No Parking Zone

Have you ever had the feeling that your life was parked in a no parking zone? By this, I mean that you found yourself stalled on the sideline in a place you didn't belong, but you couldn't go forward. Maybe it was due to a bad marriage, or a bad job, or a bad course of events that ensnared you. But whatever the reason, you just weren't moving ahead.

That's how this breast cancer experience is starting to feel, like being parked in a red zone, but being powerless to move on. Now that the calendar reads 2008, I can see that my 50th birthday is on the horizon, and I'd like to make some plans. But instead, I'm waiting for the results of the Oncotype Dx test, in order to resolve the chemo question, before the birthday planning begins.

This is vaguely reminiscent of a time when my boys were little. For a seven-year stretch, beginning when Joe was about 12 months old and lasting until Nick started kindergarten, I stayed home with them. During this phase, my job titles included wife, mother, chief cook, director of procurement, laundress, chauffeur, and pediatric nurse (in training). For the most part, I was happy not to have a paying job. I had traded sitting at a computer for standing behind a swing. Instead of discussing marketing proposals, or whatever I talked about in my former work life, I met with other mothers and strategized about entertaining a three-year-old, while balancing a baby on one's hip, while chopping an onion.

Mostly, I was content during those years, but I remember an occasional voice in my head that called for actual achievements. The snide voice rudely chided me for passing off the milestones of my kids as if they were my own. To shut this internal monologue up, I usually looked, half-heartedly, for free-lance work, and sometimes I landed a writing project. Having real-world work soaked up my excess energy for a time. The work also reassured me that my brain was still capable of doing more than recognizing all of the Sesame Street characters. But inevitably, with my deadline approaching, I was always forced to admit that I was spread too thin to add an employer into the mix. In short, I was parked in my house during those years, albeit for a worthy effort, while I watched other thirty-somethings race by in the fast lane.

Of course, this phase of parenting is well behind me now, and, in hindsight, staying home with the kids was absolutely the right decision for me. I expect that waiting another week more for these last tests results will also prove to be the absolute right choice. And what alternative do I have? Dive into chemo because I'm getting antsy, or wait for the data to make a reasoned decision. Hmmm. So for the moment, I'm idling in a no parking zone. Must be time for a big, thick, all consuming novel. Book recommendations anyone?

(I'll go first. The books listed to the right are all worthwhile reads.)

In With The New

Good news seems to be in short supply as we slide into 2008. Benazir Bhutto's assassination has led to more uncertainty in the Middle East. Global warming has led to an outbreak of tropical diseases in temperate places like Northeastern Italy. Finally, high-levels of pollution in Beijing have led to concerns about the potential world-class performances of the Olympic athletes who will arrive there next summer. (Maybe the real concern should be for the actual residents of Beijing, but since it would be bad manners for me to bring this up, we best move on.)

These worries are just the macro-level ones. We all have worries at the micro level, too. How do we pay the mortgage and the taxes? How do we keep the kids away from the gangs and the drugs? How do we, in good conscience, keep our lawns green and enjoy a long shower during a record-level drought?

For me, the pressing question of 2008 is how to attack the breast cancer and hold onto my hair. The first step was to decide on an oncologist, which I did. Let's call him Dr. G.

As I mentioned in the last blog, Dr. G is proposing a relatively new test, known as the Oncotype Dx, which can help us chart the remaining course of treatment. Specifically, this test is for women whose cancer has not spread to the lymph nodes and who test positive for estrogen. Since I fall into both categories, I'm a candidate for it.

Scientists who developed the Oncotype Dx were able to distinguish which women had a high, low, or intermediate risk of recurrence by studying 21 selected biomarkers they found in breast tissue that had been removed during surgery. According to Dr. Susan Love's Breast Book, concerning the Oncotype Dx test, "The recurrence score [from the test] was more predictive than age or tumor size. In fact, the [scientists] found some very small tumors that had a high chance of recurrence and some larger ones that did not." The makers of the test, Genomic Health, also showed that women who fell into the high-risk group benefited from chemotherapy, while the low-risk patients did not.

I agreed with Dr. G that he should order the test, and now we're waiting for the results. Given the holiday slowdown and a small health insurance hurdle, I don't expect to receive any data until the second week of January. So, keep sending positive thoughts that my recurrence score will be low. If I can score a low number (this is like golf), I'll have a legitimate, medical reason to skip the whole chemo thing. While my whining about the nasty side effects has drawn some sympathy, I can see that my loved ones aren't going to let me avoid the chemo, unless I have solid medical evidence in hand.

So while I await the test results and the approaching new year, here's my thought for all of us: Whether your concern stems from a global crisis, or a job crisis, or a health crisis, my wish is that we navigate the new year with less anxiety and greater hope for a better day ahead. To that end, I did find some good news in the paper today. The Los Angeles Police Department has been rescuing feral cats from local animal shelters and giving them jobs at various police stations. The police are providing the cats with food and shelter, and the cats are providing the police with protection against persistent rat infestations. This is a news story without bombs, bad air, or rising global temperatures. In this article, not even the rats are dying. Apparently the mere presence of the cats is enough to send the rodents packing. Go Kitty!

Happy New Year.

The Doctor Files

Tis the season for shopping, and I've been out seeing which oncologist was the best fit. Reader Warning: What follows is overly detailed, potentially boring, and embarrassingly self-absorbed. But it's my blog, so I've indulged myself. If you can bear with it, the comparative details show why doctor-shopping, if your insurance allows it, is a good idea.

Report on Oncologists

Dr. #1: A 35-year-old Asian woman practicing in a satellite office of a large oncology group. Presents as capable and concerned.
Opening move: Provided a detailed summary of my health history.
Analysis of my case: Even though this cancer is only Stage I, she strongly recommends chemo because of the disease's aggressive make-up. When asked about the 15% estrogen-receptor positive thing, she noted that this number was low, making me almost a "triple negative." This means that I was nearly negative for estrogen and also negative for progesterone and Her/2. She characterized a triple negative as bad, because doctors don't really know the cause of the disease or how best to attack it. Thus, she advises nuclear warfare, in the form of a witch's brew of chemo drugs.
Key talking points: Many brutal side effects accompany chemo, which she discussed in copious detail. But she and her team will help to mitigate them with other drugs.
Opinion on the close margins: Surgically re-excise now to remove any remaining pre-cancer before chemo begins. Don't rely on extra doses of radiation to fix the margins, which she considers too close for comfort.
View on hormone suppressants: Yes, after chemo and radiation are finished.
Surprise recommendation: Get a $3000 genetic test that will determine the presence of the breast cancer genes, even though I have no family history and fall outside of any genetically pre-disposed ethnic group. This test will reveal if my offspring are predisposed to breast cancer, and I will know how vigorously to pursue future testing for ovarian cancer.
Suggestions for my long-term overall health: Other than the genetic test, she didn't offer any.

Impression: While Dr. #1 was sincere, she was a conservative thinker. Possibly because she's a relatively young doctor, she relied on a textbook approach. I found her likable, but she also imparted a feeling of dread. This ominous mood was reinforced by the storm clouds that moved in during my appointment. This was an unusually foreboding afternoon for Southern California.

Dr. #2: A 40-something Latin American, who has retained much of his Spanish accent, practicing out of the Breast Center of USC/Norris. Presents as personable and engaging.
Opening move: Asked if I had any questions and wanted to know my general thoughts about chemo.
Analysis of my case: Before deciding about next steps, he recommends ordering a $3000 test called the Oncotype Dx, (this is different from the test that Dr. #1 suggests), which analyzes my excised tissues and provides a recurrence score. Studies show that patients with a low recurrence score don't benefit from chemo.
Key talking points: Brought visuals for me to take home and study. He had entered my parameters into a computer model that calculated risk of recurrence based on several post-surgical approaches, including no further treatment, treatment with only hormone suppressants and radiation, and treatment with newer chemo drugs.
Opinion on the close margins: Very comfortable with higher doses of radiation. Saw no need to re-excise.
View on hormone suppressants: Believes that a 15% estrogen number is not to be discounted. Said that too much estrogen is a factor here and that a hormone suppressant is the "cornerstone" of the treatment. Wants this treatment to begin either immediately, or when chemo ends.
Surprise recommendation: Suggests participating in a clinical trial to study the impact of osteoporosis drugs on breast cancer reduction. A long-term study in Europe showed that an osteoporosis drug also helped to reduce breast cancer recurrence. The FDA, not trusting the Europeans, wanted an American trial.
Suggestions for my long-term overall health: Sees a measurable benefit in a low-fat diet for breast cancer patients and recommends meeting with the staff nutritionist.

Impression: Provided the right balance of statistical analysis with a holistic approach. Also displayed a familiarity with European approaches, which was a plus. Had a cheerful disposition and a certain brightness about him. The previous day's storm clouds were still overhead, but I had shaken off the dread.

Dr. #3: Cancelling him and going with Dr. #2.

On The Road Again

A few of you have gently raised questions about my temporary treatment lull. You're right about the seeming inactivity, no x-rays, needles, or scalpels for almost a month. While no one has actually said this, I think that your questions reflect an anxiety that the villainous cancer cells, those that escaped the surgeon's hand, will regroup and set up new encampments -- sort of like the Taliban. Similar to the fight in Afghanistan, I sense that you want my medical team to be victorious, and you also want assurances. You want to know that the evil marauders, who had controlled certain mammary regions, have been stomped out. For good.

I understand, and share, the sense of urgency, but this process has its own rhythm. Unlike other health problems, breast cancer treatment moves at a steady, but far from frenetic, pace. For example, on the morning of my surgery, one of the radiologists asked me how long ago my condition was discovered. I told him that I found the growth about 10 weeks earlier, and he said, "Oh, you didn't lose any time at all." Since I had been thinking that 10 weeks from discovery to surgery was a little sluggish, his comments were reassuring and made me feel as if I were the paradigm of efficiency.

Anyway, things are moving forward again. Tomorrow and the following day, I have appointments with two different medical oncologists. Interestingly, none of the doctors I wanted to see had any available time slots during the first half of December. I understand now that the calendar crunch may have been exacerbated by the 2007 San Antonio Breast Cancer Symposium, which began several days ago. This is an important annual conference for anyone working in the field.

I expect that between the oncologists and the holidays (did I just put those two words in same sentence), the next two weeks will be busy ones. So right now, while I still have a quiet moment, let me take the time to say thank you. Thanks so much to all of you. Your e-mails, telephone calls, thoughtful gifts, cards, flowers, prayers, comments on the blog, and overall heartfelt concerns have meant more than you know. While my natural temperament is to stay on the sunny side, confronting this diagnosis is still a great big deal, and it's best faced with a group of caring supporters. I don't think that a day has passed since this chapter began without one or two of you letting me know that you're there. Your kind words and best wishes have helped tremendously.

I send each of you my thanks, my wishes for a happy holiday, and my toast to your good health.

Awareness

Nothing heightens one's awareness more than a first-hand encounter. Not surprisingly, I'm having a consciousness-raising experience around the breast cancer issue. Relevant headlines, and even small references, are grabbing my attention. During one recent week, I happened upon three different stories in the Los Angeles Times, all with breast cancer angles.

The first article was about two local high school students, Sarah Waliany and Shelina Kurwa, who were on their way to New York to compete as finalists in the Siemens Competition in Math, Science & Technology for their noteworthy research on breast cancer treatment. The students, who are cousins, discovered a gene strand that causes some women to be resistant to the drug Herceptin, which is used against certain types of breast cancers. When asked why they selected breast cancer research for their project, the girls said they became motivated after several friends' mothers were diagnosed. Whether or not these young women garnered a first place in the science competition, you have to applaud their efforts and be grateful that they're in the lab.

The second story was an obituary about the death of a high-ranking L.A. city official. (I'm not being morbid; I've read the obits for years.) She was stricken at age 55 by a particularly aggressive breast cancer recurrence.

A few days after seeing the obit, I noticed an article, buried on page 17, announcing that African American women, particularly those over 50, are at greater risk of developing breast cancer than previously believed. According to the report, "A growing body of evidence suggests that breast cancer tends to be much more aggressive and deadly among black women, which could help explain why they are more likely to die from it even though fewer of them get it."

After the third news reference, I started to make connections. Had the timing been different, could the high school students' research have impacted the treatment of the city official? Was the city official an African American woman, who could have been helped by more vigilant screening? Finally, why was the article about breast cancer risk among black women hidden on page 17, and not given more prominent placement?

My recent grasp of the breadth of this disease is not just coming from news reports, either. People are continuing to share with me poignant stories, mostly about their mothers or their mothers-in-law. Their experiences make me wonder about all of the sisters, daughters, and granddaughters, who know that their family histories place them at higher risk. Of course, none of us can take any real comfort in being outside a high-risk group. When women develop cancer, more often than not, it's in their breasts. According to the organization known as Susan G. Komen For the Cure, more than 175,000 American women will be diagnosed this year. With that many new cases, it's not surprising that even high school students are personally aware of women -- the mothers of their friends -- who are facing treatment.

If you're regularly following this blog, your consciousness has already been raised. But we need to take action, too. The truth about this cancer is that the screening methods are imperfect, and many cases go undetected until the disease is dangerously entrenched. Until we have reliable prevention methods, our collective voice is essential. We need to speak to doctors about better screening, to speak to government leaders about more research and funding, and to speak to each other about arming ourselves with greater knowledge. While only a few of us have the ability to create significant research, as the students did for the Siemens competition, everyone can find a way to contribute.

Reality Dose

I had a moment of clarity the other day. My husband Dennis and I went to see the radiation oncologist. Let's call him Dr. Rad. He was a somewhat thinner version of Barack Obama, with a nice smile and a warm manner. My background research also revealed that, in addition to his stellar medical credentials, he held a law degree from a top university. This was one smart guy.

After reviewing my medical records and completing a physical exam, Dr. Rad sat down with Dennis and me to talk about the close margin related to the DCIS, or the nagging pre-cancer problem. The conversation began innocently enough. Dr. Rad asked me to provide my understanding of my medical situation, and I succinctly laid out my case. He agreed that I was correct, and then he started to speak.

Slowly, the truth became evident. I was in a brave new world. In this land, no one approached problems like I did. These medical people were all analytical types, while I inhabit the other world, where creatures think intuitively.

The tip off was that Dr. Rad was laying out statistics and percentages, as if they had real value. Specifically, he said that he had just been to a conference where a case like mine was presented, in which a patient had clean margins around the tumor but close DCIS margins. Rather than re-excising, he said another approach was to increase the RAD dosage, which meant beaming more than the standard levels of radiation at me. At this point, he cited some probabilities and success rates. And then I was absolutely certain that I was no longer with my own kind, cognitively speaking.

Dennis, however, had perked up. A very analytical thinker, my husband appeared to be completely at ease and was offering his own thoughts and ideas. Meanwhile, I was curling inward a little and slipping down in my chair.

Granted, math is not my strong suit, and I admit that high school Algebra II got the better of me. I did manage a "B" in college statistics, however, so I do have the ability to do the analysis. But I just don't find the statistics very useful. Here's why: For purposes of discussion, let's say I stopped my treatment now. I could bet on the knowledge that I had no metastasis, that the surgeon removed the tumor with clean margins and, with luck, removed all the DCIS. Given that scenario, there is a chance that I may not have any recurrence. On the other hand, I could bet conservatively and elect to throw everything at this disease. I could have chemo, get radiated with higher doses, re-excise around the DCIS, and suppress my hormones. And yet, I might still suffer a recurrence. This all about betting, and I don't like Las Vegas.

Okay, okay, I hear you. The analytical readers are all protesting loudly and saying, if not by the odds, how does one make any medical decision? My answer is that I'm not sure. Maybe my problem -- or this could be my strength -- is that I always see the equation from a different angle. When Dr. Rad said that we could attack the margin problem with higher doses of radiation, my brain wasn't thinking about how much this improved my odds on the 10-year survival scale. Instead, my gut reaction was, "Can't we think of another medically sound approach that doesn't involve turning on the high beams?"

For me, the question is how will each component of the treatment interface with the other components. Specifically, how will the levels of radiation interact with the chemo (if it's prescribed), and how will the chemo interface with the hormone therapy, and how will the hormone suppressants affect the menopause situation, etcetera. It's not about how many thousand rads we're using, but about how the radiation piece contributes to the whole puzzle. It's the sum of the parts, baby.

Once the medical oncologist is on the team, my concerns here will probably diminish. I have a couple of consultations scheduled with oncologists in the weeks ahead, so the rest of December will be used to get a plan in order. I also understand that chemo precedes radiation, so the rad dosage discussion may be on hold anyway. In all honesty, I might have a different view about the statistical analysis, if I were not the patient. Since I'm the one who may be glowing, this is no longer an abstraction, but a high dose of reality.

Don't misunderstand. I'm most appreciative of this doctor's training and abilities, but someone has to have a holistic view. So as we proceed, my intuition is telling me to consider carefully all of the analysis and advice of the medical wizards, but also to finely tune my instinctive radar and not to discount its signals.

Adrift

Years ago, right around my son Joe's second birthday, I embarked on a mission to find the right pre-school for our family. There were many factors to consider -- the school's philosophy, the physical plant, the number of students, the level of parental involvement. The list was long. At that time in the early 1990s, the baby-boom generation was producing so many offspring, finding a spot for your child in a "good" L.A. pre-school was a highly competitive endeavor. And because I was probably a little underemployed at the time, I welcomed the challenge.

Using our combined charms, Joe and I secured a place in a hippie-style nursery school tucked into a grassy corner of L.A.'s trendy Silver Lake district. A serene, Japanese woman named Betty operated the school, and lots of laughing, precocious youngsters were under her tutelage. I was relieved and happy. Joe and I were no longer drifting. We had landed in a school where we could be ourselves, and Nick, who was then a newborn, could follow behind. Before I found this school, however, it occurred to me that I was overworking the problem, that I was behaving as if it were graduate school rather than a few hours of daycare. But in retrospect, my instincts were right. That little school had a huge influence on our lives and anchored us in many ways. It was Betty's advice I sought later when Nick took on the persona of an all-powerful toddler dictator. Some of the friends we met there, and many of the lessons we learned, continue to be part of our family today. It may have been just a pre-school, but it was an important place to learn.

This 1990s moment has been brought to you, because I'm having a distinctly deja vu experience. The current challenge is to locate a medical oncologist, and the search is dredging up that untethered feeling I had back then. Because of staffing issues, only one of the medical oncologists in the Breast Center at USC/Norris is taking new patients at the moment. So I'm interviewing the Norris doctor and another female oncologist in Pasadena, and I'm talking to people for other referrals.

From what I'm told, the medical oncologist plays a vital role in the patient's long-term care. The oncologist tracks you for years to come, and is at the forefront of the fight to ward off recurrence. The doctor-patient relationship matters here, as evidenced by the terms people use when referring to these specialsts. One friend told me that she believes her mother's oncologist for breast cancer "walks on water." So you get the sense that this is an important relationship. (I looked up the water-walking oncologist, and he is at least a decade older than I am, which makes him too close to retirement for serious consideration.)

At the outset, the medical oncologist will provide a context for my hormonal study, which I received yesterday. The study showed that I was estrogen-positive and progesterone-negative, and for the advanced readers, my Her-2/neu receptor was not amplified. Quick explanation of Her-2/neu: Instead of being hormone-driven, about one-third of invasive breast cancers develop because oncogenes, which are tumor genes present in our bodies, start to send out devious messages telling cells to grow uncontrollably. But the Her-2 thing is not my situation. While I believe that it's a good sign that I'm estrogen-positive, since drugs can suppress it, the hormonal study marked the estrogen number at 15%. At this writing, I have no idea what that percentage means. I need the expertise of a medical oncologist.

Later today, I will see the radiation oncologist, so we are moving forward on that front. And once I get the medical oncologist on board, I expect that my feeling of being at sea will subside. For now, I keep repeating the advice I learned from the sage Betty, "This, too, shall pass."