Back from Stanford and San Francisco

I met with EOS specialist Dr. Jason Gotlib at Stanford Cancer Center on Monday. He still wants to completely rule out any "secondary" causes of elevated EOS before arriving at a diagnosis of HES (hyper eosinophilic syndrome).

Once I've tapered off the steroids in a few weeks, I'll arrange for allergy testing. This is just a matter of doing due diligence because I don't seem to have any allergy symptoms. And Dr. Gotlib is the first to acknowledge that allergies rarely cause EOS to soar into the sky-high "severe" range that mine reached last summer.

So. . . no quickie diagnosis and no quickie cure. If it's determined I have HES, Dr. Gotlib would like to include me in a clinical trial of a monoclonal antibody called mepolimuzab. The drug does a great job of controlling EOS without all the harmful, long-term side effects of steroids.

And if "monoclonal antibody" rings a bell, it could be because I've written about another miracle drug in the same category. Rituxan (aka Susan's relapse prevention), the quarterly maintenance drug I take through an IV, is in the same drug class.

The Battle Zones

As if it's not enough to be fighting stage four breast cancer, Altadena resident Megan Jones is up against a David versus Goliath battle against her insurance carrier, California Blue Shield.

At age 36, and without a family history of cancer, Megan was diagnosed with an aggressive form of breast cancer that had already spread to her liver, brain, and bone. Everyone was shocked.

Treatments began immediately, and chemotherapy and targeted therapy have started to shrink her tumors. Everywhere, that is, except for in her brain. When her doctor prescribed additional, cutting-edge treatments that could eliminate the brain tumors and prevent new growth, her insurance company, California Blue Shield, denied coverage.

She appealed, but the insurance company is still in denial. Megan has elected to receive the treatment, with or without the insurance payments, and her family and friends are trying to raise $100,000 in 100 days to cover the costs.


I received the following email from City of Hope research scientist Dr. Susan Kane:

You might know Megan Jones from political or city circles. What you might not know is that she has been diagnosed with an aggressive form of breast cancer and is currently undergoing costly therapy. Please go to http://megansfund.chipin.com/megans-fund and consider making a donation. As a breast cancer researcher, I know that Tykerb is a cutting-edge therapy that holds great promise for the treatment of breast cancer. Megan is a young, energetic and caring individual. Let’s help her fight the fight of her life.

Cancer isn't fair. Insurance companies aren't fair. I hope you'll consider leveling the playing field a little by either making a donation or spreading the word about Megan.

Breakfast in Beverly Hills

What happens when a frugality fiend decides to splurge on breakfast in Beverly Hills? Find out at Open Mouth, Insert Fork.

Hapa Happenings

It's been a Hapa-intensive week for me.

I joined "Team Krissy" at a bone marrow drive at Cal State Long Beach on Wednesday afternoon. It was exciting to see how the volunteer team works tirelessly to sign up minorities and mixes (and even European whites) for A3M and the National Bone Marrow Registry. We're hoping that one of our new recruits will be the match for Krissy Kobata, a 26-year-old Hapa who needs a bone marrow transplant.

This is the way we swab our cheeks. One Long Beach student works four swabs at the same time. The girls take a more traditional, one-swab-at-a-time approach.

I drove from Long Beach to the Landmark Theatres in West LA to see the screening of Half Kenneth, a beautiful film about two Hapa brothers who become orphans while they're interned at Manzanar during World War II.

Tonight, I'm going to the Mixed and Matched Concert and Bone Marrow Drive at USC and will, once again, join Team Krissy and A3M in recruiting potential donors for the Registry. Hapa Athena Misa's PSA about the need for multi-racial donors will be shown at tonight's event. You can view it here. (Krissy and I are interviewed in the clip. Just don't make fun of my bad-hair day.)

Finally, my new friend Bill and I are co-captains for the Pasadena Relay for Life for the American Cancer Society on May 30-31. Our theme is "Mutts for Marrow," and, once again, our goal is to draw attention to the need to sign up minorities and mixes for the Registry. You don't have to be a mutt or a minority to join us for an hour or for 24 hours during the Relay. And, if you sign up, I may even let you borrow my dog bone tiara.

Shedding Some Light on EOS

Since eosinophilic blood disorders are extremely rare, only a handful of doctors in the country specialize in them. One of them, Dr. Gotlib, is a hematologist with the Stanford Cancer Center. Since I've been itching to take a trip to SF anyway, I decided to combine the getaway with a visit with Dr. Gotlib on April 27.

He'll review a year's worth of my blood charts and my doctor's notes before our appointment next Monday. I'm eager to find out his conclusions and recommendations for a course of action.

I want to get away from the watch, wait, react mode.

In the mantime, I'm still enjoying the extra boost of Prednisone-fueled energy, I'm eating like a horse and I'm not gaining or losing weight. All good things.

It's Cupcake Time

Wouldn't ya' know that the shop that sells the cupcake voted best in Southern California is practically in my back yard.

I'm back on the infamous "booty or bust" tour and, on a quest for calories, I decided to check out Polkatots Cupcakes. Go ahead. Take a sample at Open Mouth, Insert Fork.

Writing While 'Roiding

Last night I slept like a baby for 6.5 blissful, uninterrupted hours.

Darn.

After my near-sleepless but productive Sunday night, I had looked forward to continuing my writing streak. The marketing plan for a non-fiction book. A scene from my much-talked-about (by me) one-woman show. The grocery list. (Hey, with the way I have to eat these days, that's like writing a novella.)

It's probably just as well that I slept through the night. Trish had cautioned me about the possible perils of writing while on a jittery, steroid-induced high. Who knows what edgy, raw drivel I was churning out. But then the jerky wheels began to turn and I thought, "What if I create a flash fiction anthology blog for 'roid writers?"

I'd get submissions from eosinophil sufferers, asthmatics and arthritics, not to mention post-transplant patients. (No ball players; that's a different kind of steroid.) Was I on to something?

No, that just seemed a little too narrow. What if I opened up submissions to all insomniacs? I could call the blog the Night Writers instead of the 'Roid Writers.

Who isn't sleeping these days? The grieving. The lonely hearts. Parents of infants. Parents of teens. Any woman over 50.

And, of course, the crummy economy has been responsible for keeping countless eyes wide open in the middle of the night. A recent story in the LA Times about the growing use of sleeping pills ended with this line from a sleepless college student, "I'm stressed out about the rest of my life."

So, I guess the better question would be, "Who IS sleeping these days?"

Um, that would be me. Even with the 'roids.

Mixed and Matched - Bone Marrow Drive and Hapa Concert on April 24

I love being a hapa (an Asian mutt). It doesn't take long for me to reveal to a new friend that I'm 50% Japanese, 50% Scottish and 100% hillbilly.

So, naturally, I'm excited about attending this FREE concert with all-hapa performers, especially since it's co-sponsored by A3M and will be promoting my pet cause - getting minorities and multi-racials signed up for the National Bone Marrow Registry.

I'd love to have you join me.

Grand Zero Performance Cafe
USC Campus

615 Childs Way

Los Angeles

Positive Side Effects

What do you call those people who fake pain in order to get their doctors to prescribe narcotics?

It would be hard to fake a major spike in eosinophils in order to get a Prednisone prescription, but I can see how it would be tempting to try. This time, I'm riding the wave of the positive side effects of the 'roids.

First of all there's that whole metabolic rate increase. I've lost 3/4 pound while typing this blog post. Not that I need to lose any weight, mind you. In spite of overzealous overeating, I've lost eight pounds in six weeks (five from the EOS and three from three days of 'roids). I obviously need to step up my pig-out pace, and the timing couldn't be better. My refrigerator has become a shrine to all things pork: ham, sausage and bacon are shoulder-to-shoulder. Low fat and no fat products are banned. Sweets are in abundance. (If only I could find the three-pound bag of Jelly Bellies I hid.) Lucky me, and I mean it this time without a trace of irony.

And then there's the insomnia. (Don't be surprised to find me leaving blog or Facebook comments at 2:30 am and then again at 4 am after a 2-hour nap.) I'm not fighting it this time; I'm simply getting things done. Just last night I finished writing the great American novel. Well, at least a flash fiction version of it. I was inspired by pal Paula Johnson's new Rose City Sisters flash fiction anthology blog that launches on May 1.

I started out reading good examples of flash fiction, but those weren't the least bit inspiring. The brilliant stuff made me want to throw in the power cord before my fingers even hit the keys. The bad stuff was an entirely different matter. "This stuff is crap," I thought. "I can do better."

I've completed my 1,000-word submission. It's definitely not brilliant, but I don't think it's crap either. (Alas, it likely fits in that vast wasteland of mediocrity.) But not to worry. Paula points out that the goal is to try something different and to have fun in the process. By that measure, I succeeded.

Now excuse me while I slip downstairs and work on gaining back that 3/4 pound I just lost.

Y'all Come for Biscuits and Gravy

I've lived in So. Cal. for 33 years, and not once have I broken biscuits with a friend. Biscuits and sausage gravy, that is.

That all changed this morning when a dozen friends answered my plea to eat biscuits and gravy with me.

Wanna read more? You know where to go: Open Mouth, Insert Fork.

Love Bugs and Distraction

No, that's not my new pet name for eosinophils.

It was my pet name for my daughter and her good buddy Meryl, an exuberant girl who lived next door to us before her family moved back to England. She's now 22, a graduate of the London School of Economics, a law student and a field rep for a Member of the UK Parliament. Mark my words: Meryl will one day be a Member of Parliament, if not the Prime Minister of the UK.

I got to see Meryl and her mom, my friend Carla, under the worst of circumstances this week - for the funeral of Brian, Carla's brother. I first heard of the City of Hope and bone marrow transplants 15 years ago when Brian was diagnosed with leukemia. After two transplants and 15 years, we assumed he'd live forever (or at least long enough to see his niece Meryl become an MP). Battered lungs and complications from pneumonia were the final culprits.

Brian was a City of Hope "Success Story" on the website, but, apparently, you are no longer considered a success if you die. His story has been removed from the site. His death makes me sad, but the removal of his moving story makes me sadder. It seems like the City of Hope should just move them to a special "in memory of" section instead of obliterating all traces.

I was moping about this when I received a call from Meryl this morning. She called to say goodbye, and then asked me if I remembered the "Love Bug" song that I made up for her and my daughter. Of course I did, and I sang it for the future Prime Minister of the UK, loud and clear.

And now I'll sing it for you:

LOVE BUG
Sing a new song
LOVE BUG
Sing it out strong
LOOOOOVE BUUUUUUG!

Here We Go Again

I returned to the City of Hope today for the results of my Tuesday tests, and, sure enough, the EOS count jumped another 10% in one week.

I won't lie to you; those little buggers scare me. I'll be relieved to start the attack with a daily dose of 60 mg of Prednisone, the drug I call my ironic little diet pills. I'm already losing a pound a week (five pounds total), thanks to the EOS. If I'm not a complete glutton, I will now lose weight at an even faster rate. Let the gorging begin!

My doctor is still reluctant to give me an official diagnosis of HES (hyper eosinophillic syndrome), primarily because it's such a rare blood disorder. We knocked one rare blood cancer into remission. What are the odds that I would immediately develop another, unrelated blood disease?

Our short-term strategy is to decimate the EOS with the Prednisone and eventually taper off. And then we'll play the watch and wait (i.e. monthly monitoring) game to see if they come back again. If they do, then we'll develop a different plan.

This afternoon, I used the City of Hope computers while I was between appointments. Both hands were on the keyboard, frantically trying to set up interviews for an article that's due tomorrow. I started coughing, and my busy hands didn't make it to my mouth in time. The "gentleman" (not a patient) sitting next to me used his nastiest tone to admonish me, "You need to cover your mouth." I used my surliest voice to respond in mock politeness: "I'm so sorry that I failed to do that. I will work hard to be better the next time, especially since you have taken the time to remind me of this in your nicest possible voice."

I actually did work hard to supress my cough and cover my mouth after that, especially when I was in the waiting room with masked patients. I was trying to make amends for my earlier bout of bitchiness.

Lord help us all if the Prednisone makes me more irritable.

Nipping the EOS in the Bud

I wrote last week about my misbehaving EOS. These are the same devious little culprits that infiltrated my lungs and GI tract last year and made me very, very sick.

I was originally scheduled to retest my blood a week from today, but I got a little nervous about waiting. Each day, I can tell that I am becoming incrementally sicker. A little more coughing. A little more fatigue. A little more short of breath. I don't think you can tell by looking at me or talking to me (except for the cough) that I'm not feeling up to par, but I am all too familiar with the mild symptoms that once turned into a three-month nightmare.

I finally emailed my doctor today and reported the progression. He scheduled me for bloodwork, a chest x-ray and pulmonary testing tomorrow and a consult on Thursday. He said that it's likely that I'll be put back on prednisone, the drug that's like Phen Phen for my lean body. To keep from losing weight, I'll have to start consuming 3,000 to 3,500 calories a day. Woe is me!

Actually, the timing couldn't be better. I'm planning to make biscuits and sausage gravy on Saturday morning and a calorie-laden Easter dinner on Sunday. (I think a serving of the scalloped potatoes alone has 2,500 calories.)

The Big C HIts the Book Shelves

Cancer has long been a popular cinematic plot element, from Love Story to The Bucket List.

(As luck would have it, American Airlines showed the tragic movie Love Story on our flight to Hawaii, just two weeks after my MCL diagnosis. And by "tragic," I don't mean that Jenny dies. I mean the DOA script.)

If you're interested in a cancer patient's review of cancer movies, check out this list compiled by The Assertive Cancer Patient. (Click on the movie title to read the witty reviews.)

Even though most of us could easily tick off a half dozen cancer movies, we'd be hard pressed to come up with even one fiction book with cancer characters.

My friend Barbara (one of six Barbara friends), who is working on an MS in Library Science at UCLA, just sent me this link to a list of a dozen novels with characters with the Big C.

I've always thought it would be interesting to create an unsympathetic cancer character. (Jack Nicholson fits the bill in Bucket List.) Better yet, imagine the possibilities of an evil bone marrow donor who frames the recipient of his life-saving stem cells. They have the same blood DNA, ya' know, so there's got to be something a skilled (and twisted) writer could do with that.

The Obsessive Type

When you're a blood cancer patient, it's easy to become obsessed with your blood counts. That chapter is behind me, but now it's equally tempting to become obsessed about the rapidly mutliplying EOS in my blood.

It's nice to take a break and become obsessed with something else. The color of houses instead of the color of blood. The number of coats of paint instead of the number of white blood cells. Paint palette trends instead of EOS trends.

It's doubly nice when you can make that obsession into a story for the Home & Garden section of the LA Times. Read my story, House Paint as Obsession. (The color palette of the house in the photo, by the way, may look familiar. It's the one I poached for my house.)

Fast Food

What do you do when you want lunch in a hurry?

Go to Open Mouth, Insert Fork to find out how to have an Indian lunch at home in under 4 minutes, 4 dollars and 400 calories.

Trend Setting

I once had a writer friend who was a frequent contributor to Parade Magazine, the fluff-filled tabloid that's inserted into millions of small-town and big-city newspapers every Sunday. She specialized in spotting "trends," a task that's much easier than it sounds. Her editor told her if she could come up with three examples, she had a trend on her hands.

Of course, in medical parlance, "trend" has a different meaning - "general direction in which something seems to move."

Since I tapered off the steroid Prednisone in November, we've been watching my blood counts for changes in the Eosinophils (EOS)*. I started off with zero EOS, but then a trend started to develop. Every month, the EOS count would increase by 40 to 50%. If this trend continued, I figured I could be in deep doo doo by July (thought I'd throw in a little more medical speak).

I went in on Monday for lab work, and discovered that the trend wasn't continuing at the same pace. Those pesky little EOS decided to be fruitful and multiply exponentially. The percentage of EOS in my blood jumped up from 5% to 30% in one month (a 500% increase).

To be honest, I wasn't surprised. My hacking cough returned about two weeks ago. I've noticed that I'm short of breath after delivering a long-winded monologue or walking up two flights of stairs. Mild fatigue has set in, and I frequently join the cats in afternoon naps. At this point, the symptoms aren't impairing my ability to get things done or to enjoy life.

My doctor has asked me to reschedule my next appointment in two weeks instead of four. Let's just hope that this latest trend doesn't continue.

*EOS refresher course: The EOS are a component of the white blood cells designed to fight allergies or parasites. A few of them sit around twiddling their thumbs until they're called into action. When they're needed, they multiply and fight off the parasite with toxins. Normal range of EOS in the blood is 0 to 5%, with an optimal count of 2.5%

Sometimes, the EOS go haywire for no known reason. This is called idiopathic hypereosinophillic syndrome (HES), a rare condition that I was hoping I didn't have. If left untreated, it can cause severe damage to organs, especially the heart and lungs.

Eos is also the goddess of the dawn. I'm channeling her now, hoping that she'll lead me to the light.