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."

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.

Squeezing out those cells!

Susan phoned in Monday's numbers: a small, but scrappy .11 million cells to add to the 1.7 million currently on ice.

Dr. Wang confirmed that Susan will be at COH every afternoon this week to reach the two million minimum. (Actually, two million and a dab more.) (Yes, "dab" is a medical term. It's slightly larger than a "smidgen." Ask any medical student. Or just watch "Scrubs.")

"So, Smooky…" I asked. "Isn't there an oncology version of Miracle-Gro they can sprinkle on the harvested cells to encourage them multiply on their own?"

Alas, no!

Still in the Stem Cell Game

My stubborn stem cells are slowly but surely leaving the comfort of my bone marrow. I think they heard a rumor that they'd be put on ice and, like me, don't like the notion of being cold and out of commission.

The good news is that the doctors have lowered the collection bar from an optimum of 5 million to a minimum of 2 million. The more stem cells the better for a quick and easy engrafting after the transplant, but 2 million can get the job done.

I'm now up to 1.32 million and can collect for three more days. (The mobilizing drug is limited to a six-day collection time frame.) I harvested .28 million on Monday and took just a slight dip to .22 million on Tuesday. If I (with the help of AMD 3100 and Neupogen) can continue to coax the stem cells out at this rate, we'll have that 2 million in the bank by Saturday.

(PS My laptop will be in the shop for several more days, so I'm posting this from the City of Hope.)

Playing the numbers

Well, crap!

Susan just called from CoH to say yesterday's harvest resulted in a puny .28 million tally. This, after she gave herself all those shots! The first harvest after the booster drugs is supposed to net a bumper crop of stem cells.

She'll be in harvest mode today and tomorrow at least. She has .8 million cells on ice (they keep, unlike some of the UFO's in my freezer), and she needs a cool 5 million to get the job done. It may take her a month or two, but it's doable.

Really, really, really frustrating, but doable.

Bro, I think we're ready for the "spanking story" any time now!

The Right Size Bag for the Right Size Job

I worked my first job as a cashier at Cope Super Market in Ravenswood, West Virginia, decades before the "paper or plastic" era. In 1971, brown paper bags came in five standard sizes to accommodate everything from a piece of Bazooka bubble gum to a 25-pound turkey.

One of the first lessons I learned from the co-owner, Garland Cope, was, "Use the right size bag for the right size job." I was a penny-pinching high school student, but I couldn't understand why Mr. Cope, one of the richest men in town, zealously adhered to this mandate. If he witnessed one of his cashiers using an inappropriately sized bag, he would leap from his office perch and select and substitute the proper brown bag. (This only had to happen once before I learned the lesson.)

A few years later, in my early 20's, I began to understand that Mr. Cope's obsession transcended dollars and cents. I applied the lesson of using the right tool for the right job to my first elementary school teaching job. Some kids needed a whisper; others required a stern voice. Don't ever confuse who needs what.

Mr. Cope's maxim has served me equally well over the years through a mixed bag of careers: teaching, marketing, parenting and freelance writing and editing.

When I began to explore my treatment options for Mantle Cell Lymphoma (MCL), I could once again hear Mr. Cope's admonishment crackling in my ears: "Use the right size bag for the right size job."

Was Rituxin + CHOP (R-CHOP), a chemo protocol that had become the gold standard for MCL, the right bag? Would going for the more aggressive, intense approach - Rituxin + Hyper CVAD + Stem Cell Transplant - be like putting a piece of bubble gum into a turkey-size bag?

In my case, it became relatively easy to choose the right bag. Not only did the world-renowned Dr. Stephen Forman at the City of Hope make a case for Hyper CVAD, but MD Anderson Cancer Center agreed. MD Anderson also revealed that my cells are of the "blastic variety." There are three subsets of cells associated with MCL, and blastic is what you DON'T want your cells (or your children) to be. They're stubborn, aggressive and treatment resistant. At one time, in the not too distant past, this diagnosis was a death sentence.

But MD Anderson quickly countered the bad news with some good news. My written second opinion included the results of a 2006 MD Anderson study that announced that MCL patients with blastic variety cells have had excellent outcomes with the Hyper CVAD protocol.

R-CHOP would have been like taking a pop gun to a charging rhino. Or, to put it into Mr. Cope's vernacular, like trying to stuff a 25-pound turkey into a penny bag. Hyper CVAD + Stem Cell Transplant, on the other hand, appears to be the "right size bag for the right size job."

I think Mr. Cope (who passed away in 2006) would have been pleased with my decision.

(Do any of you have a Mr. Cope in your life who taught you a life-long lesson at an early stage of your work life? Please share in comments.)

Cover Girl

Have you seen the Newsweek cover story written by mantle cell 
lymphoma survivor Jonathan Alter?


After a friend sent me the link, I tore into the page-turner of a story 
with the same vigor that I used to rip into the delivery pizza two nights ago. 
Engaging style. Fascinating content. Good use of tension.

And then it hit me. This wasn't just Alter'sstory; it was mine. Yes, every 
cancer patient's story is unique, as Alter out, but the similarities go 
way beyond the fact that we both have the same rare form of cancer. As writers, 
we both approached the diagnosis in the same ferocious way of researching, second
guessing and escalating.  We both were lucky enough to have connections to get
immediate appointments at a top-rated cancer center. We both turned to blogging for
support. He endured an autollogous stem cell transplant as I likely will. 

After three pages, I couldn't keep reading. I sobbed. I hyperventilated. I cursed. I didn't
want this to be my story.

But it is my story. I took a break, gathered the mail and opened cards. I came back and 
finished reading because I want my story to end just like Alter's - filled with hope and
optimism.  I especially needed to be reminded of the quote from Shawshank Redemption
(one of my favorite movies): "You can get busy living, or get busy dying."

For both Altler and me, it's no contest.

Surprise, Surprise, Surprise

A funny thing happened on the way to the oncologist. Not funny as in "ha ha" or an evening at The Ice House or lunch with Paula, but funny as in surprising and unexpected.

I expected to start an 8.5 hour infusion of R-CHOP at 10 am today. I came prepared with my chemo companions, Cindy and Andrew, my Apple I-Book, a collection of DVDs, books and magazines. Cindy and Andrew had planned to read "The Notebook" to me during the infusion. (How clever I thought I was - providing entertainment for myself while getting my book-avoiding daughter to READ.)

But the books, magazines, DVDs and laptop were untouched. At 10:30 am, I learned that my chemo was cancelled. Before you start uncorking champagne bottles, let me explain. After closer examination of my PET scans, CT scans and recent MRI results, the team, led by the illustrious Dr. Stephen Forman, concluded that I need a more aggressive approach for my very aggressive mantle cell lymphoma (MCL).

They are recommending Hyper CVAD, a protocol that's highly toxic but highly effective. It requires that I check in to the City of Hope for four to five days of treatment, check out for two weeks and then repeat the process for a total of eight cycles. That adds up to about six months of my life filled with just one agenda item in my calendar: GET WELL.

The team is also recommending a stem cell transplant procedure immediately after the completion of Hyper CVAD, a process that requires a one-month hospital stay.

I had just come to terms with the effect that R-CHOP would have on my life and my calendar. But now I'm trying to wrap my brain around this concept of seven months of intensive treatment. At the moment, I'm in hyper research mode, reading everything I can find about Hyper CVAD and stem cell transplants. I'm also scouring the archives of the mantle cell lymphoma list serve for any mention of these two procedures and the patients' reactions. So far, a number of the "younger" (less than 60 years) patients have opted for this combo and have had overwhelmingly positive results.

I may fly to the MD Anderson Cancer Center in Houston, Texas, for a second opinion, but time is short. I'm scheduled to start treatment at CofH on March 26 and the doctors are uncomfortable with my putting off treatment any later than this. (I tried for mid-April, but I got the "What part of aggressive don't you understand" reaction.)

I'm in a bit of a daze. How can this insidious cancer be so aggressive when I feel so good?