Whatever happened to Joel?

Do you remember Joel, the young Teletubby-Nurse hating, Studio 60-loving, father of three who was scheduled for an allo (donor) stem cell transplant on June 13? Last week I caught up with his wife, Heather, in the waiting area. Joel recovered so quickly from the transplant that he spent just 22 days in the hospital instead of the usual 28+. Amazing! One week after his return home, he was back in action with his Torah study group. Joel is preparing to become a Rabbi.

Yesterday I was thrilled to see Peggy and R, a couple from Hawaii who are living at Hope Village while R undegoes treatment. Last time I saw them, R was about to go in for an allo SCT. (A year ago, he completed two back-to-back (tandem) auto SCTs, but relapsed after just six months.)

R's been "home" for two weeks since his discharge and he looked as tall, dark and handsome as ever, even behind his obligatory surgical mask. He usually wears flip-flops, so I was surprised to see him trudging in heavy cowboy boots. "The staff is giving him a hard time about gaining back weight, so he's going to try to trick them by leaving his boots on when he's on the scale," Peggy explained with a wink.

It's encouraging to see how well these transplant patients have bounced back, both physically and emotionally.

Funny Lady Returns to the Ice House in Pasadena

When Paula Johnson isn't serving as cancer correspondent, posting witty comments on Cancer Banter or creating clever communications for her clients, you can sometimes find her cracking up crowds with her stand-up comedy.

I missed her debut at the Ice House in March, but I'm determined to make it to "Chicks with Mics" on Thursday during Paula's return visit to Pasadena's comedy club. She'll be sharing the stage with a dozen other gals who desperately want to tickle our funny bones.

Will there be any cancer material this time? Paula tells me that she's "diversified" her act and will be yakking about cancer - just not MY cancer.

God willing and the platelets don't fall, I'll be there. I'll need a good roll in the aisle after five days of self-injections!

(Let me know if you'd like to join me.)

Next Steps

I'm back from my overnight at Hotel Hope, where I received a "conditioning regimen" of Cytoxan. I'm not suffering any side effects from the chemo, but I'm still groggy from the Benadryl and Atavan. As the anesthesiologist told me last week, "You're a cheap date."

Tomorrow I start a week-long round of daily self-injections of Neupogen, a drug designed to make the stem cells flee from the bone marrow to the circulatory blood. With just three doctor's visits, daily Heperan flushes and three-times-a-week bandage changes for my Hickman catheter, it will be a relatively "easy" week.

And then on August 6 we'll be ready to start harvesting stem cells. This will be like having a part-time job, albeit a very cushy one. I report for duty at 8:00 am and will sit in an easy chair for 4.5 hours. The machines will do all the work of collecting blood, sorting out the stem cells and then returning the blood to me, sans stem cells.

I'll be perfectly content sipping cranberry juice with one of those little bendy straws, munching graham crackers, chatting and reading books and magazines. God only knows how many days this can go on. Some people are able to produce enough stem cells in as few as three days, others can take up to ten days and some are never able to produce enough. Time will tell which category I fall into.

What I DIDN'T Do on Vacation

I didn't:

• Go to a doctor's appointment.

• Have a blood draw, transfusion, test or biopsy.
  

• Talk or think obsessively about the Big C.

• Do a single bit of cancer-related research.

• Huff and puff after a four-mile walking excursion.

• Pass out while single handedly flushing out my catheter line with Heperan.

• Wear my wig, scarf or hat while taking a hike through the redwood forests of Mill Valley.

• Feel self-conscious about the above.

BUT I did have a great time walking, shopping, eating and visiting with lots of good friends.

If it looks like a duck . . . .

According to two dermatologists, my sagging skin looked like, walked like and quacked like slack skin disease, but a closer look under the microscope revealed that I'm not that rare of a duck.

The biopsy reports show that the skin does NOT have T-cell lymphoma or any kind of cancer. The skin condition is definitely "abnormal" and Dr. Chang is still on the case trying to figure out why circumscribed areas resemble an aging elephant. He's requested several more tests to try to solve the mystery.

This, of course, is great news for many reasons, after the obvious "I don't have two forms of cancer." Could I have handled the pressure of being one in a billion or would I have turned into an insufferable "disease diva"? Here are a few of the demands I no doubt would have made:

• Provide six weeks of private sessions with a Pilates instructor before any photographs are taken for medical journals. (God forbid that photos of the bod generate as many "ughs" as the disease being photographed.)
  

• Hire Annie Leibovitz, not the attending physician, to take the photos.
  

• Incorporate an exotic background, such as a waterfall, or exotic animals, such as cheetahs or elephants, into the photo shoot. Avoid clinical locations like doctor's offices and labs.
  

• Stock the waiting room of doctor's offices with potato balls from Porto's.
  

Is it Wednesday yet?

Gosh, it's been days since I used words likes "platelets" and "catheter" in casual conversation. Here are five ways to pass the time until Susan's next entry:

1. Giggle over fashion disasters in Go Fug Yourself.

2. Get green(er) with eco-tips from Ideal Bite.

3. Create an anagram from your name. For instance, Linda Sue Carrier becomes (heh, heh) "surlier radiance."

4. Coo over The Daily Puppy.

5. See how tech support worked in Medieval times. (You'll have to read subtitles.)

I thought she'd never leave!

Here's hoping Susan is having a food-filled funfest in San Francisco.

She said she was not bringing her laptop, and I believe her. But I wonder...will she be able to resist checking Cancer Banter from a public computer?

I predict she will post an entry or comment...before noon...on Wednesday.

What say the rest of you?

Or are all of you offline until Ninnie Choo Choo's return?

Vacation from Blogging?

Didn't I say that I was going to be taking a "vacation" from blogging?

Just goes to show ya' that this blog isn't an obligation or a chore. It's something that I truly enjoy doing. Writing it helps put things in perspective for me. And reading your comments helps bring that perspective to a whole new level. ("Surrender" and "Petty Woman" are perfect examples of that dynamic.)

NOW, this really is my last post for a few days because I'm not bringing the laptop to SF with me.

We're All Connected

Many of my friends have told me that they start their days reading Cancer Banter. A few have even sheepishly admitted to the "entertainment value" of the blog. Believe me, I'm honored, not offended, when I hear this.

I also like to start my day by checking in on Brad V. Williams, a 46-year-old Texas teacher with Mantle Cell Lymphoma. Like me, he has the nasty blastic variety. We met online when he responded to my post on the mantle cell lymphoma list serve a few months ago. (And, no, the list serve is not a dating service for cancer patients.) Since both of us started Hyper CVAD at around the same time, it's been fascinating to follow his journey and get to know his family. He and his wife Tami and daughter Kati sound like the kind of caring, fun and friendly folks you'd want to invite over to a backyard BBQ.

Just like on my site, the comments can often be as enlightening as the posts. A recent commenter included a few tips from Thomas L. McDermitt's "Daily Survival Kit for Serious Illnesses." Another commenter included a link to a site that listed all ten tips.

I clicked on the site faster than you can say "cure for cancer." I was especially intrigued when I read point nine, "Just for today, perhaps I can take heart that we are all connected." I truly believe that we are all connected and that, as the bumper sticker reminds us, "There are no coincidences."

With this in mind, I shouldn't have been surprised to click on the home page and find that the site, Support 4 Change, is the work of Arlene Harder, an Altadena therapist who lives just a half block away on Boulder Road. When I saw this, you coulda' knocked me over with a catheter.

I first surfed into Arlene's site more than a year ago when I was researching books about "letting go" of our adult children. (I'd also like to write a book on this topic.) Before the New Year, I emailed Arlene and introduced myself. We both agreed that we'd like to meet for coffee but, as another bumper sticker reminds us, s*** happens, and we never made that date.

I'd almost forgotten about her . . . until now. I think it may be time for that cup of coffee.

Cancer Banter on Vacation

I'll be taking a few days off from blogging (and fretting and researching) while I'm in San Francisco from Sunday through Wednesday.

At first, I was reluctant to visit SF because I won't be able to indulge in two of my favorite activities: walking endlessly up and down the hills and through a dozen neighborhoods in a day (a challenge with low hemoglobin) and luxuriating in the communal baths at the Kabuki Japanese Spa (a no-no with the catheter). But nothing's stopping me from putting friends and food on the front burner.

Mary's flying up with me and we'll have brunch with Ed and Anne in Oakland before driving up with Kim to see her work-in-progress renovation in Mill Valley. Then we'll cap it off with a late dinner at the Slanted Door in SF. And that's just Sunday!

I'm also looking forward to seeing some other good buds - Barbara, who's driving in from the Sacramento area, Karen (and maybe Ken) who are taking the BART in to join me for lunch, and Bob, who lives in the city.

Dr. Chang will be calling me with the results of my skin biopsy on Monday, so I think I'll ring my faithful cancer correspondent to see if she can post an update for me.

Until next week!

GREAT News!

According to the CT and PET scans, I'm in complete remission. And the bone marrow biopsy shows no sign of the dreaded myelodysplasia.

We're just waiting to get the results of the skin biopsy from Dr. Chang to figure out if and how the final diagnosis will affect future treatment. I'm now scheduled for a night at Hotel Hope for Cytoxin on Thursday, July 26, right after I get back from a few days in San Francisco.

Hallelujah!

Talk About a Cliff Hanger

After the successful insertion of my Hickman catheter, a nurse called Dr. Forman to confirm that I would be admitted as an inpatient.

I wasn't too surprised to learn that I would not be admitted and would not be receiving my prepatory infusion of Cytoxin. At this point, I can only speculate on the reasons, and, as I hinted in my post this morning, most of them have to do with my inability to be a candidate for an auto (self) stem cell transplant.

I'm scheduled for a blood draw and consultation tomorrow afternoon and will get the next installment on this cliff hanger. And, yes, I'm getting better at living life as a page turner.

Pretty in Polka Dots

I willl soon be the proud owner of a brown polka-dot, empire waisted dress with cap sleeves. As soon as I woke up from my anesthesia-induced stupor, I called the store and asked them to put it on hold for me.

Piper Robert, if you're still serious about buying the dress as a birthday present, I'll send you the bill for $600. It's a good thing it was on sale for 50% off. JUST KIDDING (about the price and the bill)! I don't want to give you AND George simultaneous heart attacks.

Thank you again, dear friends, for all of your supportive, loving comments on the blog, by email and phone.

A Night at Hotel Hope

I'm taking off for Hotel Hope this morning to have my Hickman catheter installed as an outpatient under general anesthesia. I'll be discharged and then readmitted as an inpatient so that I can receive a dose of Cytoxin (CTX) chemo overnight. We're moving forward with the steps for an auto stem cell transplant even though we aren't 100% sure that will be the direction.

I'll be discharged again on Thursday late morning/early afternoon, only to report back later in the day for a blood draw and consultation.

I'm looking forward to Friday, which will be the first day in two weeks in which I haven't had at least one doctor's appointment or test.

On Monday of this week, I picked up the year-old biopsy slides from my former dermatologist. She asked if I could pop in to her office so that she could take a quick look at my skin condition. I could see that she was getting very excited by my skin and then admitted to me, "In a given week in my practice, I see the same 10 conditions. In a given month, I see maybe 20. But this is once in a lifetime." I'm glad I made her day.

Later in that same day, I returned to Dr. Chang's office for a skin biopsy. He couldn't wait to review the slides that I brought with me and immediately excused himself so that he could take a peek under the microscope. He came back and announced, "I disagree with the original diagnosis of granuloma annulare." The plot thickens. He also made arrangements to have the original lab send the "block" of the biopsy (I still don't quite understand this concept) to CoH for another pathology report. Very thorough.

Ooh, look at the time. I gotta' pack!

Petty Woman

Yesterday I treated myself to a visit to one of my favorite clothing boutiques in Pasadena. During their semi-annual 50%-off sale, the prices begin to enter the realm of affordability.

I tried on a feminine, empire-waisted, brown and white polka-dot dress with cap sleeves and a scoop neckline. As I twirled in front of the three-way mirror, I felt, well, pretty. The cap sleeves floated gently over the slack skin on my upper arms but revealed the PICC line on my right arm. No problem, I thought. That's getting yanked out on Wednesday.

But then I remembered that the PICC line is being replaced by a Hickman catheter in my chest. Instead of the two inch plastic tubes that dangle from my arm, the Hickman will feature tubing that's long enough to serve as a Boogie board leash. So much for the feminine scoop neckline. I shimmied out of the dress, waved my apologies to the owner and burst into tears as soon as I hit the sidewalk.

As you're reading this, you're probably thinking what a petty (not pretty) woman I am. After all, the Hickman catheter is a temporary, not a permanent fixture. And with everything else going on, isn't a polka-dot dress a frivolous thing to cry about?

But the tears weren't really about the dress. Just like when I had my hair lopped off, the sobbing was about moving from the theoretical to the concrete world of cancer. That pretty dress mocked me as I twirled.

"Hey, how pretty do you think you're going to look when the catheter is poking out for all the world to see?"

"Those cap sleeves are covering up your hideous upper arms NOW, but at the rate your slack skin disease is spreading, don't you think you need LONG sleeves?"

For the most part, I look healthy. Most of the time, I feel healthy, both mentally and physically. But every once in a while I experience something, like a pretty polka-dot dress, that reminds me in a very concrete way that cancer sucks.

"Pole Dancing" Recap

When I first decided to perform "Pole Dancing" in public, I was full of the kind of swaggering bravado sometimes found among the "seriuosly ill."

"Have you ever done anything like this before?" my husband queried.

"Nope, never done it," I answered.

"Are you sure you want to do this?" he further questioned.

"Yep, I'm sure about it," I assured him.

"It's all about taking personal risks," I boasted. "That's the upside of having a serious illness."

But as the day of "IWOSC Reads Its Own" came closer, the air started to seep out of my puffed up self assuredness.

Yesterday, I had a stomach full of out-of-control butterflies. Today, the creatures were practically choking me. "I can't do this," I cried to George and Cynthia. "If you're sick, you don't have to," they assured me. After all, I was on the record with flu-like symptoms last week and could use the oldest excuse in the book ("I have a tummy ache") to get out of my commitment. And if that didn't work, I could always pull out the ol' cancer card.

On the drive to Dutton's, I still wasn't sure if I was able to follow through. I fretted that my performance would bring shame upon myself, my family and the entire IWOSC organization. (That's the Japanese in me coming out.)

In the end, I forced those butterflies to fly in formation and went on "stage" at the courtyard at Dutton's. Among the crowd were 22 of my Cancer Banter buddies. 17 of us crossed the street to the Early World Cafe for an early dinner after the show.

To my delight, the crowd laughed and cried in all the right places. Everyone said that the pole, borrowed from the Convalescent Aid Society of Pasadena (thanks, Carolyn and Bruce) added a lot, but I forgot to pack my red feather boa.

Paula had suggested that I videotape the reading, but I'm sorry to say that I didn't get my act together to make that happen.

I've been asked to read at the upcoming West Hollywood Book Festival on September 30, and, if I'm not at Hotel Hope having a stem cell transplant, I'll once again pull out the pole (and the boa) for another round of public pole dancing.

What a Difference a Doc Makes

I underwent the CT scan and dreaded bone marrow biopsy (BMB) Friday afternoon. I'd read and heard repeatedly that the skill level of the doctor can make a world of difference in the pain level of the patient during a BMB. I'm here to second that emotion. I only uttered one tiny "ouch" as the bone marrow seeped into the needle. The rest of the speedy procedure was painless.

I should have the results of the BMB next week, along with the pathology reports from the skin biopsies that Dr. Chang will take on Monday. Both of these results could call for a significant change in direction in my treatment plan. If the BMB shows myelodysplasia (abnormality of the bone marrow caused by chemo treatment), I'll need an allo (donor) stem cell instead of an auto (my own stem cells) transplant. It's still uncertain what a confirmation of granulomatous slack skin disease will mean, but Dr. Forman is eager to work with Dr. Chang, and he's already brought on board the CoH specialist on T-Cell Lymphomas. What a team!

Reminder: "Pole Dancing" at Dutton's, Sunday, 2-4 pm

Just a reminder that I'll be reading "Pole Dancing" at the IWOSC Reads Its Own event tomorrow.

WHEN: Sunday, July 15, 2-4 pm

WHERE: The Outdoor Courtyard at Dutton's Bookstore,
11975 San Vicente Blvd., Brentwood

For anyone who's interested, we'll be crossing the street to the New World Cafe for a drink, snack or meal after the reading.

What Grows Around, Comes Around

I made arrangements for five "freecylcers" to come to our house to harvest apricots at 7:30 this morning. Dave showed up with a gift of a half dozen Japanese cucumbers that he grew in his Alhambra community garden.

It was fun to listen to the freecyclers chattering away like fruit-hungry squirrels while they harvested. It turns out that two of them knew each other from previous "transactions."

My cleaning lady asked me yesterday if I still had a hutch that their newly adopted bunny could use, but both our rabbit and his home are long gone. Instead, I posted a request on the San Gabriel Valley freecycle list and immediately heard back from a Pasadena resident eager to get rid of hers. That offer came from none other than Amy, who arrived this morning with her toddler daughter to pick fruit.

I'm off and running now for two appointments at City of Hope - a CT scan and bone marrow biopsy.

Day of Rest

I woke up this morning with nausea, the runs and throwing up yellow bile. I canceled two City of Hope appointments (one a consultation for the Hickman catheter that will be installed next week and one for a CT scan) and then slept for four hours straight.

I'm feeling much better now, just TIRED. It's ironic that the sickest that I've felt has nothing to do with the cancer or the chemo.

I'm a rarer bird than I thought.

During my first appointment with a doctor at the City of Hope, I pointed out the crepe-paper like, wrinkly skin surrounding my arm pits. When she quickly dismissed it as "dry skin," I, quite frankly, wanted to jump from the examining table and down her throat. Instead, I sat calmly, thinking that it didn't take a certification in dermatology to see that this weird, crinkled skin had nothing to do with forgetting to apply enough Jergen's skin cream.

Since that first pre-treatment visit, my skin condition has grown progressively worse, especially on my right arm. I'm so self conscious that I've stopped wearing sleeveless tops, even on the hottest days. I'd rather swelter than sag.

I eventually asked my nurse practitioner if she had ever seen anything like it. She concluded that the sagging, crinkly skin was the result of weight and muscle tone loss. I considered this a totally illogical conclusion because the hyper wrinkles preceded the chemo treatment and a ten-pound weight loss is not enough to account for sagging skin that looks like an aging elephant's.

I finally worked up the courage to show my hideous skin to my current, beloved doctor. His conclusion was no more satisfying. He was certain that the condition was not disease-related and implied that it was the result of aging.

Let's recap here: dry skin, weight loss, aging. I just wanted, at the very least, for a medical professional to acknowledge that my disturbing skin condition was not NORMAL.

I consulted with an Arcadia dermatopathologist this afternoon. (I made the appointment weeks ago, on the recommendation of a stranger I met at Wild Oats - a Whole Foods-like store in Pasadena.) As soon as Dr. Chang took a look at my skin, his eyes lit up. "It looks like granulomatous slack skin syndrome," he pronounced.

"Would you like to see a picture of it?" My condition has a name and a picture? This was all too good to be true. He pulled out his weighty dermatological medical text and flipped to the page describing the slack skin syndrome. Sure enough, the photo looked just like my skin. And, drum roll please, the disease is a type of T-cell lymphoma.

It's no wonder that none of the other medical professionals had a clue about this. According to the medical text, there are just 30 documented cases. (Apparently, a few more cases have been cited since the medical book was written. A quick Google search shows the number at nearly 50 now.) Dr. Chang could barely contain himself. "This is one for the textbooks," he said with glee.

I love his pull-the-pieces-of-the-puzzle-together approach. He wants the year-old slides of the punch biopsy taken by my first dermatologist. The biopsy was taken from what I call the "raised islands" in an area that now sports the wrinkly skin. He also wants copies of the torso photos taken by an ocular surgeon so that he can compare pre- and post-chemo conditions. (I didn't realize it until looking at the doctor's digital photos, but the slack skin has spread to my back torso.) I've made an appointment for him to do a skin biopsy on Monday, July 16.

At this point, I'm not sure how all of this relates to my mantle cell lymphoma (MCL) because MCL is a cancer of the B cells, and the slack skin is a disease of the T cells. I'm just thrilled to finally have a logical explanation and hope for treatment.

(My skin might be a slacker, but I'm not!)

What is Surrender?

A few weeks ago, my visual image of "surrender" was of a Prisoner of War with posture stooped, hands cuffed, head down and face filled with shame and defeat.

I no longer have that same image and wrote the following, inspired by your comments, to reflect my new thoughts on surrender.

What is Surrender?

Head lifted, not bowed
Arms outstretched, not folded
Active, not passive
Acceptance, not resignation
Freedom, not confinement
Letting go, not giving up
Victory, not defeat

Diary of a Bald Housewife

April 17: AAAGGHH! After just one round of chemo, I’m shedding faster than a mutt with mange. In the summer time. In Palm Springs.

April 23: My scalp looks like it’s been mowed by a drunken gardener. With a hand mower. At midnight. I ask for a buzz cut at the City of Hope clip joint. No fans. No paparazzi. And, puh-lease, no mirrors. I’m turning into a first-class diva.

April 24: I hate washing my head. The tiny remaining spikes make me feel like I’m bathing a porcupine.

May 7: I still refuse to look at my naked scalp.

May 14: AAAGGHH! I accidentally catch a glimpse of myself in the bathroom mirror. ET phone home! ET phone home!

May 21: I wear my wig for the first time. A male acquaintance yells out, “I love your hair” as I walk by. I saunter while humming, “There she goes just a walkin’ down the street.”

May 28: AAAGGHH! I catch a glimpse of my image in a plate glass window. I don’t recognize the woman with the bangs and bobbed hair.

June 7: Wig is hot and itchy. I rip it off while driving to CoH. No stares. No silent screams. No collisions.

June 14: I’ve gone two months without plucking eyebrows or shaving legs. I don’t have to yank out annoying, wiry hair on my chinny-chin-chin.

June 17: I wear one of my beautiful modified berets to a party. I’m tres chic, but sweat is pouring down my forehead. I ask Melinda if she would mind if I remove my hat. It’s my “coming out party.” She doesn’t run screaming. I mingle while bald and fear that I’m committing a crime worse than drinking while driving. But, surprise. No stares. No silent screams. No collisions.

June 18, Father’s Day: I wear a scarf to dinner at a crowded restaurant. It’s getting hot and I ask my friends if they mind if I go hairless. They’re thrilled and taunt, “Take it off . . .”

June 29: I look in the mirror and see that my eyebrows look like caterpillars. And that feisty little chin hair has reappeared.

July 3: AAAGGHH! My hair is starting to grow back. But I’m not finished with treatment. If my hair is growing back, does this mean that the cancer's growing back too?

Now You See It, Now You Don't

A lazy Sunday morning with friends in Laguna Beach - no hair, no makeup, no worries.

Surrender?

I've been thinking a lot about a comment that Lisa CK left after my "Keep Kicking" post.

"Don’t confuse surrender with passivity. Passivity does not involve the intentional choice that surrender does."

I've always thought of surrender as a negative action, an admission of defeat. My birth date, August 15, is also the day that the Japanese surrendered, officially ending WWII in the Pacific. Depending on your viewpoint, that surrender was either an intentional choice that no doubt saved the lives of tens of thousands of Japanese soldiers and civilians or it was a shameful admission of defeat.

It's interesting to me that very few Americans know that date, but I'll bet that 90% of Japanese can tell you the significance of August 15. The Japanese women in our San Gabriel neighborhood never forgot my birthday because of its link to V-J Day.

I'm still not sure how I feel about making the conscious choice to surrender and in what circumstances I would consider it a personal victory. But I do know this: the hardest part of surrendering is giving up control, something that, in case you haven't noticed, I'm reluctant to do.

Is it any wonder that when I look back at that live-saving surf episode, I regret not kicking my legs. Participatory kicking would have given me the allusion that I had some control over the situation.

My regret should have been that I didn't ask those two lifeguards, "Is there anything that I can do to help you?" Something tells me that they would have answered, "Just hold on" or "Enjoy the ride." Then I could have surrendered in their arms and remained regret free a quarter century later.

(I'd be interested in hearing your thoughts on surrender. Have you ever surrendered? What were the circumstances? What was the outcome?)

Temperature's Risin' (And so are the blood counts)

My blood counts are on the rise, and none too soon. With record temperatures predicted, I'm planning to cool off in the ocean this weekend.

I'm scheduled for a slew of tests next week, including a bone marrow biopsy next Friday. The BMB results will determine if my bone marrow is functioning normally or if I've developed myelodysplasia (abnormality of the bone marrow), a precursor to leukemia. About 7% of lymphoma patients receiving high-dose chemo will develop this disease. Cancer from chemo? Who knew?

Based on my lousy blood counts and inability to rebound, my doctor is still "concerned" that this is a possibility, but we won't know 'til we get there.

In the meantime, I'm looking forward to that ocean swim.

Pole Dancing in Public: Dutton's Bookstore, July 15

I missed two opportunities to "pole dance" in public in June, but I'll
finally get to brandish my boa at Dutton's Bookstore on Sunday, July 15.

I almost jumped out of my skin when I read the description in the IWOSC
Newsletter: PAST IWOSC PRESIDENT SUSAN CARRIER'S COURAGEOUS
BATTLE WITH LYMPHOMA. I just think the word "courageous" in relation to
cancer is so overused and hackneyed. I'd much rather be described, in life
and in death, as spunky or feisty.

I'm going to request that it be changed to the following: IWOSC past
president Susan Carrier shares "Pole Dancing," a touching and humorous,
first-person essay that explores her love-hate relationship with the IV
pole.

I hope that you'll join me on the 15th, even though theoutdoor venue on a hot,
Sunday afternoon doesn't sound that enticing. Let's come up with a fun, cool
place to meet for dinner after the event.



IWOSC READS ITS OWN
Sunday, July 15
2 to 4 p.m.
Dutton's Bookstore, 11975 San Vicente Blvd. in Brentwood

The drama! The passion! The sheer hilarity! Join an elite group of readers
offering an eclectic mix of fiction, poetry, and essays at another edition of
IWOSC Reads Its Own. Expect a riveting afternoon of eclectic works -- from
poems to true stories to hilarious monologues and beyond.

IWOSC Reads is an entertaining way to support a great group of authors while
enjoying a terrific bookstore.

The afternoon's intriguing line-up includes: a selection from Dee Dee Phelp's
delightful memoir about life as one half of a popular recording duo; an
excerpt from the forthcoming mystery/thriller "The Evangelist," by Darrell
James; PAST IWOSC PRESIDENT SUSAN CARRIER'S COURAGEOUS
BATTLE WITH LYMPHOMA; Susan Lindau's delicious story of "Comfort Food";
and Pam Ward's piece from her recently published novel, "Want Some,
Get Some."

We have moved this event to Dutton's Bookstore, in part to show our support
for this threatened literary landmark. The new owners of the Barry Building,
which has housed Dutton's since 1984, announced tentative plans to demolish
the mid-century modern office complex.  Subsequently, the building has been
nominated as a Los Angeles Historic-Cultural Monument, an action that is still
pending.

Note, please, that this event will be in Dutton's outdoor courtyard on a summer
day.Cool drinks are on the (IWOSC)house.

This event is free and open to the public. Only IWOSC members participate as
readers.

Play to Win

During my Tuesday platelet transfusion, I was surrounded by a chorus of five snoring men in Lazy Boy recliners. So much for settling in for a good chat.

But during my blood draw, I got to meet Russell, a 30-year young leukemia survivor who's just beginning to pack pounds back on his 137 pound, 6'1"frame. If he was a woman, his proportions might be considered super modelesque, but instead he looks like a starvation victim with twig-like limbs and slightly distended belly.

His good humor and healthy appetite are recent phenomena: he admits that he's just emerged from several months of severe depression, when he refused to roll out of bed or touch food to his lips.

I asked him if there was a sudden turning point in his mood or if it was a gradual climb from the depths.

His answer surprised me. "After my [donor] stem cell transplant, I developed severe graft versus host disease of the liver and I still had leukemia. My doctors told me they had never seen these two conditions together and said I had less than a 10% chance of living."

"One day I went in for tests and found out that the leukemia had disappeared. The doctors had no explanation. It was a miracle. From that moment, I was no longer depressed." He rolled out of his metaphorical bed and got down to the business of living, complete with daily practice at CoH's on-campus putting green.

"I still need to get my strength back before I can drive a long shot," he admitted, quickly adding that he was looking forward to playing golf with his sister.

Another patient, a fellow resident at Hope Village, suggested trying out a nine-hole course, but Russell looked as though he had missed the point entirely. "I want to BEAT my sister at the game."

In other words, he plays to win. He doesn't even want to get out on the greens if there's a chance he won't win.

It made me think immediately about our earlier conversation, when he disclosed that his chances of "winning" the game of life were less than 10%. With those odds, he chose not to play. But when the odds suddenly and miraculously improved, he got immediately back into the game with every intention of winning.

Happy Hour at City of Hope

I came this morning for another blood draw and learned that my platelets have risen since Saturday, but they're still at a very low 13,000. That calls for another mid-afternoon Mai Tai here at the City of Hope.

My hemoglobin is at 8.6, up from 7.9 on Saturday. I was offered a red blood cell transfusion if I felt "tired, " but I turned it down flat. Just call me a low hemoglobin overachiever. I went on a 3+ mile walk last night and felt energized, in spite of the sultry heat.

Most disappointing is my white blood cell count. It's rising slowly to 1.9 thousand. Anything below 4,000 puts you in the "be careful" category. I was looking forward to bobbing around on a Boogey board at Santa Monica Beach tomorrow, but I've been given orders to stay out of the water. I think prejudice about the bacteria levels at Santa Monica Beach may be influencing this directive, but OK, OK, I'll stick to the sand. I just won't put my head in it!

Whether you're beaching, BBQing, watching fireworks or just relaxing, have a safe and happy holiday tomorrow.

Keep Kicking

The closest I ever came to gasping my last breath was nearly 25 years ago at Makapu Beach, a favorite body surfing spot in Hawaii.

The pounding surf was gasp inducing, so I wisely (and uncharacteristically) chose to stay on shore and watch George catch waves. But soon the unrelenting sun sent me scurrying into the water to cool off. Before I knew it, a strong current had pulled me far from shore. I was sucked into an area where the waves were breaking on jagged rocks.

I should have swam out beyond the current, but I got the idea that I could ride the waves to the rocks and then pull myself up and out of the water. Instead, I crashed, face first, into the rocks, before the tide pulled me back into the ocean.

After three rides into the rocks, I thought I was a goner. Just then, two lifeguards grabbed hold of me. I remembered that many drowning victims attempt to fight their rescuers, so I immediately relaxed into their strong arms.

They worked very hard to pull me through the crashing waves and strong current. When I emerged from the ocean, George was waiting and rushed me to the emergency room for six stitches by my right eyebrow.

All ended well, but to this day, I feel a little guilty for not doing more to ease the burden of those lifeguards. A little flutter here, a kick there may have made their jobs easier. I wasn’t fighting them, but I wasn’t helping them either.

Fast forward a quarter of a century. I’m receiving care at one of the country’s top cancer centers with one of the most respected hematology doctors in the country. Believe me, it would be very tempting to relax into the strong, capable arms of the brilliant and compassionate staff at City of Hope.

But I don’t want to one day rue my passivity and think, “I could have done more, a gentle kick here a flutter there.” (If George was reading this, he would probably say that there’s no danger of my ever becoming passive.)

So how does a patient (or a drowning victim) find that happy balance between passivity and fighting the rescuer? I stay active on a list serve for mantle cell lymphoma patients, a group of decidedly non-passive cellmates. The group stays current and questions extensively. I research everything exhaustively. I do my best to question and communicate with my doctor. And I plan to keep on kicking for the long term.

Personal Best, Personal Worst

I continue to feel energetic and stay active. In fact, I'd say that my energy level could rate a personal best.

Since my Thursday afternoon visit at CoH, I've buzzed about non-stop with preparations for the baby shower I hosted on Saturday, enjoyed a long lunch with drop-in friends at The Taco Spot, and scored at a clothing swap party on Friday night. I rose early on Saturday to put the finishing touches on the baby shower. The last guests left the party at nearly 4 pm, giving me just enough time to make it to CoH for my 4:30 blood draw appointment.

Mai Tais and Bloody Mary's
To my surprise, my blood counts had reached an all-time low - a personal worst for me. I was especially stunned to learn that my hemoglobin had dipped to a dire 7.9. I had spent the morning rushing up and down stairs and scurrying about, and didn't once feel winded or tired.

The platelet count came in at a dangerously low 5,000. To put this in perspective, my pre-chemo count was 250,000; low normal is 150,000 and my previous low was 13,000.

It's no wonder that I was having nose bleeds, was covered in bruises and sported the tell-tale red-dot rash, a sign of internal hemorrhaging. A tiny itch on the leg resulted in spots of blood the size of silver dollar pancakes on my slacks. I woke up on Saturday morning with my T-shirt drizzled in blood from a small scratch on my neck.

If my blood counts took this kind of pummelling after a chemo round with "pulled punches" (lower intensity, shorter duration), I shudder to think what would have happened if I had taken the full punch.

But I didn't stay down for the count. After knocking back a bag of mai tais (platelets) and bloody Mary's (red blood cells), my counts climbed out of the danger zone

A Night in the ER
Saturday appointments at CoH are handled in the Evaluation and Treatment Center (ETC). Instead of the convivial, pull-up-a-Lazy Boy atmosphere of the transfusion room, I sat isolated in my own glass-partitioned cubicle.

I can see why they do this. The other patients are just a little, well, scary. I took a pole stroll to the restroom and passed one of my fellow inmates, a young man wearing a hoodie pulled up over his head. His eyes were sunken and his skin was a translucent, bluish white. The words "ghostly pallor" came immediately to mind.

The EMC staff are professional and attentive, but unusually playful. Disco was their music of choice for the evening. When a new tune came up, we took turns shouting out the artist. "Sylvester!" "Abba!" "Village Boys, err People!" "Gloria Gaynor!" We all pleaded with Nurse George, whose biggest regret is that he was too young to experience the Studio 54 phenomenon, to show us a few of his disco steps. Next time I'll bring my feather boas.

Between the entertaining staff and a good book, the five+ hours went quickly. Not the way I would ordinarily choose to spend a Saturday night, but I'm grateful that Dr. Forman had the foresight to book a weekend appointment so that I could pull my counts out of the toilet.