Go Back Three Spaces

Remember the setbacks intrinsic to board games. Players are sent back three spaces, or maybe they forfeit a turn simply because they landed on the wrong square or drew the wrong card. In the overall rhythm of the game, these impediments are never really catastrophic, but they trigger a keen sense of frustration nonetheless.

I had a similar setback earlier this week. My radiation treatments, scheduled to begin during the last week of April, were taken off calendar, and I was sent back to the breast surgeon to discuss re-excision. Before I explain further, let me assure those who are quick to worry that my health status has not changed in the slightest. No new or bad facts have presented themselves. This week's shift in treatment reflects nothing more than a change in thinking about the next step.

If you've followed this blog for awhile, you may remember that, based on the pathology report following my surgery, the breast surgeon achieved a "clean" margin around my invasive cancer, but only a "close" margin around the pre-cancerous condition (known as DCIS). While achieving a "close" margin is not as bad as a "dirty" margin, the downside is that close margins leave lingering doubt -- maybe all of the DCIS was removed, but maybe it wasn't. Close margins call for additional medical intervention. Depending on each patient's circumstances, they are either rectified by the surgeon, who removes a little more tissue during a re-excision, or by the radiation oncologist, who increases the radiation dosage to kill off any unwanted cells that the surgeon missed.

In my case, the breast surgeon instructed me to discuss the margin problem with Dr. Rad, which is my nickname for the radiation oncologist I'm seeing. At the time, which was back in December, Dr. Rad was confident that by increasing the radiation levels, he could eliminate any remaining bits of DCIS. My reaction to this idea was tepid at best. From a holistic viewpoint, I was a little hesitant to let Dr. Rad dial up the dosage, but I was the only one who balked. The rest of my team -- the medical oncologist and the breast surgeon -- all concurred with Dr. Rad and green-lighted this plan. Since I lack an M.D. after my name, arguing with three medical experts seemed pointless. I acquiesced and agreed to return to Dr. Rad after I concluded chemotherapy in order to begin super-charged radiation treatments.

But this week, when I showed up for a pre-radiation planning session, Dr. Rad looked at my chart again and changed his mind, although not for medical reasons. He cited my age and said that he was reluctant to proceed because he didn't want me to be unhappy with the cosmetic results of extra radiation. To be honest, the picture he painted was not a pretty one. Given that I was never fully invested in the extra dose idea anyway, he didn't have to say much before I agreed to inquire further about re-excision. Two days later I was consulting with a breast surgeon, although not the same one who performed my original procedure since that doctor has since relocated, but everything still fell easily into place. The new surgeon believes that by re-excising, he can both rectify the margin problem and give me a better cosmetic outcome than radiation would impart.

Even though I think I'll be happier in the long run by following this course, the delay is still frustrating. I want to reach the finish line, and I don't relish being sent back 3 spaces. The re-excision is scheduled for next week, and radiation is set to begin at the end of May.

As a kid, I always enjoyed board games, and I good-naturedly weathered the inevitable lost turns or directives to retreat a few squares. At least that's how I remember the long summer days I spent playing Trouble or Parcheesi. This experience, however, is testing even my patience. I want to get to Candyland. Now.

Three Seasons Later

Done. Done. Done with that!

Chemo is finished, thankfully, and I owe some words of appreciation to those who so kindly extended their help. To my husband Dennis, to BK, and to TB, thanks so much for chauffeuring me on chemo days. Also, many thanks to EQ for stopping by to visit during my treatments.

I'm also very grateful to my lunch/coffee buddies -- JB, BE, LR, MB and BP. You've brightened my mood over many meals and continued to assure me that my bandanna was fine. Really.

Thanks, Mom, for the meals. And thanks to everyone for your extended support over these long months since I was first diagnosed. Your kind thoughts have arrived in many forms -- e-mails, blogposts, telephone calls, greeting cards, floral deliveries, prayers and, yes, even mental telepathy. I know that you're thinking of me, and that knowledge has helped to propel me forward with my good spirits mostly intact.

My first radiation planning session is scheduled for later this week, when I will get some better information about the final phase of treatment. This breast cancer ordeal, which began last September with a peanut-sized mass palpable under my skin, will wind down in the not-too-distant future, and I will shift into a maintenance mode. Since embarking on my detour, a Halloween, a Thanksgiving, a Christmas, and an Easter have all been celebrated. A once obscure politician, Barack Obama, now has instant name recognition.

This past weekend in Los Angeles, the weather was more akin to July than April, the tomato plants were beginning to flower, and people's conversations were drifting toward graduations and vacations. Summer will circle around again soon, and I will return to days without cancer treatments.

The life I resume, however, will not exactly be the same as the one that I led a summer ago. I'm no longer the same. How could I be?

In the Name of Science

Fourteen days have passed since my final round of chemo. For the first time in 11 weeks, I feel that I'm at a point where I can begin to rejuvenate from the treatments.

While my energy level is far from normal, I'm also not as fatigued as I have been. That said, at the end of April, I'm scheduled to begin radiation, which also imparts a cumulative weariness in patients. Knock you down, let you build back up, and knock you down again. Add to the fatigue level varying amounts of hair loss, nausea and low blood counts. Indeed, the cancer treatment cycle is vicious, but so are those nasty cancer cells. Doctors are only trying to match the correct level of firepower to the perceived level of threat. The side effects are so much collateral damage.

Thanks to the sacrifices of a group of laboratory mice, however, some of chemo's negative impacts may be a thing of the past. A joint study, conducted by USC/Norris and the Giannina Gaslini Institute in Genoa, recently showed that by starving mice for a few days before their chemo treatments, the rodents avoided some of chemo's debilitating side effects. The researchers believe that healthy cells, when deprived of nourishment, stop dividing in order to withstand the stress. Cancer cells, however, respond differently and continue to divide, even when they are not getting proper sustenance. Since chemo only attacks dividing cells, the researchers believe that patients may be able to ward off chemo's ill effects if they forego food for a few days before treatment.

In this particular experiment, 28 mice received only water for 48 to 60 hours preceding treatment. Only one mouse out of the 28 who fasted did not survive the experiment. Meanwhile, another group of 37 mice ate normally before their chemo treatments, yet 20 mice in this group perished. Interestingly, the survivors in the group who fasted showed no visible side effects, while the remaining mice in the group who ate became sluggish and had ruffled fur. All of the mice were given the drug Etoposide, at levels three times the maximum human dose.

The results appear promising, and a clinical trial is expected to begin later this year to test this theory further. Until more is known, however, Valter Longo of USC, the director of the study, warns chemo patients not to fast before their treatments without instruction from their doctors.

While Longo and the others behind this study will undoubtedly get all the praise, the mice are the true unsung heroes. Out of the 65 mice who began the experiment, 21 are no longer with us. Now that's a hazardous job, and it brings to mind all of the laboratory rodents who work to further our understanding in so many fields of study. If I had hair, I'd tip my hat to those furry little creatures. Instead, I'll raise my glass. Here's to lab rats and research mice everywhere. Your efforts go largely unnoticed, but your contributions are immeasurable.

Dem Bones, Dem Bones, Dem Dry Bones

I wanted to share some of the feedback I've received on my clinical trial question.

Generally, people have asked whether I can replicate the benefits of taking the osteoporosis drugs by improved diet and exercise. My sense is that a targeted diet and exercise regimen would help to prevent osteoporosis, but I'm not sure it would be as beneficial as the drugs in warding off a recurrence of breast cancer.

Our bones are constantly regenerating. Old bone is broken down by cells called osteoclasts (the demolition teams), and new bone is created in its place by another group of cells, the osteoblasts (the construction teams). This process keeps bones strong and flexible. As we age, and lose estrogen, however, the demolition teams outpace the construction crews, resulting in bone loss. Genetics, diet and exercise all influence this balance.

This process is further complicated when breast cancer cells show up at the construction sites. Once they enter the bone marrow, breast cancer cells indulge their destructive natures and habitually sign on to the demolition parties, which just can't be a good thing. As I understand it, osteoporosis drugs, or bisphosphonates, work by interrupting the relationship between breast cancer cells and the osteoclasts. Doctors already use these drugs to treat metastatic bone cancer. The two-fold question being investigated in the clinical trial is, first, whether bisphosphonates will help to prevent breast cancer recurrence, as the European study showed, and, second, which drugs and dosages are most effective.

Elizabeth Edwards's story is a good case to consider. After her initial diagnosis in 2004, she underwent surgery, chemo, and radiation, although not necessarily in that order. Most women who follow this treatment remain cancer free. Three years later, however, she learned that her breast cancer had metastasized to the bone. The question for the researchers sponsoring the clinical trial is could she have avoided the involvement of her bones had she taken bisphosphonates in 2004 as an on-going part of her treatment?

Although I'm not completely sure of this, let's assume that diet and exercise can generate bones that are strong enough to inhibit cancer cells from entering them. That would be a real plus. However, in the event that a few cancer cells survived the chemo/radiation and did find their way into the bone marrow, it seems too late for diet and exercise to have any benefit. Since bone is the most common site for breast cancer metastasis, researchers are hoping that bisphosphonates will deter cancer cells already in the skeletal system from making it their second home.

Another point that you've raised in e-mails is the type of bone that bisphosphonates create. Because these drugs work by inhibiting the osteoclasts from breaking old bone down, the resulting bone may be denser, but it's also old and brittle. Bisphosphonates don't generate the new, flexible bones that osteoblasts build naturally, which may explain the problems that some women have experienced with their jaws.

Finally, I've been asked to consider the holistic effect of all of the forms of treatment I've completed or will eventually complete -- surgery, chemotherapy, radiation, estrogen suppressant -- plus the possible addition of bisphosphonates. What is the cumulative impact of all of this? This is a good question for the oncologist, but I'm not scheduled to see him again until the end of April. We will also do the bone scan, or DEXA study, then. Meanwhile, I'm moving ahead with the planning sessions to get radiation underway.

I still have a little time to think about the clinical trial, and I'm finding your e-mails and comments very helpful. Your questions are pointing me in new directions and giving me new angles to consider. It's no secret that I thoroughly enjoy delving into a topic, so keep the feedback coming.

Trial Behind, Trial Ahead

I'm collecting the high fives now, if you please. My last round of chemo and my final injection of Neulasta are behind me. I face three weeks of recovery from this latest round of drugs, and then I can officially close this chapter of treatment. What a relief!

My medical team seems to think that I weathered chemo well. During my check-up, the nurse noted approvingly that I both fended off nausea and retained my eyelashes. While I'm pleased to have been a gold star patient, I'm ready to part ways with the intravenous drugs. Indeed, the only injection system that I want any proximity to at the moment is the one that regulates the flow of fuel in my car. Unless....

And this a big unless. I'm currently weighing whether to participate in a clinical trial sponsored by the National Cancer Institute, which includes the possibility of receiving several IV drug doses over the next three years. Since I'm not sure how to proceed, I hope that you'll bear with me while I publicly gnaw on my decision here.

The trial, which is being carried out at cancer centers across the country, looks at the effects of three different osteoporosis drugs on preventing bone metastases in women with breast cancer. Bones are the most common site for breast cancer cells to migrate. An earlier study, conducted in Europe, has already shown that one osteoporosis drug -- Clodronate -- had a positive impact on reducing metastatic bone cancers in patients with early-stage breast cancers. Presumably this outcome was because stronger bones are more impenetrable to cancer cells than weaker ones. Now, U.S. researchers want to compare Clodronate to two other drugs -- Ibandronate and Zoledronate. Six thousand women are being recruited for this three-year study, including me.

All of this sounds fine. However, no drugs are free of potential side effects. Osteoporosis drugs fall under the pharmaceutical group called bisphosphonates. Basic Internet research turns up articles from all corners of the globe citing correlations between bisphosphonates and incidents of serious problems in the jaw bone. Although these complications are rare, bisphosphonates may trigger "osteonecrosis" of the jaw, which means that the cells in the jaw bone die off causing permanent damage and significant dental problems. This side effect occurs more often in one of the study's three drugs, Zoledronate, which is given intravenously. The two other drugs are given orally.

This clinical trial is double-blind one, meaning that neither the participants nor their doctors know to which prong of the study they will be assigned. Thus, every one has a one-third chance of landing in the Zoledronate arm of the study and thus assuming the greater risk of the potential jaw problems. Since USC/Norris is a research center and one of the study sites, I've been approached several times about my willingness to participate, and I've yet to give a definitive answer. I have until the end of May to either opt in, or skip the whole thing.

Usually a decisive person, I'm stymied by this choice. On the one hand, I tend to believe I would benefit from the Clodronate in a couple of ways. Since I have no reason to distrust the results of the European study, I would receive its assistance in warding off future breast cancer problems. Also, given my fair skin and small bone structure, I am definitely an osteoporosis candidate, so the Clodronate would also pitch in on that front. Finally, a voice in my head keeps whispering to me about the inherent rightness of stepping up when one is called upon to make a contribution to the greater good.

On the other hand, who wants problems with their jaw bones? While I'm not afraid of needles, I don't really welcome periodic doses of a strong intravenous drug over the next three years.

So, what to do? When faced with a decision that lacks an easy answer, my habit is to look for a piece of evidence that will tip the scale one way or the other. To this end, my oncologist has scheduled a bone density test to see if I have any evidence of osteoporosis now. The bone density test is a pre-requisite to participating in the clinical trial anyway, so I'm proceeding with the preliminaries without yet committing.

Feel free to share your thoughts here. While this is my decision alone, I'd welcome your input, so post comments or send e-mails. Clinical trials conducted on actual people are one way we gain knowledge. But they're not without some risk.

I can anticipate a couple of questions you may already have, so let me sort those out now:

1. Why not just take the Clodronate and skip the clinical trial? I posed this question, and my doctor's answer was only if my bones currently showed evidence of osteoporosis. The FDA has only approved Clodronate to treat osteoporosis, so he can not ethically prescribe it to a patient without evidence of bone loss. The results of the European study showing Clodronate's positive impact on breast cancer have not been replicated in the U.S., and the FDA has not adopted them.

2. Can I pull out of the clinical trial if I land in the Zoledronate group? Technically, yes. The study does not require a legally binding contract. But that's not my style, and I'd rather not be disingenuous with the researchers at USC, where I'm a patient. Either I commit fully to the study, or I skip it. That said, if I developed some problem during the study, I would, of course, step out.

Any thoughts?

Scenes From The Chemo Ward

At USC/Norris Cancer Hospital, patients check into Day Hospital for their chemo treatments. You may be imagining a foreboding place populated by really sick people. I pictured a darkened room where everyone was incapacitated because of nausea. But my preconceived notions were just wrong. Let me draw you a more accurate picture.

Instead of beds, Day Hospital is furnished with about 25 blue barca loungers. The room is bright with a large bank of windows, and the nurses are both cheerful and competent. Patients are assigned to a blue recliner, where they put their feet up, cuddle into a light blanket, and idly pass the time. Some people bring laptops. Others doze, read, listen to IPODs, or chat with the person in the adjacent recliner. Meanwhile, their IVs do the heavy lifting and control the steady drip of drugs into their veins.

What is striking about Day Hospital is that there is no single characteristic that typifies a cancer patient -- not gender, not class, not race. Not even age is a reliable indicator, since some patients have been surprisingly young. Over the course of my treatments, I've exchanged smiles with a business woman in her fifties, who was working industriously on her laptop. I've observed a man in his forties, who napped while his wife patiently sat reading beside him. And I've eavesdropped on a couple in their sixties, who were frantically working their phones to rectify a lapse in their health insurance coverage.

On my last visit to Day Hospital, I chatted briefly with an elderly woman who was talking to everyone who walked by her chair. Dragging my tethered IV stand with me, I walked over to her to ask about her elegant knit cap. I was curious if she had stitched it herself. A flattering shade of green, the hat sat perfectly on her head, falling just over her ears and low on her forehead, but still allowing her luminous blue eyes to peer out. In response, she proudly told me that her daughter had knitted several such caps for her in advance of her hair falling out.

In turn, she asked me about my eyebrows. She wanted to know whether I had I lost them and then had re-grown a new set, or if I was still holding onto my original pair. I happily answered that I was still holding onto my pre-chemo brows, as if this were an achievement for which I could actually take credit. She confided that her brows had vanished, but she had since grown a new set. We chuckled together at the indignities. But as I went back to my own recliner, I had a twinge of worry about her. Despite her gregariousness, she appeared frail and was getting a blood transfusion while we talked.

For the most part, though, people have not seemed that sick. Their demeanors have been normal, and as far as I can tell, people are eating. Most patients have readily accepted the nurses' offers of sandwiches or soup. I heard one man even ask if he could have a bottle of Dos Equis with his lunch. The nurse replied, "What?" He repeated, "Dos Equis." Again, she said, "What?" On his third try, he said, "A bottle of beer." The nurse responded, "Oh, if you had said cerveza, I would have understood." Undeterred, the man said, "Well, can I have a cerveza?" "No" was her answer, but she did bring him a coke.

Chemo, it's just not what you expect.

Too Bare To Bear

Women with fair skin are not meant to be bald. Trust me on this.

People have visibly winced or gasped when I've revealed this next little secret, but, honestly, I haven't looked at myself in the mirror with my head uncovered for about five weeks. "How do you tie on your bandanna?" they ask. No problem. I wrap it around my head, off-frame. Then, with my scalp safely hidden, I step in front of the mirror to make final adjustments. This regimen has worked fine. Really.

After three rounds of chemo, one doesn't need a visual confirmation to know what lies beneath the scarf. My head undoubtedly resembled the noggin of a much abused rag doll, the kind with the patchy coiffure. So, on Sunday, when no other clients or staff were in the salon, I had Jay, the ever-dependable hairdresser, take a shaver to the loose strands. Mind you, I made him swivel the chair 180 degrees, so that my back faced the mirror for this operation.

Then this morning, I got up my gumption and peeked at my reflection. Let me say that I was right before. Some images are best left to the imagination, and scalps that have never seen the sun have no business being exposed. With my final chemo cycle scheduled for the last week of March, I'm hoping that I can achieve a fine covering of fuzz by mid-May. Just in time for summer.

The good news is that, except for a diminished energy level, I haven't felt that bad. I do admit to having a little trouble in the kitchen, however. Chemo has caused my taste buds to go off kilter, particularly in the salty ranges. But I enjoy cooking so much that I haven't stopped. My husband and son, who are always grateful for whatever food I prepare, have assured me that my meals are still up to par, even if nothing tastes quite right to me.

Thankfully, the end of this chemo trip is starting to come into focus, and it couldn't arrive too soon. By the middle of next week, when I undergo my last treatment, I'll only have to sustain the final three-week recovery period. Knowing that the debilitating drugs are behind me, those days will most assuredly zoom by.