Coming to You from the City of Hope

I had a blood draw and consultation with Dr. Forman today. My white and red blood cells are respectable, but my platelets are still low, so I'm waiting to have a transfusion. Since the stuff looks suspiciously like a mai tai, I'll just pretend that I'm at the Moana Bar in Waikiki getting my favorite vacation drink through an IV. But I do miss the sugar cane and the little umbrella. Not to mention the sunset, but that's what imaginations are for.

I have access to a computer while I'm waiting, so this post and the "chemo brain" post come to you directly from the City of Hope.

I Have Chemo Brain. What's Your Excuse?

For years, chemo patients have been told that "chemo brain," the phenomenon of chemo-induced fuzzy thinking, was "all in their heads."

Sunday's NY Times Article, Chemotherapy Fog Is No Longer Ignored as Illusion, debunked the "chemo brain, schemo brain" myth while clearly striking a chord in the chemo community. It became the number one most emailed article as, no doubt, cancer patients and survivors forwarded it to family and friends with a note that read, "SEE, I TOLD YOU SO!"

The article cites examples from a breast cancer discussion board thread, "Where's my remote?" In addition to misplacing the remote, women 'fess up to losing credit and ATM cards, digital cameras, sunglasses and even an artificial breast. Attempts at double tasking fail miserably. One woman shares a story about coming home from work and finding the iron in the freezer and the melted Baskin Robbins container in the cabinet. Another woman reminisces about pouring gravy into the water glasses at a dinner party. God forbid that the doorbell should ring while a chemo head is on the phone.

But what happens when you have the symptoms of "chemo brain" before a drop of the cancer-killing stuff courses through your veins?

I have been known to leave my ATM card in the Wells Fargo drive-through machine more than once. A quarter of a century ago, a week before George and I decided to run off and get married in Hawaii, I wore my slippers to work. I also drove my car to the local mini mart and then walked home, forgetting my car in the parking lot.

I actually seem to be doing better on chemo because I've become a slothful single tasker. In the old days, I would have dismissed myself as a "plodder," one of the worst pejoratives I could have used. My double tasking attempts are now limited to talking while driving the car, and that, as in pre-chemo days, continues to go poorly.

What about you? Are you ever guilty of "chemo brain" without the chemo? I've told all (well, at least some); now it's YOUR turn.

I'll have a side of fatigue with that chemo.

After my doctors at City of Hope first recommended the Hyper CVAD protocol, they immediately cautioned, "You'll need to quit your job." I was led to believe that the side effects of this dose-intense chemo would be so debilitating that the most I could expect to do was watch "I Love Lucy" reruns while eating rice gruel.

Imagine my delight when I sailed through Round 1 (Course A) with few side effects. Best of all, I had the ability to lead a full life during my two-week home pass. I drove myself to doctor's appointments, shopped, ran errands, made dinners, met friends for lunch and brunch, did laundry and kept the house picked up, went to several dinner parties and a Dodger game, attended a Japanese cooking class, did Pilates classes on Tuesdays and Thursdays and yoga on Saturday, walked regularly, gardened, completed some work for my former employer, attended two writers meetings, helped out at a Hillside's event, paid bills, did a lot of reading and writing and, occasionally, took a nap. I know this sounds like a lot, but I felt like I was doing a good job of pacing, not pushing, myself.

I didn't fare as well after Round 2 (Course B). I checked out of Hotel Hope on Sunday and had difficulty pulling myself out of bed on Monday to take Cindy to school and make it to the CofH by 8:45 for my blood draw and shot of Neulasta (to increase white blood cell counts). (George usually takes Cindy to school now, but since her school is on the way to CoH, I took over that morning.) By the time I got home, it was nearly noon, and I gave myself the rest of the day off.

On Tuesday morning, I felt a little better, but was disappointed that I couldn't rally to attend my 9 am Pilates class at the Pasadena YWCA. That evening, I managed to make dinner and took Cindy to her confirmation class. I noticed that I felt winded while puttering around the kitchen and that my heart rate shot up after I walked up a flight of stairs.

I feared that I wouldn't be able to pull myself out of bed again on Wednesday and rescheduled breakfast with a friend. I managed to take Betty to her grooming appointment, picked up the house and did laundry, but it took a toll. After I walked from the basement laundry room to the second floor, my pulse jumped from 60 to 120. I took a quick nap before my friend Ellen arrived that afternoon from Colorado.

I was so happy to see her that I felt my energy surge. We walked two and a half blocks downhill to our swim club. But I was a "big bad wolf," huffing and puffing for the entire two-flight stair climb and 2.5 block uphill return trip home. Again, I needed a nap to recover.

But, once again, I bounced back and we had dinner out.

By Thursday morning, I felt that I had completely recovered. I picked up Ellen at her hotel in Old Pasadena so that we both could attend the 9 am Pilates class. The teacher was out ill, but we took a short walk and then did our own workouts. I stretched while Ellen did an energetic NIA dance routine. When KC and the Sunshine Band started blaring, I jumped up and improvised a high-energy, 7-minute dance routine. After all, who can resist "Shake, Shake, Shake" and "Get Down Tonight"?

I dropped Ellen off at her hotel, came home to shower, and then picked her up for lunch out and appointments at the CoH. When I missed the exit and then got lost on the way to lunch, I blamed "chemo brain," but I knew full well that I was like this before a single drop of chemo surged through my veins.

I was still feeling full of energy when we arrived for my 1 pm blood draw at the CofH. As I mentioned yesterday, I fully expected to learn that my blood counts (red blood cell, white blood cell, hemoglobin, platelets, etc.) had soared through the roof.

I was shocked to find out that all my counts were in the toilet, and Dr. Forman was even more shocked to learn of my activity level.

Now it's time for a chemo side effects refresher. The chemo is designed to attack those nasty, fast-growing, blastic-variety Mantle Cell Lymphoma cancer cells. It is doing an excellent job at this, but, at the same time, is indiscriminately attacking other fast-growing cells. The attack started with the hair follicles and then moved on to the skin cells (my skin is full of unhealed sores) and every component of the blood cells.

When my white cell count drops, I'm especially vulnerable to infections. A drop in red blood cells causes anemia and assoicated fatigue and irritability. The drop in hemoglobin (a component of red blood cells) explains the shortness of breath and elevated heart rate. (I had to review how the hemoglobin - the oxygen and CO2 carriers of the blood - tie in with the heart and lungs of the circulatory system.) A fall in platelet count is worrisome because these yellow components are responsible for blood clotting.

My white cell count should recover soon because of the Neulasta shot on Monday, but my low hemoglobin and platelet counts called for that Thursday afternoon blood transfusion.

Again, I don't understand why I felt so good on Thursday in spite of the low counts. I compare it to my "fearless" attitude when it comes to people and places. I'm missing that piece of DNA that makes others naturally suspicious. Over time, my brain, not my gut, has learned to pick up on danger signals, but it doesn't come naturally and sometimes may miss a beat. For example, many of the female tenants in our Old Pasadena office building felt threatened because a homeless man had taken up residence in the fenced dumpster area of our parking lot. Some reported him to the landlord, but I felt he was harmless and covertly left blankets by the dumpster.

If my gut and my body don't naturally tell me to SLOW DOWN, I'll have to rely on other signals, such as lab results, pulse rates and help from family and friends.

Last week I reread a 2003 Time story about West Virginia war "hero" Jessica Lynch. I particularly liked this quote: "When it's all over," says her father Greg Lynch, "she'll just be an old country girl"—the label a shorthand for the virtues that matter, like kindness and toughness.

I feel the same way about this chemo process. When it's all over, I'll still be a kind and tough country girl, but I just have to make sure that the same tough quality that will get me through doesn't kill me in the process.

A Spoonful of Atavan Helps the Medicine Go Down

Most of you know that I've completed two of eight rounds of Rituximab + Hyper CVAD. I haven't mentioned that the protocol consists of alternating courses of "A" and "B." For my friends who are addicted to "Discovery Health," ER and every medical show on TV (you know who you are), I'm going to do something uncharacteristic and list the drugs in each course. If this level of detail makes your eyes glaze over, simply skip this post.

Course A is as follows:

* Rituximab (aka Rituxan, a monoconal antibody) at 375 mg/m2 on day 1 of each cycle
* Cyclophosphamide at 300 mg/m2 IV over 3 hours every 12 hours for 6 doses on days 1, 2, and 3
* Methotrexate at 12 mg IT on day 2
* Doxorubicin at 40 mg/m2 IV on day 4
* Vincristine at 2 mg IV on days 4 and 11
* Dexamethasone (steroid) at 40 mg/d PO/IV on days 1-4 and 11-14
* Cytarabine at 70 mg IT on day 7

Course B is as follows:

* Rituximab at 375 mg/m2 on day 1 of each cycle
* Methotrexate at 1000 mg/m2 IV over 24 hours on day 1
* Leucovorin at 25 mg/m2 IV, 24 hours after the completion of the methotrexate infusion, every 6 hours for 6 doses
* Sodium bicarbonate at 600 mg PO (starting day before methotrexate) 3 times day for 4 days
* Cytarabine at 3 mg/m2 IV over 2 hours every 12 hours for 4 doses on days 2 and 4

This listing doesn't include the "pre-meds," such as Benadryl, which is administered as a drip prior to receiving Rituximab, or any of the anti-nausea medictions, such as Atavan. All of these, by the way, send me straight to slumber land.

Dr. Forman and I have both come to the same conclusion: Course "B" has been much tougher on my body than Course "A."

Transfusion Confusion

I've taken a few days off from blogging because it's been an eventful week. I finally took Betty in for a much-needed grooming. My friend Ellen visited from Boulder, Colorado. And a routine visit to the CoH (blood draw and consultation) turned into an extra 4.5 hour blood transfusion of hemoglobin and platelets.

Why the transfusion conffusion? I was feeling so energetic on Thursday that I expected to learn that my blood levels were soaring. Instead, I found out that all of my blood counts (white blood cells, red blood cells, hemoglobin, platelets,etc.) were in the toilet.

I promise to write more tomorrow about what I've experienced and what I've learned.

Minimize, Maximize, Equalize

I've often heard that the worst thing to do to a person with a serious illness is to "minimize" the disease or the emotions associated with coping with it.

I'm happy to report that this has not been the case for me. As a matter of fact, if anything, my friends have been guilty of "maximizing" the issue. After I returned from "round one" at City of Hope, I was surprised at how often friends pulled their punches when describing their problems and issues. I often heard an apologetic, "I shouldn't even be sharing this with you because it pales compared to what you're going through" or "I don't want to stress you out, but. . ."

The most extreme case of minimizing personal problems and maximizing mine came from a woman who was on my GirlTalk committee at the Pasadena YWCA. She called to discuss moving forward on an idea for promoting an anti-bullying program. I asked her to call the Y's executive director and went on to explain my health circumstances.

She began to share with me her own personal health challenges, but stopped herself midstream and offered an apology for "burdening" me while I was going through something so serious. As it turned out, she was recovering from a long bout with meningitis. I was grateful that I knew something about the serious challenges of this disease because my friend Tara, who had just visited from Virginia, went through a year from hell with meningitis.

But, in spite of the very serious challenges and fears, in some ways, my friend Tara had it lucky. She had a husband to support her financially, emotionally and physically. My Y friend is a single mom, so she had no choice but to continue working through severe pain and emotional agony during the worst of her meningitis. And she was (and is) alone in the rigors of raising a pre-teen daughter. Worst of all, doctors were guilty of minimizing her illness, assuming it couldn't be that bad if she was getting up and going to work every day. She still suffers daily with chronic pain and sleepless nights and cannot find relief from pain medications.

I felt humbled because I know this woman is a conscientious employee and devoted mother. And yet she was still making time to pursue an issue she felt passionate about.

Another friend, who is good about checking in for a chat every week, apologetically described her stressful week, which included bullying in her workplace, a trip to the emergency room and the sudden, accidental death of a neighbor. By comparison, my stress-free week at home was like a mini vacation.

But comparison is where we get into the most trouble. Not when we have the "aha" moments and realize that we don’t have it so bad compared to millions of others with worse problems and struggles. The trouble comes when we compare and come to the conclusion that OUR problems are worse.

I was guilty of doing exactly that while reading Cancer Vixen, a brilliant graphic memoir by Marisa Acocella Marchetto, a cartoonist whose work has appeared in the New Yorker and the New York Times. She’s a self-described "shoe-crazy, lipstick-obsessed, wine-swilling, pasta-slurping, fashion-fanatic, single-forever, about-to-get-married big-city girl cartoonist with a fabulous life" who finds out she has a lump in her breast.

I couldn’t turn the pages fast enough as I laughed and cried through Marisa’s graphic depiction of her life.

And then three quarters of the way through the book, I found out that Marisa’s breast cancer was localized, stage one. I actually put the book down and thought, “All of this drama over stage one?”

And then I immediately had to deal with the guilt of copping a judgmental attitude about someone else’s very real struggles and emotions. Those have nothing to do with the size of the lump or the staging of the cancer.

When we compare and come to the conclusion that our problems are worse, we leave ourselves wide open for a pity party. Worse yet, we loose the ability to empathize and connect with others. And that's what makes life worth living.

Please keep on sharing with me stories about your challenging children, your frustrating husbands, your bout with the flu, your crazy-making clients and editors, your unrequited loves, your unfulfilling jobs, your disobedient dogs or WHATEVER else is frustrating or challenging you. And do it without apology! I promise that I won't minimize, maximize or compare with my own life.

Bald is Beautiful?

It's easy to make a case for "bald is beautiful." Think Yul Brynnar. Telly Savalas. The Deltan aliens from Star Trek. Sinead O'Connor. My dad, who lost his hair shortly after I was born. Just don't think about Britney Spears.

It's tougher to make the case when it's your own head.

After my follow-up visit at City of Hope this morning, I walked over to the Image Center, a combination boutique and clip joint. I was tired of my unmanicured tresses, a hodgepodge of bald patches and thinning locks that looked like a lawn cut by a drunken gardener.

I thought about inviting friends to the "clipping ceremony" and documenting the event with photos, but, ultimately, I decided on a private affair and no cameras. The clip room was surrounded by mirrors, so I asked the "stylist" to spin me around so that I couldn't see my reflection. I closed my eyes as she sheared the remaining strands of hair from my itchy scalp.

When she was finished, I was still afraid to look. I pulled on a cotton night cap without glancing in the mirror.

It's not so much my hairless head that's troubling. It's the transition from cancer in the abstract to cancer in the concrete. Sure, I had the noticeable but nonthreatening-looking tumor that gave me the drooopy eye look. And I saw the evidence of cancer throughout my body on the PT scans. But now I'm sporting the most obvious sign of a cancer patient.

I know it won't take long to adjust to the concept or the aesthetic. I have a basket full of silk scarves that haven't seen the light of day since the late 80's. I have a new wig that's as cute as any cut I've ever had. And I'm on the prowl for non-clinging hats (think soft French beret) that downplay the skull.

But, for now, I'm avoiding looking at my naked head.

More Slumber

It turns out that my need for zzzz's is a combination of the Atavan and a simple cold. I developed a cough on Monday, before checking in, and was sniffly and sneezy on Wednesday, but still thought nothing of it until my fever spiked to 101 today. Just to be on the safe side, Dr. Snyder (the weekend doctor) sent me down for a chest x-ray. These strong doses of chemo have compromised my immune system, so a "simple cold" can easily turn to pneumonia if we're not careful.

I hope this doesn't delay my homecoming tomorrow.

It's back to dreamland for me now.

ZZZZZZZZZ

The nurses have given me additional doses of Atavan for the nausea and throwing up I've been experiencing. As before, the Atavan works for the nausea, but also sends me straight to slumber land.

If you plan a visit, I recommend that you call the nurse on duty and ask if I'm awake.

Other than that, all's well at Hotel Hope.

Dancing with the Stars

Two of my favorite nurses, Beatriz and Margaret,
take a spin with my "dancing partner."

Pole Dancing

"Slip, slide, wrap, spin, swing, emote and writhe like a vixen."

That's how Debbi began her recent story about pole dancing for Senior Life Magazine.

Unplug, stroll, pull, push, spin, and untangle cords like a cancer vixen. Although my version of "pole dancing" may not be as sensuous as Debbie's, I'm determined to make the most of the 24-7 dance partner tethered to my arm. I'm no longer afraid that I'll pull out my PICC line or die some ironic death, like getting strangled by my own IV cords.

Let the pole dancing begin!

I start out the morning with a pole stroll down the tiled halls. I push my partner through a series of double doors and then pull him over the carpet into the light-filled lobby. We serpentine through a series of columns - left, right, left, right - with my hospital gown billowing. Like those hoofers on "Dancing with the Stars," we make it look easy.

I stop to twist and turn and untangle the electrical cord that's become wrapped up in my IV cords. We make one more spin around the lobby before heading back to the room. We smile and nod as we pass the staff, silently wondering if they noticed our routine.

Back in the room, I smooth the cords and recharge my partner. He'll go back to silently dispensing chemo and meds until our next mid-day pole dancing episode.

Walking the Walk and Riding the Ride

Before becoming a professional patient, I worked at a small marketing communications firm that specializes in the energy efficiency industry. I pitched this story, "Another Way to Work: Employees Use Alternative Means of Commuting" (written by Business writer Rodney Tanaka) that appears in the Thursday, April 19, edition of the Pasadena Star News, San Gabriel Valley Tribune and Whittier Daily News. The gist of the story is that Geltz specializes in the water and energy efficiency industry and the staff "walks the walk" by biking, hiking or taking a Hybrid to work.

I'm not in the photo because the photographer came out this morning while I'm at Hotel Hope. During my hospital stay, I'm continuing to do my part to conserve energy by not driving my car, not running the clothes washer and dishwasher and not using the blow dryer.

Tick-Tock, Tick tock

If I look straight ahead from my hospital bed, here's what I see - an analog clock with a sweeping red second hand above an analog calendar.

I find that I only worry about the hands of the clock twice during the day: before Dr. Forman makes his rounds at 7:30 am and when it's time for Martha at 10 am. Today, the hours flew by with a long Atavan-induced nap, a new PICC line insertion, a visit from a nutritionist and social worker, several pole dancing episodes, a brief visit from Cindy (who came here by bus because George is in SF), reading, writing and talking on the phone.

But it's the nights when the seconds seem like minutes and the minutes like hours. My sleep comes in 15-minute intervals until I'm woken up by a beeping IV, a nurse taking blood or vitals, a nurse changing chemo bags or a bladder that needs emptying. But before I know it, the minutes have turned to hours and the 18 on the calendar mysteriously beomes a 19.

Shampoo

In my last act of frugality before checking in to Hotel Hope, I am refusing to shampoo my hair.

No, it's not the pennies for the shampoo that have me worried. It's the mass exodus of hair that's sure to go down the drain when I massage my scalp.

The pipes in our 1928 English Tudor-style home were not designed with chemo patients in mind. The industrial-strength plumbing system at City of Hope, on the other hand, was engineered for folks like me.

So I'll save the $75 for the roto-rooting and wait to shampoo at Hotel Hope later today.

(Our plumber, by the way, lives two blocks away from us in an elaborate 4,000-square-foot mini mansion.)

Food, Prizes and Celebrations

I can't think or write about food on this blog without mentioning Jonathan Gold. He's been my guru since I "discovered" his genius for food and writing in the 1980's when he wrote the "Counter Intelligence" column for the LA Times.

He's equally articulate at describing the best "roach coach" in town with the tastiest carnitas tacos or the finest French restaurant with the most delectable foie gras.

Yesterday, Gold became the first food critic in history to be honored with the Pulitzer Prize, the highest award in the field of journalism. Think Oscars for writers.

When I check out of Hotel Hope next weekend, I plan to celebrate my homecoming and Gold's prize by visiting one of his favorite LA food spots. (See the April 11 posting.)

Round One Roundup

Round one of Hyper CVAD is nearly completed, and I'm scheduled to check back in to Hotel Hope on Tuesday for round two of eight.

After doctors promised, "You WILL be sick," not "You might be sick," I was prepared for a rough voyage. Instead, I've experienced smooth sailing on calm seas.

Here's a roundup of round one:

• Eye, Eye: We haven't taken any scans yet, but the tumor on my right eye appears to be shrinking.

• Skin Deep: The persistent, one-year skin rash on my torso has nearly disappeared.

• A Full Life: My life so far has been relatively active with time each day for family, exercise, socializing, reading, writing, working, running errands, light gardening and (the latest addition to my new lifestyle) napping.

• Drive Time: Between treatments, I'm a frequent visitor to the City of Hope for PICC line cleanings, blood draws, consultations and chemo. Except for the chemo visit, I've been able to drive myself.

• Food, Glorious Food: Other than a brief, three-days sans appetite, I'm continuing to enjoy the pleasures of the palate. (Ooh, that sounds a little naughty!)
  

• Hair Today, Gone Tomorrow: Since my hair started "shedding" three days ago, our house looks like it's been invaded by a Welsh Corgi during a heat wave. There are short clumps of hair everywhere. Chances are good that I will have made the transition from Welsh Corgi to Mexican Hairless by the next time I see you.
  

I know that many people from all over the country are praying for me and/or thinking positive thoughts for me. Thank you all so much for your continued prayers, good thoughts, love and support. Every day I count my family and many friends as the greatest blessings in my life.

The Cancer Card

A cancer diagnosis can be like a "get out of jail free card" in the Monopoly game of life. Play your card right, and you can use it to get out of tiresome social engagements, home chores, professional responsibilities and even the death grip of telemarketers. Like American Express, the card is universally recognized and accepted.

The sad irony among card-carrying members of the cancer set, however, is that we don't like to flash our cards. In at attempt to maintain a level of "normalcy" in our lives, we would rather attend the cousin's boyfriend's concert, unload the dish washer, or, God forbid, talk to a telemarketer than admit that cancer is taking us off course. Especially when it comes to professional responsibilities, I know that many cancer patients live in fear that their work will be dismissed or diminished because of their diagnosis.

Don't get me wrong. It's not that we don't want to use the card; we just don't want to abuse it.

Two weeks ago, I finally encountered a situation that I thought merited use of my exclusive Cancer Card. As many of you know, I love a good coupon, especially when it's $6 off for a much-needed dog grooming. While at Hotel Hope, I realized that my coupon for grooming at Steve's Pets had expired.

No problem, I thought; I can use my Cancer Card for personal gain. I called the groomers and explained that I was an in-patient at City of Hope when the coupon expired and requested that they extend the special offer for just two more days so that I could take advantage. If you live in the San Gabriel Valley, dropping the name "City of Hope" is as good as saying, "I have CANCER." I figured that being an in-patient made me an even more sympathetic customer.

To my surprise, the owner impatiently reminded me, "We sent out that coupon on February 16. You've had plenty of time to redeem it." And then she hung up on me.

Cancer Card: Denied.

I guess I'll just have to pay full price for grooming like all the other non-Cancer Card carrying dog owners in Altadena. But there's still hope for slipping out of the grips of the telemarketer.

It's the 'roids, man!

Life on chemo has been described as a roller coaster at best. Between "main lining" highly toxic chemicals, coping with dangerously low white blood cell counts and feeling the artificial boost of steroids, I haven't been certain if my body's been up, down or round the bend over these last three weeks.

Since oral steroids were part of the protocol on days 11 through 14, I wasn't even aware that my white blood cell count had dipped to alarmingly low levels during that time frame. I was flying high on one hour of sleep in a 24-hour period.

Dr. Forman and I were relieved to learn yesterday that the inoculation I received on Monday boosted my white cell count to above normal levels. Ironically, just when my white count is soaring, I'm feeling the most tired. I'm maintaining a fairly active life (yesterday was Pilates, a bowling party for the children of Hillsides and a 3-hour appointment at CofH), but "I feel the need, the need for speed" has been replaced with "I feel the need, the need for zzzzz's."

When I asked Dr. Forman why I feel tired now and felt so good when my levels were low, he got a glint in his eye and said, "It's the 'roids."

Life's Synchronicity

Near Synchronicity: Less than 12 hours after meeting City of Hope CEO Michael Friedman, a book club friend sent an email invitation to an event sponsored by the University of Tulane. I peaked at the published 28-name guest list and saw that Dr. Friedman (Class of '68) and his wife Dr. Elizabeth Short plan to attend. But I won't be there because I'll be checked in at "Hotel Hope" during the event.

Double Synchronicity: I attended a cooking class last night at the Pasadena Buddhist Temple. Several months ago, I invited a woman I met at an Alhambra sushi bar. She has become a regular at the class, but we've never managed to show up on the same night. Until last night. I shared my latest diagnosis and treatment news with her, and she volunteered that she had just completed her second mastectomy and reconstructive surgery. She was back to teaching yoga classes less than four days later. What a woman! Two of her yoga students, who also attended last night's class, said that Amini is gifted at helping her students get in touch with their needs. Sign me up!

Four months ago, at this same cooking class, I became reacquainted with an old friend I first met at Mommy and Me Class in Pasadena 17 years ago. She is now a nurse in the hematology department, specializing in bone and stem cell transplant at (you guessed it) City of Hope.

The Power of Two: I plan to attend a writers' group in Encino this morning. After the meeting, I'll play homage to two of the gurus in my life. I'll follow the advice of Jonathan Gold, my favorite food critic, and get takeout food from Alcazar, an Armenian restaurant that Gold considers the best of the best.

And to follow the lead of guru Paula, the Encino double dipping will help me come close to unleashing the "power of three" by grouping two activities together. And just to add a little dose to the "freaky factor," it turns out that Alcazar is just a few steps down from the restaurant that's hosting the writing meeting. (Cue "Twilight Zone" music now.)

When I recently shared similar stories with Skye, she asked, "Do you think these things happen to you more often, or are you just more aware of them?"

I think part of it is being unafraid to go to a sushi bar alone, striking up a conversation with the couple sitting next to me and letting things unfold from there.

What do YOU think?

Surprises at the City of Hope

My follow-up visit at CofH today included a blood draw, a consultation with Dr. Forman, a mini chemo infusion and at least two surprises.

I was surprised to learn from Dr. Forman that my white blood cell count, which was drawn last Friday, had plummeted from 1,000 to 400. Dr. Forman was concerned enough that he thought about calling me at home last weekend. The surprising thing is that I didn't feel "fatigued" at all. As a matter of fact, I had an active weekend that included a dinner party on Saturday night (thanks, Debbie!) and a large gathering of Andrew's family on Sunday. I've taken time for "resting" during the day, but haven't napped once since I checked out of Hotel Hope a week ago. It's encouraging to see that I'm still feeling energetic in spite of the white blood cell dip. I received an inoculation to help me keep the count up during the next round. (NOTE added July 2007: At the time I wrote this, I didn't understand that white blood cells have nothing to do with fatigue.)

While scheduling my next appointments, I spotted City of Hope CEO and President Dr. Michael Friedman, a diminutive but dapper man in a trademark bow tie. He stopped to chat with a volunteer and then with Dannie, my scheduler. I thought about introducing myself to him, but didn't want to be presumptuous. The next thing I know, he's introducing himself to ME because it turns out I'm the person he's looking for.

My friend Barbara R., who is on the Hillside's board with Dr. Friedman's wife Libby, is responsible for the connection. He said that he tried to visit me while I was an in-patient, but I had already checked out. Cindy, Andrew and I sat down and chatted for several pleasant minutes with Dr. Friedman. When he asked how I was being treated, I told him that I had the best doctor in the house. He disagreed and said that Dr. Forman isn't just the best in the house; he's one of the best in the world. I did tell him that I'd experienced a couple of administrative snafus along the way, but everything was satisfactorily resolved. He gave me his card and asked me to call him personally if anything ever came up.

It was no surprise that Dr. Friedman, like Dr. Forman, seems to be that rare combination of genius and graciousness.

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.)

Cancer Thriver

Two Days After Homecoming

George contemplates the preparation for his colonoscopy while Susan (sporting pixie cut) describes the big one that got away.

Photo courtesy of Skye Moorhead

Comment Housekeeping

Since I've received so many email from friends about difficulty in posting a comment, I decided to change my blog settings so that ANYONE can post without being registered. This should make it easier for the unregistered to leave a comment.

At the same time, to avoid spammers, I decided to change the setting so that comments are not immediately posted. (As Paula put it, I already have cancer; I don't need a penile enlargement too.)

For those of you who were accustomed to posting a comment and seeing it immediately, we now have to wait until I see the comment in my email, review it and hit "publish." If this becomes a bit cumbersome, I may go back to the old method.

Susan

A New Favorite Thing

After returning home from Hotel Hope, I developed a bad attitude about food. I still liked to talk and read about it; I just didn't like to eat the stuff. As hematology nurse friend Melanie warned, food becomes sustenance, not satisfaction.

When meal times rolled around, I would dutifully eat the most nutrient-rich foods possible. My brain said, "You need this," but my stomach cried, "Get away from me." Without an appetite, eating was just one more chore on my "to do" list.

That is until this morning. My 9 am Pilates class at the Pasadena YWCA was cancelled, but a staff member offered me a conciliatory potato ball from Porto's Bakery in Glendale. And since the Y had purchased these Cuban treats to commemorate 102 years of service in Pasadena, I agreed to try one.

A close cousin to the French croquette, the Cuban variety consists of seasoned ground beef surrounded by mashed potatoes deep fried to golden perfection.

When I bit into the savory treat, my taste buds immediately began a party. If I was a cartoon character, the animator would have drawn my mouth as a celebration, with flags flying and fireworks rocketing.

Although the ingredients are essentially the same, the Cuban potato ball bears no taste resemblance to its bland Japanese relative, the korokke. A few weeks ago, I learned to cook this popular snack food at the Pasadena Buddhist Church. But even with a dip in tonkatsu sauce, the Japanese croquette just doesn't measure up to its sassy Cuban counterpart.


I haven't yet tried the Dutch adaptation, the kroket, but I understand that it's so popular in the Netherlands that you can order a side of McKrokets with your Big Mac at McDonald's.

But I can't imagine anything cheaper or more delicious than the Cuban potato balls at Porto's Bakery. At 60 cents a piece, they have to be the most satisfaction per cent in town.

(Do you have a favorite cheap treat? Please share in the comments section.)

Homecoming

(Yesterday I meant to write about my homecoming, but I got sidetracked by the Newsweek article.)

My "ride home" Paula of Ice House fame burst into my room filled with good humor and potential material for her next standup routine. "The hospital might be called Hope, but the parking lot is hopeless," she quipped in reaction to a 20 minute search for a car slot. Paula hasn't had to struggle so hard to find parking since the last shoe sale at Nordstrom's. We think it might be a good idea for her to become ordained as a Unitarian minister so that she can score one of the choice parking spots reserved for the clergy.

As we made the drive from Duarte to Altadena, we both made the ironic observation that room visitors are required to scrub up and don surgical masks, and yet we had no protection against the brown smog that hugged the mountains that day.

After a quick trip to Ralph's Market and Webster's Pharmacy, I settled in for an hour-long nap. My white blood cell counts are still high, but, after a week of sleepless nights in the hospital, I was exhausted.

Later that night, with two purring cats, one barking dog, one snoring husband and one noisy teen filling the house, I slept like a baby. Life is good.

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.

Hospital Novelty Factor

How long does it take for the novelty to wear off?

- Pushing the up and down buttons on the bed while whipping my head and singing "She's a Maniac" ala 1980's Flash Dance: Five Minutes

- Ordering room service: 36 hours

- Feeling well cared for and nurtured by the exceptional CofH staff: Never

I'M GOING HOME TODAY!

Best. News. Ever.

With all my "connections" at the City of Hope - the former COO, one degree of separation from the CEO and a CofH board member among my friends - it turns out a simpler one may have produced the result I've wanted all along.

When Dr. Snyder, the assistant head of the hematology department, made his rounds on Saturday morning, he announced, "I hear you have a lot of friends looking out for you." He mentioned Barbara, a friend who lives next door to my friend Mary. Barbara happens to be married to a prominent Pasadena oncologist, but her chance meeting with Dr. Snyder had nothing to do with the medical community. They had run into one another at temple the night before and Barbara asked Dr. Snyder to make sure I was well taken care of.

Dr. Snyder then asked me if Dr. Forman was my permanent doctor. I told him that he wasn't, but I sure would like him to be. He suggested, "Just ask him."

This morning I asked the world famous head of the hematology department, Dr. Forman, if he could take over as my permanent MD, and, to my delight, he said, "I think we can arrange that." Thirty minutes later it became official!

Best. Pizza. Ever.

Amazing how quickly the novelty of "room service" food wore off. Last night, the nurses gave us a tip about the best pizza delivery place in Duarte. George ordered a large cheese pizza and hot wings for me and I managed to eat three slices and three wings without a trace of heartburn or nausea. After a week of blandness, it was indeed the best pizza ever.

True or False?

Since my bon voyage party, I've discovered that several misconceptions are circulating about my family. I thought I'd take a moment to clear up a few:

- Susan has a sister named Piper: FALSE
Susan has an older brother named Robert. His screen name is "Piper Robert" as in "bag piper." He's a tartan-toting, kilt-wearing, part-time professional bag piper in the Scottish state of West Virginia.

- Susan's sister (Piper?) was helping in the kitchen at the party: FALSE
Many thought that Lilliana, the lovely and elegant woman helping in the kitchen, bore a family resemblance, in spite of the fact that she's Latina and I'm half Japanese. The confusion more likely resulted because Lilliana was working so hard - something we expect more of from family than friends or even hired help.

- Susan has a younger, hermit-like brother James who does not stay in contact with the family. SAD BUT TRUE
We're trying to track him down so that we can let him know about my health. Who knows - we may need him as a stem cell donor.

Dreaming of Food

I floated in and out of sleep last night with the Food Network chefs whisking in the background. At 2 am, I saw Rachel Ray whip up crab and corn chowder, served along a side of New England-style hot dogs with Napa slaw. Another chef, famous for using the ingredients in his freezer, created succulent quesadillas with frozen chicken thighs, the ubiquitous onions and garlic, cumin, canned Italian tomatoes and chillis.

Bobby Flay, by comparison, was too complicated and the high power gas stove and grill that he flaunts left me cold. But I like Sandra Lee, the queen of semi-homemade cooking, because she epitomizes the lazy but semi-stylish flair I like to emulate.

It's 8 am and the energetic Rachel Ray is back on with a recipe for Crouque Madame, a French ham and cheese sandwich (Crouque Monsieur) topped with an egg. Cindy and I had our first Croque Monsieur nine years ago after we Chunneled together from London to Paris for a three-day jaunt. Cindy was a notioriously picky eater, but she fell hard and fast for French breads (baguettes and croissants) and Croque Monsiuers.

Years later, the Croque Monsieur became a secret weapon. During her troubled teen years, it took serious bribing to get her to spend time with me. I knew I had used the last of my arsenal when she refused a lunch of a Croque Monsieur at the Le Petit Beaujais in Eagle Rock during those turbulent times.

Today as a young lady of 18, I no longer need to ply her with her favorite foods. Miraculously (and those who know our story realize that I don't use that word lightly), she looks for excuses to spend time with me. As a matter of fact, she is now slumbering in the cot beside my City of Hope hospital bed.

Room service has just called to take my order, but there are no Croque Monsieurs or Madames on the menu. Instead, I'll have herb tea, wheat toast with peanut butter and an orange while I replay the memory of a sunny French cafe with Cindy scarfing down Croque Monsieurs thick with rich bechamel sauce.

But I have a feeling that the memory of toast and a sleeping teen will be etched just as permanently on my mind.

Please share some more of your favorite food memories with me in the comments section.