My Cancer . . .

When NPR reporter Leroy Sievers asked his cancer blog readers to finish the sentence, "My cancer. . . ," he received more than 350 replies. The responses were as diverse and dynamic as the individuals.

To celebrate the amazing community that Leroy has created, Beth, an NPR staffer, published a photo gallery of moving pictures and inspirational words. Be sure to go to the June 26 post to take a look. You may recognize at least one of the contributors.

None But the Brave

I've been smiling a lot more lately.

No, I'm not happier. I'm just more vain.

You see, if I'm smiling or animated, I like the way I look. But when I'm writing or reading or thinking or just sitting around doing nothing, the little corners of my mouth curl down into a sad frown. It's a very unattractive look that doesn't necessarily reflect the way I'm feeling.

Even the animated Ellen DeGeneres, who turned 50 this year, commented on how beautiful and serene a 20-something guest actress looked without turning up the corners of her mouth. "If I'm not smiling," Ellen explained, "I look sad or mad."

I was tired of looking sad or mad when I felt happy and serene. The solution was just a syringe of Radiesse away. My dermatologist used my face as a pin cushion and punctured my mouth area 40 times (yes, I counted) with the miracle solution. Some of the punctures were painless, others felt like gnat stings, and a few were like bee stings.

And they say cancer patients are brave.

Vita Interruptus

Right after my initial diagnosis , I met Brad, a fellow "cell mate" with the same disease (MCL, blastic variety) going through a similar regimen at the same time. We became cheer leaders for one another through our treatments and recovery.

After I posted the good news about my six-month clean scans, he sent an upbeat reminder about the positive prognosis for us blastics. Just a few years ago, the diagnosis was a death sentence with a one-year survival rate. But today's aggressive treatments have pushed that time line so far out that, as Brad quipped, we could easily outlast our non-cancer counterparts.

But the very next day Brad reported that his oncologist decided to order a CT scan for a swollen lymph node. He learned yesterday that, ten months after treatment completion, the MCL is back with a vengeance.

A few weeks ago, Brad and his wife decided to "just do it" and pursue their dream of living in the country. They both found teaching jobs at a rural school district and were planning to sign the contracts today.

But sometimes life gets interrupted, or "vita interruptus" as I like to call it. Because of insurance and medical leave issues, they've decided to stay at their current school district. Their dream of country living will be deferred until Brad completes a donor stem cell transplant at MD Anderson.

Please keep Brad and his family in your good thoughts and prayers.

The heat is on . . .

In the natural ebb and flow of things, my mind is off cancer (for at least another six months) and on to more critical things, like food.

Check out my food blog to find out one of my favorite hot-weather indulgences.

Plenty to shout about!

I received great news today:

- My PET and CT scans are CLEAN.
- My blood counts continue to rise.

When I heard the news from Dr. Forman, I felt as jubilant as Tiger Woods after he sunk that difficult putt on the 18th hole.

As Newsweek editor Jonathan Alter wrote in his "My Life With Cancer" article, the semiannual scans are like a visit to the parole officer. "When the scans are clean, it's worth another six months of freedom, though with no guarantee of extra time for good behavior."

My EOS (a type of white blood cell) counts are still abnormally high at 53% (0-4% is normal). I'm also losing weight again (three pounds in two weeks) even though I'm still trying to pack on a few more pounds. (These two things may or may not be related.) At any rate, I'm going off the minocyclin prescribed by my dermatologist to see if it's causing these whacky side effects.

Audacious

The entrance to the auditorium at the Hollywood Presbyterian Medical Center has a plaque with the definition of the word "audacious."

Audacious:

1. bold or daring; fearless
2. not restrained by a sense of shame or propriety; rudely bold; brazen

As soon as I walked through those auditorium doors, I knew that I ran the risk of being branded as "audacious."

Instead of simply reading "Pole Dancing," I performed in a hospital gown and red feather boa with my trusty IV pole dance partner. We strutted and gyrated to Robert Palmer's "I Didn't Mean to Turn You On" and "Addicted to Love."

I was in a "fight or flight mode" for the entire 36 hours before the performance. But, once I got on stage in front of an audience of 300 who'd come to see "The Big C," I realized I was having fun. When the audience started clapping and whooping, I really got into it.

Best of all, I witnessed some amazing performances and met some passionate, positive people.

I had "met" the beautiful model and "actorvist" Sharon Blynn online at her
"Bald is Beautiful" website before meeting her in person at the Big C event.

Michael Goldberg, Sharon, Susan and talented writer Beverly Ward

Our producer, Christian Meoli, with Michael


I finally got to meet the delightful Christine Pechera ("Saffron Butterfly"), the CoH
patient who met her bone marrow donor at the 2008 Celebration of Life.

I was so happy to find out that Cindy and George were proud,
not embarrassed, by my audacious behavior.

Someone was videotaping the event, so I hope to receive a copy.

I should . . .

I sit on the chaise lounge
sipping a solitary mimosa,
soaking in the sun
like a clever cat.

And then a load of "I shoulds"
washes over me
like unwashed laundry.

I should deadhead the David Austin roses.
I should decapitate the Shasta daisies.
I should pour sunflower seeds into the bird feeder.

I should, but I don't.
Instead, I stroke the cat,
sip my mimosa and
fall asleep in the sun
with no regrets.

[Anyone who has seen me in the last three weeks knows that I've been in a frenzied, accomplish-everything-you-can-before-manic-Monday mode. Aren't you relieved that I slowed down today?]

Does she or doesn't she?

Baby Boomers may remember a popular ad campaign launched by Clairol in 1956. The voice over asked, "Does she or doesn't she?" while a beautiful blonde tossed her golden locks. I'm asking the same question these days. I just wish it was about hair coloring instead of cancer. And it would be nice if my hair dresser, not my oncologist, was the one who knew for sure. (You know your life is topsy turvy when you see your oncologist at least once a month, but you haven't seen a hair dresser in 16 months.)

I'll find out the answer to that age-old question on Monday. In the meantime, I've completed my PET and CT scans at the City of Hope. I had a strange experience while I was in the CT tunnel yesterday. I suddenly became very nauseous and asked the technicians to stop the presses. Then I threw up violently into a tray. Repeatedly.

We're not sure why I had this reaction. It could have been the berry bromide shakes that I chugged at the rate of two ounces per second that day. Or it may have been an allergic reaction to the iodine contrast that I received through an IV. Or maybe it was the Happy Meal that I wolfed down right before the scan.

At the same time, my inner lip suddenly puffed up. I looked like I'd just received a collagen injection or a bee sting. I stuck around for a while for "observation," but no new hives or Happy Meals surfaced.

In spite of the gag-inducing milkshakes and the prospect of throwing up, I enjoy going in for my CT scans. I always schedule them for the early afternoons because I know that my favorite technician, Joanne, will be working. We both talk a mile a minute until the little smiley face light in the machine says, "Hold your breath." After the 8-second break, I come up for air and more fast-paced conversation.

While I sat in the observation room, Joanne came by carrying a bright-colored reusable grocery bag from Jensen's Grocers. After I admired it, Joanne explained that she bought a half dozen because they were just 99 cents. Then she removed her lunch from the bag and gave it to me as a gift. (I wouldn't say that I've found the "perfect purse" - just the perfect reusable grocery bag.)

Is it any wonder I love going in for my CT scans? Not to mention the fact that they answer the age-old question, "Does she or doesn't she?"

(If you click to enlarge the photo, you can get a closer look at my thick, curly locks.)

Pole Dancing x 2

It was about this time last year when I first had the opportunity to perform "Pole Dancing" at the Big C, Cancer Survivor Day, at the Hollywood Presbyterian Medical Center. It turned out that I missed the Big C because I was at the Big H (Hotel Hope), but I did get to read at Dutton's Book Store, the now defunct independent book store in Brentwood.

This year, I'll be performing (NOT reading) Pole Dancing twice in the same week:

Pole Dancing I:
Gorgeous Stories
Friday, June 13, 7:30 pm
Church of the Angels
1100 Church St.
Pasadena
$8 admission includes light potluck dinner after performances

Pole Dancing II:
The BIG C, Cancer Survivors' Day
Saturday, June 14,
Hollywood Presbyterian Medical Center Auditorium
Catered pre-show reception at noon
Show begins at 2:15 pm
1300 N. Vermont Ave.
Los Angeles
(Parking on Fountain Ave. entrance)

ONE YEAR AGO TODAY: I contemplated what to do when a friend has a serious illness.

A Stem Cell Miracle and a Revealing Look

By now, most Cancer Banter readers know the difference between an autologous (self) and allogeneic (donor) stem cell transplant. Both procedures are commonly used to treat blood cancers, such as lymphomas (both Hodgkins and non-Hodgkins), leukemias and multiple myeloma.

That's why I was blown away when I saw an article in today's LA Times, "Stem cells apparently cure boy's fatal [skin] disease." (For an excellent, explanatory video produced by the University of Minnesota, click on Nate Liao.)

The "fatal disease" was a genetic skin condition known as recessive epidermolysis bullosa. Patients with this disease lack "a critical protein called collagen type VII that anchors the skin and lining of the gastrointestinal system to the body." The result is extraordinarily fragile skin that "tears and blisters with minimal friction."

The only known treatment previously was to wrap the skin, mummy-style, in bandages. But a two-year-old boy from Minneapolis received an allogeneic stem cell transplant and has apparently been cured. The boy's body is now pumping out the missing collagen type VII.

This is the first case of using a stem cell transplant to treat a condition that does not involve blood, according to the LA Times. The whole thing amazes me. I can't even begin to speculate why a stem cell transplant would stimulate the production of collagen. And, apparently, doctors and scientists must be scratching their collective heads about the connection too. Notice that the article and headline didn't say that the stem cells cured the disease; it said that the stem cells "apparently" cured the disease.

I also have a rare dermatological skin disorder, cutis laxa, that, fortunately for me, is not fatal. It does, however, make me morbidly afraid to be seen in public in a tank top or swim suit.

I've been taking baby steps in revealing my deformed skin. I've started by wearing cap-sleeve T-shirts that show the wrinkled skin at the top of my arms. I recently became a little braver and wore a tank top to my strength training class at LA Fitness. Now, in my boldest move yet, I'm publishing a photo of the back part of my arm pit. As you can see, the crinkled area is circumscribed and there are clear demarcations between the healthy and unhealthy skin.

I've been documenting the skin condition with photographs so that my dermatologist and I can tell if the prescribed antibiotic I've been taking is effective in preventing the disease's spread (i.e. continued destruction of elastin).

For some less revealing shots (at least physically), click here and then type in "Carrier" as the password. My lovely and talented friend Skye has posted candid photos from my March 2007 "Bon Voyage Party" and February 2008 "Comfort Party."

A Day of Rest

I went to the City of Hope for my semi-annual PET scan this morning. As a confirmed claustrophoic, I can't enter the tunnel without a dose of Atavan. The problem is that it takes me an entire day to sleep off the anti-anxiety drug. Here's how my day went:

-7:30 am Arrive at City of Hope and strap on name bracelet
-7:35 am Thumb through Esquire Magazine. Read article (written by a woman) about ten things women find sexy about men
-7:40 am Tip the scales and visit the toilet
-7:45 am Take Atavan
-7:50 am Receive racioactive isotope through IV
-7:51 am SLEEP
-8:30 am Enter the PET scanner
-8:31 am SLEEP
-9:30 am Wake up and drive home with friend
-10:00 am Putter in garden, break fast with yogurt and blackberries
-11:00 am SLEEP
-2:00 pm Wake up groggy from sleep. Eat lunch. Run errand.
-3:00 pm SLEEP
-7:00 pm Wake up groggy from sleep
-11:00 pm Bedtime, but NOT SLEEPY

I've been running on two speeds lately - fast and faster - so it was great to have a day on the slow, slower and comatose settings.

Next week, I'll have my CT scan on Monday and my quarterly dose of maintenance Rituxan on Tuesday. Then the following Monday, June 16, will be an "evenlope day." That's when I'll review my scan and blood results with Dr. Forman.

ONE YEAR AGO TODAY: I experienced another postponement of treatment because of low blood counts.

"I have a friend . . . "

When I was first diagnosed with cancer, several well meaning friends offered to hook me up with other cancer survivors. "I have an uncle who beat colon cancer. Would you like to talk with him?" "My best friend is a six-year breast cancer survivor. I'm sure she'd love to talk with you."

I appreciated their offers, but I didn't want to talk with people with just any cancer. I wanted to connect with others with my rare blood disease, mantle cell lymphoma (MCL). I felt like I struck gold last year when my friend Reiko informed me, "My colleague Dave had the same thing." Not only did Dave have MCL, but he also had a quirky eye tumor, just like me. Considering that there are just 4,000 new cases of MCL diagnosed each year and less than 1% of thse cases involve the optic area, the odds are staggering that we rare birds would find one another through a mutual friend.

Around the same time, Newsweek columnist Jonathan Alter became the poster boy for MCL by writing a cover story for Newsweek Magazine. Dave and Jonathan communicated three valuable messages to me:

- You are not alone.
- The treatment is rough, but temporary.
- Many, like me, have beat down the disease.

Now that I'm six months post auto stem cell transplant, I've also become a go-to girl for blood cancers. (I must remember to add that to my resume.) It seems that not a week goes by without someone emailing or calling me to find out if it's OK to give my name to a newly diagnosed blood cancer patient.

A couple weeks ago, a friend in Connecticut called to tell me that one of her colleagues in NYC was just diagnosed with MCL. Again, the odds are slim that one individual would have two friends with this disease. I talked with her friend and then followed up with an email with links to my favorite MCL-related websites, listserves and blogs.

Last week, I received a call at 10:30 pm on a weekday night. Noone calls me at this hour. It was my friend Eleanor, the grandmother of my god-baby and an oncology nurse at a San Fernando Valley hospital. "I'm sorry to call you at this hour, but you've got to talk with the girlfriend of one of my patients. She went with her boyfriend for a consult at the City of Hope and I think she had the same doctor that you had when you first started out there."

I listened to the young woman's story. Her 22-year-old boyfriend was recently diagnosed with acute lymphocytic leukemia (ALL). His local oncologist recommended that he go to the City of Hope for a stem cell transplant. But instead of being filled with hope after the consultation at CoH, she was filled with hopelessness and confusion. Because of the negative tone of their consultation, she and her boyfriend's family were ready to close the door on the option of this life-saving procedure at the CoH.

The young man and his family and girlfriend did in fact see the same doctor that I initally did at CoH. I told her that this doctor was neither a bad physician nor a bad person, but acknowledged that her bedside manner launched me on a quest to find another doctor at CoH. I begged the young woman to give City of Hope another chance. I also shared information about the second opinion by mail system at MD Anderson. The young woman asked me if it would be OK if her boyfriend's mother gave me a call, and I told her that I was eager to talk with the mom.

That mother hasn't called me back, but I still hope that she will. I ask myself why I'm so eager (over-eager actually) to talk with this particular mom. I think I want to take away some of her pain. And I want to tell her that everything's going to be alright. But, unfortunately, I don't have the ability to take away anyone else's pain. And noone, not even a doctor, can guarantee that "everything's going to be alright."

If she does call me, I plan to listen hard with my head and my heart. And then I'll recall the three messages that sustained me during the first weeks after my diagnosis.

- You are not alone.
- The treatment is rough, but temporary.
- Many, like my friend Ann, have beat down the disease.

ONE YEAR AGO TODAY: Cancer Banter went to a used-car lot.