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.