 3.6 (4.0-11)
RBC 3.00 (3.8-5.2)
HGB 10.8 (11.5-15.5)
PLT 104 (150-350)

Of course, I still don't have a clue about the strange phantom "scratches" on my leg.

Wednesday, April 2, 2008

Show Me Some Skin

Last night, nearly 20 dermatologists filed in one or two at a time to view the "elephant woman" at the USC Keck School of Medicine Dermatology Grand Rounds.

They tried not to make me feel self conscious. "Interesting" was the favorite adjective, but "dramatic" and "significant" were also used to describe my slack skin. At least noone gushed, "GROSS" or "EWWW." One doctor in private practice developed an interesting theory (or was it a dramatic theory) about the destruction of white cells and loss of elastin and collagen.

I was spared the indignity of a hospital gown, so my choice of civilian clothing was very important. I wore a knee-length skirt, a spaghetti-strap top and a modest tailored jacket. When a doctor entered the room, I peeled off my jacket and showed off the skin around my arm pits. When they asked me to show them my torso, I shyly lifted up my tank top. Finally, when they reqested a peek at my gams, I slowly raised my skirt to reveal the mottled skin at the top of my inner thighs. (I had the foresight to wear boy-cut underwear.)

I haven't shown so much skin to so many people since. . . . Well, come to think of it, I've NEVER shown so much skin so freely to so many people.

One observant doctor was concerned about a series of one-inch slashes on my back. I asked him if they looked like cat scratches. "Yes," he said excitedly. "They look just like cat scratches." "Oh. Those are cat scratches. I have a cat who likes to piggy back on my shoulder and sometimes he digs his claws in," I explained.

I wasn't allowed to attend the session where the doctors discussed my case. Maybe that's because they get to let down their guards and say "GROSS" and "EWWW" among colleagues.

Tuesday, April 1, 2008

The Green-Eyed Monster and the Myeloma Monster

I went green last summer.

Not green as in driving a Prius or using those twisted light bulbs. I went green with envy.

As I was trying to pump out the minimum 2 million stem cells for my stem cell transplant, I looked on enviously as other patients in the transfusion center came and went in two or three days. I watched wistfully as their nurse coordinators scheduled their stem cell transplants.

One of the patients who came and went in two days was Richie, a rail-thin musician with multiple myeloma (MM). He and his wife, Michelle, a full-figured self-proclaimed computer geek, seemed like an unlikely match, but it didn't take long to see that they were devoted to one another. After they smooched like newlyweds, Michelle announced, "We just had our 20-year wedding anniversary, and I want to make sure Richie's around for another 20."

I had no doubt that Richie would be around for another 20 years. I could even picture Richie and Michelle clinking glasses on their 50-year wedding anniversary. After all, they were at the City of Hope in Dr. Forman's capable hands. Best of all, Richie was pumping out those stem cells like his life depended on them. In two days, he produced 4 million stem cells, twice the minimum and about 20 times my measly two-day harvest. He was well on his way to a successful stem cell transplant and certain remission.

Richie checked in to Hotel Hope on September 7 for his stem cell transplant and immediately went into remission. But six months later, the MM monster returned, stronger and meaner than ever. On Friday, March 21, Richie went to the City of Hope for what would be his final chemo treatment. Later that same day, Michelle found him dead in their home.

I'm so sorry that I was jealous of Richie's bountiful stem cell production. I'm even more sad and sorry that Michelle won't get to live those "20 more years" with her beloved husband.