Oh, Jackie O

My friend Lisa recently informed me that actor Gene Wilder developed and recovered from non-Hodgkins lymphoma. Her source? Wikipedia. I was so busy researching some of the top cancer websites that I completely neglected to check out this oft-maligned site.

So I went to the site banned by the history department of Middlebury College and checked out other notable members of the non-Hodgkins lymphoma club:

• Jacqueline Kennedy Onassis, widow of former U.S. president John F. Kennedy
• Tim Tobias, jazz pianist
• Gene Wilder, diagnosed in 1999, made a full recovery in 2000.
• U.S. Senator Paul Tsongas
• Hussein of Jordan, former king of Jordan
• British soap opera star Anne Kirkbride
• Velvet Underground guitar player Sterling Morrison
• The former Shah Mohammed Reza Pahlevi of Iran (although this was probably chronic lymphocytic leukemia).
• Australian opera and musical theatre star Anthony Warlow
• U.S. Nobel Prize laureate Jack S. Kilby, inventor of the integrated circuit
• Croatian basketball player, coach, and diplomat Krešimir Ćosić
• Saku Koivu, NHL star, captain of the Montreal Canadiens.
• British politician Menzies Campbell
• American political commentator and movie critic Steve Sailer, diagnosed with Stage IV NHL in 1997, made a full recovery after getting into a clinical trial, and has been cancer-free ever since.
• Ernie Johnson Jr., American sports broadcaster for TNT and TBS.
• Andres Galarraga, MLB first baseman.
• Joey Ramone, lead singer for The Ramones.
• Saul Bass, American graphic designer.
• Scott Rentrop, professional stuntman of Louisiana
• Jon Lester, Boston Red Sox pitcher
• David Rocastle, English footballer
• Cesar Castillo, American Actor
• John Hartford, American country / bluegrass composer and musician. Died June 4, 2001; after long battle with NHL.
• Mike Tetrault, blues musician

I like being in company with Jackie O, but her choices are not the choices I plan and likely not the choices she would make if she was diagnosed in 2004 instead of 1994. According to Cokie Roberts' book "Founding Mothers," Ms. Onassis decided to start eating desserts after her NHL diagnosis. And according to a NY Times article, "An Onassis Legacy: Facing Death on One's Own Terms," Ms. Onassis refused treatment that could have prolonged her life.

I respect her choice, but I'm grateful to be a member of a different club. In 2007, we "cellmates" have lots of treatment choices and healthy optimism for a full recovery.

And the Envelope, Please

The Oscar-nominated stars have nothing on me. Stars endure weeks of anticipation from nomination until announcement of winners. I've hung in for weeks between initial diagnosis (mantle cell lymphoma), test results and treatment recommendation. I wish that I could say that it's an honor just to be nominated for this disease. I am, however, in very good company of other stellar human beings who've received a point from the fickle finger of fate.

I went yesterday for the dreaded bone marrow biopsy, which will determine if the lymphoma has spread to the bone marrow. On Thursday, I go in for the final test, the spinal tap, which will show if the lymphoma has entered the central nervous system.

I start chemotherapy on Monday, March 12. (The doctors wanted me to start on March 5, but I didn't want to miss Paula's debut at The Ice House.) The regimen is called R-CHOP, a combination that's proven very successful in treatment of both mantle cell and follicular lymphoma. The C, H and O stand for various cancer-fighting chemicals, the P is for a steroid that's taken post infusion. The R stands for Rituximab, one of the latest new cancer fighting drugs. I like to call it a smart drug because unlike chemo drugs, which attack, the good and the bad cells, Rituximab zeroes in on the proteins of the bad cells.

And, to return to the Oscar analogy, I wish that there was just one "envelope" announcing the results and the treatment, but my life will temporarily be a series of mysterious envelopes.

Tests, Tests, and More Tests

For the uninitiated, here's a brief description of the preparation required for the tests I've been enduring over the last two weeks:

CT SCAN: Preparation includes ingesting a quart of bromide cocktail from 6:30 am until an hour before the scan. I recommend serving the RediCat berry bromide chilled in a martini glass. But skip the olive. Feather boa and candy cigarettes are optional. This one was easy.

PET SCAN: Preparation includes calling the airline for a special meal because we're flying back from Hawaii and I can only eat protein and broccoli after 5 pm the night before the procedure. The Atavan knocked me out cold and I don't remember a thing.

BONE MARROW BIOPSY: Preparation includes reading posts on the mantle celll lymphoma listserve, calling the doctor to request Atavan and Demerol, calling my friend Melanie (a nurse in the bone marrow transplant department) for more information and encouragement, hyperventilating while trying to visualize the process, and talking endlessly about my anxiety levels to my husband George and daughter Cindy.

SPINAL TAP: This is also known as lumbar puncture, but the word "puncture" makes my head light. Preparation is pretty much the same as for the bone marrow biopsy above. The test is Thursday, February 29, so I'll report later on the results.

The Cancer Queen of Comedy

Humor remains my favorite way of dealing with this disease, and my friend Paula has emerged as the cancer queen of comedy. She's just finishing up an eight-week comedy class (purchased at a Hillsides silent auction) and has been workshopping her bit about me and my cancer. In spite of the naysayers, who say to avoid cancer like the "n" word, Paula's cancer bit gets big laughs.

Paula and her comedy class will make their debuts on Monday, March 5, at 8:00 pm at The Ice House at 24 N. Mentor Ave. in Pasadena. Only Paula can use the words "friend," "cancer," and "bitch" in the same sentence and leave you gasping for air. She's also figured out how to connect Nordstrom's and the City of Hope. By the way, she's the one who came up with the term "lymphomaniac" on one of her comments on this blog. That one's sure to make it on the NY Times list of buzz words for 2007.

Let me know if you'd like to join me and other friends at The Ice House on Monday.

There is Always Hope

I received recommendations for oncologists from my GP and my two ocular surgeons. My surgeon's nurse, however, gave the best recommendation. "Dr. Forman at City of Hope. He's the head of the hemetology department," she whispered when the doctor was out of earshot.

Even before Lisa's covert recommendation, City of Hope had popped instantly into my mind. It could be because of those "Canswer" billboards that line the 210 freeway. (Kudos to the marketing wizard who came up with that!) It could be because "City of Hope" includes that magical word, hope. And it could be because so many friends I know, respect and care about have connections with the City of Hope as employees or patients.

The first call I made was to my friend Anne, a former "big cheese" at City of Hope. She was instantly encouraging about the level of care I would receive at CofH, the caliber of the doctors and staff and the many advances cancer research has made in the last decade. And who did she recommend? Dr. Forman. She got on the phone and made a referral for me and sped up the intake process. Within two hours, I received a call from the scheduler and the intake nurse.

And every time I visit the hospital, I'm reminded by a large sign near the entrance, "There is always hope."

The Eye Has It

The first question most people ask is, "How did you find out you have cancer?"

Last fall, I started noticing that I had a droopy right eye. My concerns were purely aesthetic. I knew that "droopy eyes" are a hallmark of aging, but I couldn't understand why I was aging asymetrically. Sometimes, when I got bored at long stop lights, I whipped out my cell phone and took self-portraits. The portraits confirmed what the mirror had suggested: I had a droopy right eye.

I didn't think too much more about it until my annual physical in early January. The droopy eye was just one of about six vague complaints (torso rash, fatigue, gimp right knee, etc.) I reported to Dr. Blanco, my GP. As I rattled off the complaint, she fired back with a recommendation for a specialist, including a neurologist for the droopy eye.

My 17-year-old daughter was especially alarmed at this recommendation. "Mom, no. You don't need a neurologist. There's something growing in there." She took more pictures from different angles so that I could see the growth. She guided my hand over the mass and asked me to describe what I felt. She even pulled back my eyelid so that I could see what an opthamologist later referred to as an "encapsulated mass." For the first time in my life, I was happy to have an "in-your-face" kind of daughter.

The next day, I called back Dr. Blanco to report my new observations. "You're right. Let me refer you to an opthamologist," she said.

A week later I played a rousing round of "Stump the Ophthamologist." Ophtamologist number one looked at my encapsulated mass and declared that he'd never before seen anything like it. He called in his partner, who, according to an article in the waiting room, had served in WWII. That means that he's likely been practicing medicine for more than half a century. "Nope. Never seen anything like it," he agreed. "Oh, great," I thought. "A century of practice and I've stumped 'em."

From there, I consulted with two ocular surgeons. "It could be nothing or it could be something serious," they both concluded. I agreed to have a biopsy done under general anasthesia.

I met with Dr. Davidson, my ocular surgeon, on January 27, 2007, to discuss the pathology report. He said, "Well it's not the WORST news possible. You have lymphoma, a cancer of the lymphatic system."

I didn't ask him what the WORST news could have been.

Let's Banter About . . . Cancer

After I first discovered I had cancer - mantle cell lymphoma to be exact - several of my writer friends asked, "Are you going to write about this?"

"Hell, no!" I responded. I figured that the subjects of cancer and "my cancer journey" had pretty much been played out in newspapers, magazines, after-school TV specials, tear-jerker movies and, most recently, in blogs. I didn't think the world needed another excruciating account of the highs and lows, friends and foes or delights and woes of battling cancer.

It's as though the blog was invented by and for cancer patients. Type in the words "cancer" and "blog," and you'll receive more than 32,000,000 hits. Try "mom" and "blog," and you'll receive less than 20,000,000 hits. That surprised me. I thought for sure there would be more moms writing about the agony and ecstasy of childbirth and child rearing than people kvetching about cancer. Enter "liberal democrat" (another group of which I'm a member) and "blog", and the number of hits shrinks to just over a million.

I guess it would be easier to make a case for a liberal democrat blog than for yet another cancer blog. But, unlike the freelance stories that I pitch, this blog isn't about "filling a need" in the market place. It's about filling my own need to share what's euphemistically called a "journey" and a "ride."