I Feel Gooood (So why do I feel so bad?)

I usually go through a 36-hour “detox” period after checking out of Hotel Hope. Nausea. Lackluster appetite. Low energy.

Not so this time. I checked out on Monday afternoon and hit the ground running with none of the usual chemo side effects.

Ordinarily, this would be a good thing, but not so this time. My boundless energy and hearty appetite underscore the reality that I received a reduced dosage of chemo during Round 4. My blood counts simply couldn’t take the assault of a full-on regimen.

What’s more, the plans are moving forward for the auto stem cell transplant without the benefit of Rounds 5 and 6. I met yesterday with my nurse coordinator, and July’s calendar is filling up fast with tests (bone marrow biopsy, PET scan, CT scan), clinic appointments, Hickman catheter insertion, Hickman training, a small dose of chemo, ten days of injections and, ultimately, the stem cell harvest.

If all goes “according to plan,” I could be hunkered down for my month-long stay at Hotel Hope before my birthday on August 15. Of course, a lot could happen to take me off course, but . . . one day at a time, one day at a time.

Susan hits the Spot on Friday

Now that Susan's done with another round of chemo, the race is on to get her innards in shape for her next visit to Hotel Hope.

As you may have gathered, cancer is a full-time gig for Susan, and she's missed seeing friends minus the drug-induced fog of chemo.

So, she's going to park her pole-dancing derrière at The Taco Spot on Friday and enjoy a leisurely, late lunch.

While there is no medical evidence that spicy shrimp tacos boost platelet production, why take a chance? Better for her to eat tacos now in case researchers discover a correlation later!

I, your faithful cancer correspondent, will be there as well, most likely up to my neck in nachos.

Why don't you play hooky and stop by for a visit and/or lunch? (If we're lucky, the hunks from the fire station across the street will stroll in.)

Here are the details:
Friday, June 29
1 to 2:30 p.m.
Stop by anytime during Susan's "office hours"

The Taco Spot
2006 Colorado Bl. Eagle Rock
Here's the menu.

There's street parking and a small lot in back. This is a BYOB (buy your own burrito), very casual gathering. Seriously, wear your flip-flops.

If you think you'll be dropping by, just email Susan or leave a comment here, and we'll corral enough chairs. The restaurant should be emptying out by 1, so it'll be quiet enough to talk, possibly about the aforementioned muy caliente fire fighters.

Oh, and Susan's progress, of course. We can chat about that, too.

I'm Too Sexy for my Hospital Gown

Thanks to my brother and Mrs. Duck, I am now the proud owner of two red feather boas, the de rigeur accessory for every in-patient pole dancer.

Between my in-room "incident" and flamboyant pole strolling, I think I've developed quite the reputation here at CoH.

Come and Get 'Em - Plums & Apricots Are Ripe

I made this easy-to-prepare apricot and plum clafoutis from a recipe on the Williams Sonoma website for Father's Day. I'd never heard of a "clafoutis" before, but it's a like a French version of the humble cobbler - just a little more refined with brandy mixed in with the fruit and lemon zest added to the batter.

If you'd like to try your hand at a clafoutis, or if you'd like to bite into a freshly picked plum or apricot, please let me know. I'll be home from the hospital on Monday.

Annette, a fellow freecycler who posted that she's looking for apricots and plums, will be coming by on Wednesday to share the bounty. It turns out that she's also a one-year cancer survivor and received her diagnosis when her daughter was just one month old.

Terminal Embarrassment

When I first got my mantle cell lymphoma diagnosis , I thought, "Oh my god - this is how I'm gonna' die."

Then I heard about the treatment. You know you're in trouble when your regimen includes the word "hyper," as in "hyper CVAD." For a while, I was convinced that the chemo would do me in.

But when I checked in to Hotel Hope and met the IV pole, the contraption that would be tethered to me 24-7, I sensed that the "pole of death" could place first in a trifecta race to the grave.

In spite of that lousy first impression, the pole and I eventually became friends, gliding gracefully through the halls and pole dancing effortlessly in the lobby.

Until this morning. On the way back from the bathroom, I yanked him over his cord. He came crashing down to the floor and bonked my bald head in the process. I screamed, "Help, help, get him off of me," until two nurses came to my rescue. The whole thing reminded me of a blind date I had in college.

After I regained my composure and nurses checked my vitals, I got right to the heart of the matter, "This isn't going into my chart, is it?"

"You betcha it is," they laughed, as they took off down the hallway spreading the tale.

Forget cancer and chemo. Can a person die from embarrassment?

Platelets Behaving Nicely

Hurrah! It's finally happened.

My platelets exceeded the 100,000 count benchmark and rose to 116,000. My bed and pole are waiting for me at Hotel Hope, so I'm off and running.

More "Things To Do Before You Die"

A few months ago, I blogged about the current publishing trend of listing things one should see, do, eat or visit before kicking the bucket. Since then, I've had a lot of time to mull over the things I want to do and foods I want to eat before the final chapter of my life.

All of this contemplation has made me realize that I've been tall on talk and short on action. Just yesterday a friend suggested that a group get together at Papadakis Tavern, the plate-smashing, Greek-dancing restaurant in San Pedro. George and I have been talking about crashing China (the dinnerware, not the country) with our friends for more than 20 years. Isn't it time we just did it and found out for ourselves that we weren't missing out on a thing?

And ever since seeing Terrie Silverman (artist-in-residence at Beyond Baroque) and two of her students read their work at an IWOSC Reads Its Own event two years ago, I've talked about taking Terrie's class. I've blathered about working on a monologue and fantasized about one day doing a one-woman show. But I've never moved beyond the stage of attending one-woman shows as "research."

All of that is about to change. A few weeks ago, I received a forwarded email from Terrie. The producer of "The Big C," a June 16 cancer survivor month event at the Hollywood Presbyterian Medical Center, was looking for performance pieces. After a few emails with the producer and a meeting with Terrie, I decided to turn "Pole Dancing" into a ten-minute monologue.

Since I didn't know from day to day if I'd be at Hotel Hope, I ultimately had to let The Big C go the way of The Big D. Terrie invited me to participate in her Gorgeous Stories event in Pasadena on June 22, but I'll definitely (or as definitely as my life goes these days) be in the Big House on that day and will, once again, have to pass.

At first, I was a little down about these "lost opportunities," but I soon realized that we live in a town (and a world) with new chances around every corner. An email from IWOSC announced that they're hosting another IWOSC Reads Its Own event on July 15 at Dutton's Bookstore. Terrie will host another Gorgeous Stories event in a few weeks. Who knows if I'll be in or out of the hospital on either of those dates, but the piece is ready (or at least a respectable "work in progress"), the red feather boas are waiting, and I'm practicing "pole dancing" in public, much to the horror of my free-spirited teen.

I know I've asked this question before, but here we go again: What's on YOUR list of things to do, see or eat before you die?

Up, Up and (Almost) Away

All of your prayers, positive thoughts, powerful imagery and crossed fingers, toes and eyes appear to have done the trick. My platelet count rose from 50,000 to 90,000 over the last week.

I'm still just under the 100,000 absolute minimum required for admission, but I'm almost there. I'll go back again on Thursday for yet another blood draw and consultation, but it should be a slam dunk. (Oops, I should be careful about the "dunk" imagery.)

This morning I was pleased to meet Emily, the nurse coordinator for my stem cell transplant. She'll be a key member of "Team Susan" during this process. We're all still hoping that it will be an auto (my own harvested stem cells) rather than an allo (donor) transplant, but Emily said that there's no way to know if I'll have enough stem cells until we're actually in harvest mode.

My calendar dependence is gradually going "up, up and away," but I'm still working on letting go of having to know and control the outcomes of everything else in advance.



.

Boing, Boing, Boing

After I got the "bad news" on Monday, I spent 24 hours wallowing, worrying and obsessing. But I hit my nadir and came bouncing back, ready to enjoy a few more days of feeling the best physically since BC (before chemo). It's been nearly five weeks since the high-dose toxins have coursed through my veins.

All of this begs the question: If I'M so physically and emotionally resilient, what's with my platelets? I'm still dreaming of platelets multiplying, bouncing and soaring, but I'm prepared for any results that may come my way on Monday.

Winning the Lottery

I was so moved after reading the comments on Paula's "Platelets Behaving Badly" post. You are just like me in that you have a need to take ACTION. I was awake into the wee hours because I was developing a plan to mobilize the Southern Cal. Hapa (half Asian, half Caucasian) community. Then I realized that I'm jumping ahead of myself. (I still hope that my platelets will be fruitful and multiply.)

The chances that any of my friends would be a match for me are pretty slim, but the odds that any of you could be a match to another "friend in need" are less staggering. Every day, thousands of patients are searching for a donor.

Several of the donors on the Asians for Miracle Marrow Match website described finding out that they were a life-saving match felt like "winning the lottery." Let me ask you this: If you could choose between cashing in on a million dollars in the California Lottery or saving a life, which would you choose? (Luckily, it's not an "either or" proposition - you can buy lottery tickets AND register as a possible donor.)

As Paula mentioned, the process is as simple as swiping a swab in the inner cheek. And you don't even have to leave home to do it. You can sign up online with the National Bone Marrow Program Registry and they'll send you the tissue-typing kit for a $52 donation.


If you'd prefer to do it in person, there are many opportunities in Southern California, including these. If you're not in Southern California, search the NBMP website for a drive near you. The Asians for Miracle Marrow Match also hosts ongoing opportunities throughout the Southland. (And, no, they won't turn you away if you're not Asian.)

If you are a match, the process of donating stem cells is surprisingly simple - a little like donating platelets. One IV takes out the blood, the stem cells are extracted and then the blood (sans stem cells) is pumped back in through another IV. To find out more, check out the FAQ on the National Bone Marrow Program webwsite.

How is my life like a Stephen King novel?

When I began this blog, I hoped (and feared) that the entries would eventually become predictable, dull and monotonous. "Check in to Hotel Hope. Get high doses of chemo. Go home for two weeks. Repeat." And I looked forward to the day when my entries would put readers to sleep ("Had another good day today") so that I could switch over to my "Open Mouth, Insert Fork" blog.

I wanted my story to be the safe, formulaic work of a hack, complete with a happy ending.

But my saga is beginning to be more like a Stephen King novel. Not in the pig's-blood-dumping-on-the-prom-queen way. In the unpredictable, sitting-at-the-keyboard, I-have-no-idea-where-this-novel-is-going style that I've read that King employs when writing one of his spine-tingling tales.

If I wrote fiction, I'm afraid I'd have to know the endng in advance and would use a detailed outline to make sure I got there. Uncertainty be damned!

But now I'm adapting to a high level of uncertainty and many unanswered questions. And I have no idea how this story is going to end.

Will my platelets rise sufficiently in one week? Will I need to endure another bone marrow biopsy as Dr. Forman suggested? Will I be able to continue Hyper CVAD at a reduced dosage? Will the reduced dosage and prolonged schedule be a big enough gun to deal with my blastic variety of mantle cell lymphoma? Will my bone marrow be able to pump out a sufficient quantity of stem cells for the autologous stem cell transplant? If not, is an allogeneic (donor) stem cell transplant the right decision? If so, will a family member be a match? If not, will I find a match on the national registry? Will I develop graft versus host disease, a common complication of donor transplants? Will I reach complete remission? If so, how long will I stay there?

I wish I could flip ahead, find out the answers to these questions and learn the ending. But I'm just going to have to take it one spine-tingling page at a time.

Platelets behaving badly

Were you guys sending Susan platelet-boosting vibes this weekend? Yeah, me too!

Let's all kick it up a notch because you-know-who's lab results were basically unchanged from last week. Ultra-low numbers mean no chemo, which means the whole process gets stretched out.

According to Susan, Dr. Foreman actually used the word "worried." No one wants to hear that type of language from an oncologist! After hearing that, she was bummed enough to:

a) drown her sorrows with some retail therapy, and

b) call me from Costco to request that I update the blog with this crappy news.

What's really troubling is that this slooooooooow platelet production problem may prevent her from doing an autologous bone marrow transplant. That is, harvesting her own post-chemo cells, zeroing out her white blood cells, and then transplanting her own now-clean cells back into the mix. (Is that mostly right, Suze?)

So...there's a chance she may need to find a bone marrow donor who has the same 12 key markers she does. Sure, CoH will check the national bone marrow registry, but her half-Asian-ness could make finding a match more difficult.

Let's be proactive! For instance, if you have any other half-Caucasian/half-Asian friends, why not start sucking up to them now? In a few months, they may be more than happy to audition to be Susan's donor.

I don't have all the details, but the initial test for donors is just a swipe with a swab on the inside of the cheek. The actual donation process does not take long. I'm sure Susan will give us the full poop.

The good news is that Susan feels great, platelet-challenged as she is. She'll head back to CoH next Monday for another blood test.

Platelets, people. THINK PLATELETS!

Is today the day?

I sure hope so! I have a 3:30 pm appointment for a blood draw and consultation with Dr. Forman. We had our traditional sukiyaki send-off dinner at home last night. My bags are packed. The feather boas (more about this later) are rarin' to be put into service.

I'll post from my remote location at CoH as soon as I get the word.

Dos and Don'ts

After rereading my article from ten years ago, I realize that my circle of friends could be the source for a "Things to Do" article.

As the article hinted, I think it's important for friends to find a way in which they feel comfortable in showing their love and support. Many of you do this through your comments on this blog. I read and reread the comments, present and past, and marvel at the sense of caring, connection and community they create.

But that doesn't mean that non-comment leavers are any less supportive. I have many close friends who feel uncomfortable with the public forum and show their support in other ways.

I receive frequent phone calls, emails and cards. I've been on the receiving end of flowers, scarves, hats, books, feather boas and other thoughtful gifts. Many friends have visited me in the hospital and brought newspapers, magazines or treats. One friend walks with me on a regular basis, even though my low hemoglobin counts mean that I frequently need to stop for breath breaks. Another friend drives a long distance to join me for yoga classes. I'm able to drive myself to CoH appointments 90% of the time, but I'm glad that I have a long list of friends I can count on when I need transportation.

Since I wrote about the potato balls at Porto's Bakery, I've received three "care packages" from friends who just happened to be in the area. (Hmmmm, maybe I need to blog about the lobster at the Palm.) Other friends have made and dropped off extra batches of food for our family. Even though I'm able to cook on most days, it's always a treat to have something ready made, particularly at lunch time. It's especially comforting to know that I have some nutritious soup in the freezer on the two guaranteed "off" days after I check out of Hotel Hope.

As some of you read this, you are, no doubt, feeling guilt. You might be thinking, "I could do more" or "I should do more" or "I wish I could do more." This prompts the one "don't" on my list: "Don't feel guilty!" I am the first to realize how busy our lives are. When I wrote the LA Times article, I was in a position to be actively involved in two friends' lives. But I carry a lot of guilt for not "being there" for other friends in need because my own life was in chaos or turmoil at the time.

The LA Times article makes reference to the "cook club" that a neighbor organized for our friend Mary Ann. We all thought that a meal a week was a very realistic way that we could support Mary Ann and her family. We kept up the cook club for nearly a year, continuing for several months after Mary Ann's death. At first, we all took great care in the preparation and presentation of food, but, over time, the hectic nature of our daily lives made it a challenge. I often felt that I was neglecting my own family. ("No, you can't have that; it's for Mary Ann's family.") Sometimes when my designated day rolled around, I realized that I'd failed to prepare a meal and made a mad dash for take-out food. The lesson I learned is that it's imperative to support someone in a way that fits in easily with your own life. That's not being selfish; that's being realistic.

I send hugs to all of you who have shown your love and support in so many caring ways, along with the admonishment to let go of guilt.

When a Friend Has a Serious Illness

After two young friends were diagnosed with terminal cancer more than a decade ago, I wrote the article below for the LA Times. This was one of the most diffiicult articles that I've ever written because I needed to conduct very focused phone interviews with several seriously ill patients. I kept it together during the interviews, but lost it after I hung up the phone.

I haven't read this article for several years, but I'm happy to say that it holds up from the other side of the fence.

Showing True Friendship in Sickness and in Health; Relationships: If their illness is serious--terminal or not--they'll need your support. Let them know you care and explain how you can help.:[Home Edition]
SUSAN CARRIER. Los Angeles Times (pre-1997 Fulltext). Los Angeles, Calif.:Feb 21, 1996. p. 5

Author(s):	SUSAN CARRIER
Document types:	Infobox
Section:	Life & Style; PART-E; View Desk
Publication title:	Los Angeles Times (pre-1997 Fulltext). Los Angeles, Calif.: Feb 21, 1996. pg. 5
Source type:	Newspaper
ISSN:	04583035
ProQuest document ID:	16669634
Text Word Count	1536
Document URL:	http://proquest.umi.com/pqdweb?did=16669634&Fmt=3&clientId=13497&RQT=309&VName=PQD

Abstract (Document Summary)

When my friend and neighbor Mary Ann, an energetic 41-year-old with two young children, announced that she had cancer in the lower half of her body, I collapsed in a heap on the nearest couch and sobbed. After I pulled myself together, I sensed that I had failed Lesson One of "When a Friend Has a Serious Illness." I soon learned that my reactions were not unique. Fear of intruding, fear of invading the family's privacy, feelings of helplessness, fear of saying or doing the wrong thing around an ill person or their family are all common responses. Sometimes the fears and feelings of helplessness are so overwhelming that friends and acquaintances take the safe route and do or say nothing at all. Driving to doctor appointments, watering plants, folding laundry, coordinating meals, providing child care, responding to correspondence or phone calls are all examples of practical help, but, as John Sallot, coordinator of the "buddy office" for AIDS Project Los Angeles, puts it, "Every person who is ill is an individual. It's important to communicate with them." Some people would welcome a friend coming in to scrub toilets; others would consider it an intrusion.

Full Text (1536 words)

(Copyright, The Times Mirror Company; Los Angeles Times 1996 all Rights reserved) When my friend and neighbor Mary Ann, an energetic 41-year-old with two young children, announced that she had cancer in the lower half of her body, I collapsed in a heap on the nearest couch and sobbed. After I pulled myself together, I sensed that I had failed Lesson One of "When a Friend Has a Serious Illness." I was unprepared to deal with the emotions her news would unleash. I felt consumed by my feelings of helplessness and fear of saying the wrong thing. I wanted to support Mary Ann and her family, but didn't know how. I soon learned that my reactions were not unique. Fear of intruding, fear of invading the family's privacy, feelings of helplessness, fear of saying or doing the wrong thing around an ill person or their family are all common responses. Sometimes the fears and feelings of helplessness are so overwhelming that friends and acquaintances take the safe route and do or say nothing at all. Gail Millan, a registered nurse and an education coordinator for Cedars-Sinai Medical Center, says it is important to put fears aside, to let the ill person know you care and to explain ways you can help. She identifies three primary forms of assistance: practical help, information related to the illness and general emotional support ("I'm here if you need to talk or if you need a hug"). When approaching a friend or his or her family, the general line, "If you need anything at all, let me know," is comforting and reassuring, but won't elicit a response if the person is reluctant to ask for help. "Be as concrete as possible. Identify something specific you can do," advises Valerie Ruelas, a social worker supervisor in the HIV/AIDS unit at County-USC Medical Center. Mary Ann's husband, Mark, agrees. "I really appreciate it when someone tells me to call if we need anything, but I have no idea if they're serious or how much time they have or what they're willing to do. If someone is specific, it opens up a dialogue." Julie Lichtenberg Stern got down to specifics by organizing a cooking club, a group of five friends who take turns cooking a meal for Mark and Mary Ann's family five nights a week. "I don't know what we'd do without it," says Mark. "There's no way I could do it {the cooking} right now. I'm working two jobs." Driving to doctor appointments, watering plants, folding laundry, coordinating meals, providing child care, responding to correspondence or phone calls are all examples of practical help, but, as John Sallot, coordinator of the "buddy office" for AIDS Project Los Angeles, puts it, "Every person who is ill is an individual. It's important to communicate with them." Some people would welcome a friend coming in to scrub toilets; others would consider it an intrusion. Sometimes emotional support is trickier to supply than practical support, although the two often overlap. In his book "Sometimes My Heart Goes Numb (Love and Caring in the Time of AIDS)" (Jossey-Bass, 1995), Charles Garfield writes that helping with household tasks "carries the elements of devotion: allegiance, dependability, trustworthiness, affection." For many caregivers and friends, going about these tasks lets them communicate that they care without the universal "fear of saying the wrong thing" syndrome. Ronnie Kaye, a therapist in private practice in Marina del Rey and author of "Spinning Straw Into Gold: Your Emotional Recovery From Breast Cancer" (Lamp Post Press, 1991), describes the syndrome as a panic experience. "When helpers feel they must take away pain, they feel an urgency that borders on panic." Sallot adds that once volunteers in APLA's buddy program understand that they don't have to solve every problem, answer every challenge or make the pain go away, the panic diminishes.Anger and depression, vulnerability and a keen sense of one's mortality (whether the illness is terminal or not) are typical emotions associated with a life-threatening illness. Kaye says, "Sickness often puts patients in touch with emotions that are terrifying to others. Some people will just run away." Not running away and becoming comfortable with those emotions is the challenge of caretakers and friends. Mary Spencer, who flew from Seattle to be with our friend Mary Ann a week before her death, said that looking at her friend's exhausted condition was the hardest thing she's ever done. "Sometimes I just massaged her neck in silence without bothering to chitchat. Other times we had heavy discussions about courage and letting go." "It's a delicate dance," says Sallot. To be silent or to speak. To rush over and immediately comfort someone when they are dying or to let them cry. To show your own emotions or to bottle them up. Often the friend must rely on intuition. For those willing to take the risk, the personal involvement can have an enormous impact. Darlene Blanchard, a 35-year old woman with a 1-month-old son, recently learned that she has had the AIDS virus for more than 10 years. Her childhood friend Valerie Lancaster has provided the emotional and practical support she needs to face the illness. "I'm one of the lucky ones," Blanchard says. "I couldn't get through this without my friends." (BEGIN TEXT OF INFOBOX / INFOGRAPHIC) When a Friend Becomes Very Ill THINGS TO DO * DO be as specific as possible about how you would like to provide practical or emotional support. If you are unfamiliar with the person's needs, ask. Then make appropriate suggestions. * DO listen. Randy Herrera, a volunteer with the buddy office at AIDS Project Los Angeles, recommends active listening, which he describes as the art of listening beyond the actual words and understanding their meaning. * DO respond nonjudgmentally. * DO provide respect and validation. Let the friend know it's OK to be angry or depressed. * DO try to find a way to bring joy into the patient's life. At a "Mad Hatter Tea Party" that Michelle Hyland and Sally Viera hosted, guests were asked to wear a hat and bring a hat or scarf for their friend Mary Ann, who had lost her hair during chemotherapy. "She truly loved it. It gave her a chance to feel like a whole person again," says her husband. Simple gestures such as offering the use of a hot tub, renting a video or offering a massage can be welcome comforts. * DO reach out even if you are not the person's closest friend. * DO apologize if you've said something insensitive or something innocent that was taken the wrong way. * DO guide each other along the way. Often knowing what to say and how to react is just as difficult for the patient as it is for the friend. Every person responds differently to the stresses of an illness. Some patients and their families like to be asked continuously for status reports; others consider it tiresome and an intrusion. THINGS NOT TO DO * DON'T take things personally. If the friend doesn't feel like talking or seeing you or if the friend seems angry or depressed, it's not necessarily about you. * DON'T allow the friend to become emotionally abusive. Call him or her on it by saying something like, "I want to be here for you, but I can't do it when you're angry and abusive with me." * DON'T treat the friend like an invalid. * DON'T expect the friend or his or her family to make you feel better if you are sad or depressed. * DON'T pry for details. If they are offered, listen openly. * DON'T come in with a preconceived notion about what the person should be feeling. Therapist Ronnie Kaye says that if you make up your mind in advance that people should be crying or sharing innermost feelings, you could end up irritating them. * DON'T put the friend on a time line for emotional recovery. Every person is unique. * DON'T invalidate a person's feelings. "Anything that invalidates a person's feelings is a crime," Kaye says. Examples include such comments as: "You shouldn't feel that way," "If you're not careful you're going to make yourself really sick," "Don't talk about dying," and, "Everybody has to die some time." * DON'T trivialize a person's feelings. Comments such as, "It's only temporary; your hair will grow back," to a chemo patient, or, "I get headaches, too," to a friend with a brain tumor belittle painful issues. AND ABOVE ALL . . . Never share a story about someone else who has died of the same disease. While this may seem like common sense, almost every patient with a serious illness has a similar story. "I think it's their way of bonding with me," says Jerry Cozell, 64, who is recovering from colon cancer. Renate Sperling, 58, who has lung cancer, says she has become "very selective" about who she tells about her disease. When someone tells her about another friend who died, it immediately brings her down, even though she knows that every case is individual. PHOTO: Darlene Blanchard, left, who has HIV, has support from friend Valerie Lancaster, getting a hug from their neighbor Stephanie Salls.; PHOTOGRAPHER: ROBERT DURELL / Los Angeles Times Credit: SPECIAL TO THE TIMES

Home Again

I was positive that this would be the day that I'd be admitted to Hotel Hope, but it didn't happen. My white blood cells and platelets have gone down, not up, since Tuesday. I'll have the weekend to visualize my bone marrow pumping out hundreds of thousands of tiny plates and miniature Caspers before trying again on Monday.

Many of you have wondered why I don't receive a platelet transfusion. I get the yellow stuff when my platelets fall to a dangerously low level to bring them up to safe levels so that I don't bleed to death from a minor cut or hemorrhage. But the transfusion can't raise the counts to the levels necessary to proceed with the next round of chemo.

I hate this. I feel as though I've lost control, but the truth of the matter is that I never had control to begin with.

My consolation prize is that we're meeting friends for dinner at a Los Feliz sushi bar. (Don't worry - I'll stick to non-raw fish dishes, like monk fish liver with ponzu sauce, barbecued eel and grated mountain potato.)

What's in Bloom?

Several years ago, when I was a garden docent at the Huntington, a volunteer wrote a popular column called "What's in Bloom?" Since gardening, one of my passions, is now a forbidden fruit, I'll do the same thing that I do when I can't stomach food - I'll write about it, starting with my own version of "What's in Bloom (and in fruit)" in our back yard.

I'm a big fan of David Austin English roses and have a dozen varieties in our rose garden, including my favorite, the Gertrude Jekyll shown above. I love the way the flowers grow in clusters and ruffle like a peony in the center. But the best part is the intoxicating fragrance. You'll have to come by for a whiff.

Our apricot tree is more prolific than ever. Every year I hope to "manage" the crop, but each year the same thing happens: hundreds of overripe fruits fall to the ground. I'm determined that this will be the year that more fruit is devoured by humans than by squirrels and birds. Between freecycle, this blog and some new recipes I've found, I'm sure to accomplish that goal.

I came close to purging our plum tree this year. I figured the ancient, scraggly tree had come to the end of its life because it hadn't produced fruit for four years. But this year we got a miraculous surprise. It's bearing hundreds of baby plums that promise to turn into the juiciest, sweetest, messiest fruit of the season.

Now it's your turn to tell me what's in bloom in your yard or patio.

Cheer Up!

I should be getting used to this by now, but these hospitalization postponements leave me lower than Paris walking the "red carpet" to county jail.

In the great scheme of things, a few days aren't going to make a bit of difference in my calendar or chemo, but it's a letdown just the same.

I may not be able to raise my blood counts, but I do know a sure-fire way to elevate my mood. On the way home from CoH, I stopped at Full House in Arcadia for a quick dim sum lunch. The frenetic, noisy pace and the tea carts filled with steamed, fried or baked delicacies snapped me almost instantly out of my slump.

Since I was by myself, two orders - baked pork cha siu baau and shrimp shumai (for a total of $3.60) - were enough to make a satisfying lunch. The restaurant provides a small dish of hot mustard and chilli sauce, but soy sauce is nowhere to be found. When I asked the waiter for soy sauce, he brought a bottle of the brown stuff AND a fork.

I wonder if asking for soy sauce in a dim sum restaurant is equivalent to wearing a sign that says "NEWBIE." It reminds me of the time I doused my Japanese steamed white rice with soy sauce at the home of the Dais, a Japanese family who took me under their wings nearly 30 years ago. They winked and poked one another with their elbows. "She's an American alright," they sighed. I never felt more insulted.

Since that moment, a drop of soy has not touched a grain of rice and never will. Have I committed the same faux pas by dipping my dim sum in soy mixed with hot sauce?

I contemplated this question while picking up fresh cream puffs at Beard Papa's. Judy first introduced me to these Japanese sensations in December, but I wasn't willing to drive to Hollywood and Highland as she did. Now there's no need since this latest location opened in Arcadia, bringing the total in California to 13.

What makes these cream puffs so special? The room-temperature puffs aren't infused with cold custard and cream until you place your order. At room temperature, the outside pastry, an airy combination of choux and pie crust, stays airy and crisp. For me, refrigerating a pastry is like, well, putting soy sauce on your rice.

Now I'm wondering if my sudden need for an afternoon nap was more about an overdose of carbs and fat and less about my cold.

(Do you know if soy sauce is a no-no in a dim sum restaurant? Do you have a favorite dim sum restaurant? Have you tried a Beard Papa's cream puff? What did you think? Do you think cream puffs will go the way of Crispy Creme donuts? Do you put soy sauce on your rice? What foods and/or restaurants are "mood elevators" for you? Please share the answers to these questions in the comments section.)

Another Postponement

I was filled with high hopes this morning when I went for my blood draw at the City of Hope - hope that my blood levels had finally risen and that I would be admitted for round four of chemo.

But a very slight cold was enough to knock my counts back down and I'm once again on hold for admission.

Dr. Forman confirmed that the effects of chemo are cumulative and, consequently, my blood is having a tough time recovering from the intense bombardment. I told him that my friends are worried that my activity levels are affecting the counts and are encouraging me to rest more. He very adamantly replied, "Your friends are wrong. It's the chemo, not your activity levels, that's responsible for your low counts. I'd much rather see you active like you are and leading as normal of a life as possible." See why I love my doctor?

The good news is that we'll be doing six rounds of chemo, not eight as originally explained to me by Dr. D. I've already reached the halfway mark! This means that I could be going in for the stem cell transplant (STC) as early as late July. Of course, it's hard to predict the exact date since the recovery times between rounds are now so uncertain. After round four, we'll redo the tests with the expectation that I'll be in full remission. Stem cells are collected after round five, and then I'll have the STC after round six.

All of this has gone better and faster than I ever dreamed.

But that "very slight cold" I mentioned is enough to make me unusually tired today, so I'm settling in for an afternoon nap.

Cancer Banter at the Car Lot

My gas-guzzling Audi station wagon has been sitting idle in our driveway since we purchased my Prius in January. On Friday, I decided to drive it to my City of Hope appointment so that I could get an appraisal from CarMax, which is just a few blocks away from the hospital.

When I turned into the CarMax driveway, a young man shoved a coupon through my car window and motioned for me to park the car in one of the available slots. I explained that I was interested in selling my car and was not in the market to trade or purchase.

I made the mistake of mentioning that we could be buying a car for our daughter in a few weeks, but not now. As he started the paper work for the appraisal, he asked if I drove a long distance to get to their lot. I told him that the location was very convenient because I was a patient at the CoH, just down the street, and had an appointment that morning.

A car salesman is always looking for an "in," something in the conversation that will establish a rapport, and he sensed that this was it.

"Oh, what kind of patient are you?" he asked.

Trying to be as vague as possible, I told him that I was a chemo patient.

"Oh, what kind of cancer do you have?" he bantered. And, just in case I had forgotten, he started listing body parts to jog my memory. "Like breast cancer or lung cancer?" If I said nothing, would he continue through Gray's Anatomy of the Humah Body?

I finally admitted that I have lymphoma. "Oh, yea, I've heard of that." And then, for the next ten minutes, he launched into the tale of his father, who's been undergoing alternative treatments for prostate cancer for nearly a decade. I'm usually interested in these stories, but this saga was stalling my car appraisal. I repeatedly moved my eyes from his to the blank boxes on the clipboard form, but he didn't get the hint.

He eventually asked, "Have you considered alternative medicine?"

I knew that there was no good answer to this question. It's like when a telemarketer inquires, "May I ask why you aren't interested?" Refuse to answer or, better yet, run for the hills. I finally answered, "Yes, but I decided to go the traditional medicine route," and then I headed for the nearest bench and plopped down.

Two older gentlemen soon joined the young man appraising my car. A few minutes later, he walked over and announced that they weren't interested in my car because it has too many miles. (Hmmm, couldn't this have been determined after like ten seconds?) He suggested a private party sale or CarMax or, better yet, a trade-in for a new car.

Wait a second. I thought I was at CarMax. The sales people all wore shirts the same color as the blue in the CarMax logo. "No, they're on the other side of the driveway," he explained. "But wait, before you go let me get my card so that you can call me when you're ready to buy a car for your daughter." My first instinct was to hop into the Audi and make a mad getaway, but I politely stood around for another minute while he got his card.

I started the appraisal process at CarMax, but didn't have time to complete it because I had an afternoon coffee date. I'll return on Monday, right after my CoH morning appointment, but I've learned my lesson. I won't be mentioning City of Hope this time.