Mind And Body

It's Not About the Bike: My Journey Back to Life is Lance Armstrong's account of his struggle against advanced testicular cancer and his subsequent successes in the Tour de France. In the book, Armstrong takes the reader through his early years as a cyclist, through his devastating cancer experience, and finally through his rise, phoenix-like, to the pinnacle of his sport.

Armstrong's theme, which he hints at in the book title, is that he succeeded in the grueling Tour de France partly by drawing on the lessons he learned in his fight against cancer. Armstrong's disease was quite advanced when it was discovered, having reached his brain and other vital organs, and his survival is indeed miraculous. He contends that his illness changed him both psychologically and physically, which worked to his advantage as an athlete. He notes that cancer helped him grow into a more mature, less cocky cyclist. Physically, Armstrong said that his post-cancer physique was leaner, which allowed him to attack the hill-climbing components of the sport more efficiently since he was carrying less bulk.

Although Armstrong goes through a period of aimlessness following his treatment, which he refers to as "survivorship,'' he mostly maintains a positive attitude throughout his cancer ordeal. What is interesting, however, is how he characterized the mental components of illness and recovery. He writes: "I believed...in the doctors and the medicine and the surgeries.... I believed in the hard currency of... intelligence and...research." But Armstrong also noted that he "believed in belief, for its own own shining sake."

He decided that belief in something was preferable to belief in nothing and eventually arrived at the following conclusion: "I didn't fully see, until the cancer, how we fight every day against the creeping negatives of the world, how we struggle daily against the slow lapping of cynicism. Dis-spiritedness and disappointment, these were the real perils of life, not some sudden illness or cataclysmic millennium doomsday."

Dr. Bernie Siegel has also written about illness and positive thinking in several books, including his bestseller, Love, Medicine and Miracles. Dr. Siegel was not really on my radar, but another woman with breast cancer told me that she found his book helpful. So I listened to an Internet radio broadcast in which he focused on breast cancer. For those who are interested, here is the link: http://www.blogtalkradio.com/breastcancerwellness/2008/02/19/Love-medicine-and-miracles-for-breast-cancer-survivors

In short, Dr. Siegel advises patients to empower themselves in many ways: to be proactive in their treatments and to take charge of their lives. He teaches people to use positive messages, imagery, and humor to aid in healing. Dr. Siegel also believes that many of us carry emotional baggage from our childhoods with us, which can lead to illnesses.

While I agree that a mind-body connection exists (anyone who has blushed with embarrassment knows this to be true), Dr. Siegel and I part ways at the idea that one's unresolved emotional issues can morph into cancer cells. Many theories exist to explain the growth of cancer cells, including exposure to toxins, hormonal imbalances, genetic pre-dispositions, and poor diet. Scientists don't fully understand all the underlying causes, but I'm skeptical of the theory that holding a grudge against one's parents is a cancer catalyst. A similar theory, which some authors have floated, is that women bring on breast cancer by being passive and "bottling-up" their emotions in their chests. This idea is ridiculous, and only casts blame on those who are unlucky enough to develop a lump in their breast.

The truth is that well-balanced, fully expressive, upbeat people get sick, too. One of Lance Armstrong's physicians, Dr. Einhorn, spoke to this point in the following observation: "I've seen wonderful, positive people not make it in the end. And some of the most miserable, ornery people survive to resume their ornery lives."

The trick of illness is not to be emotionally defeated by it, but to learn how to use its lessons to a later advantage. Lance Armstrong took the idea of the mind-body connection to the extreme and conquered the Tour de France. He also started a major cancer fundraising organization. But small efforts are good, too. This weekend, I went to Bikram Yoga, a 90-minute yoga class held in a room heated to 105 degrees. Yes, you read that right. It was definitely hot, but I persevered and felt pretty good at the end. I also start radiation in a few days. At the beginning of this detour, I might have had some trepidation about being radiated, but not now. I've vanquished chemo and survived a session of Bikram yoga. How bad can radiation be?

Pack Mentality

Exactly two months after my last chemo treatment, my hair started to grow back. Rather than being stark white, my scalp is mostly covered in a very Nixonian five o'clock shadow -- a foreshadow, if you will, of hair to come.

While I'm finally able to look at my bare head in the mirror without gasping, I still haven't let anyone else see me like this. I keep my head covered at all times, even around the house, and even while I'm sleeping. My head has an alien quality to it, which is just too much to share, even with those who are closest to me. My look undeniably screams cancer patient, which is what I am. But why hammer the point home.

On an airplane recently, I sat next to a young man, who had absolutely no hair on his scalp or on his arms. I wondered if his condition were permanent and what had caused it -- childhood illness, congenital condition, heredity, or pharmaceutical side effect. The average person has about 100,000 hairs on his or her head. This fellow had zero.

Sitting next to this man triggered my thinking about appearance and image and why they carry so much importance in our culture. It's not just hairlessness. Consider the fat kids who are teased by their peers, or the morbidly obese adults whom we privately judge. Think of Michael Jackson and his skin condition or the people who are either extremely short or extremely tall. None of these physical traits goes unnoticed. While these characteristics are involuntary, many people intentionally alter their appearances in dramatic ways -- multiple piercings, extensive tattoos, outlandish hair and dress.

After mulling on this for a bit, I came around to this conclusion: Appearance is such a fundamental core concern that it's probably linked to an anthropological need to be part of the pack. We're just like the canines. The kids who demand the expensive tennis shoes, and the gang members who wear specific colors are acting on the same basic pack mentality. Even those who opt for multiple tattoos and piercings are still signalling their membership in a sub-group (sub-pack?) of non-conformists. When you get down to it, aren't skin-deep differences, when paired with fear or ignorance, the recipe for racism, which is really just pack behavior gone bad.

So my horror at being a hairless female likely stems from a deeply held human characteristic that both urges us to project health and vigor and to keep our appearance within accepted norms. No one wants to be the sick dog with the bad fur. It also explains the wig issue. During this cancer experience, many people have gently suggested to me that a wig was the perfect solution. I understand their thinking to some degree because a wig would shield me from public scrutiny, essentially allowing me to appear normal and avoid inquires from the pack. Honestly, if I were in a situation in which I wanted to hide completely the fact that I had cancer -- say, I had a customer-service job or lots of interaction with young children -- I would have considered wearing a wig. But a wig is a band-aid at best. It may blanket the evidence of illness, but underneath the wig, you still have no hair. In the mirror, you're still the sick dog with the bad fur.

Unfortunately, chemo is often the only effective treatment for cancer, and hair loss is collateral damage. So you cope as best you can because you really have no choice. And you laugh at yourself for being happy because you have a five o'clock shadow on your head. It signals how far you've come. It signals an approaching return to health and vigor.

The Radiation Question

Maybe it's me, but meeting with doctors to get one's questions answered can be tricky. The information is complex, and sometimes physicians just don't understand what you really want to know. Should they dumb it down for you, or do you have enough background to make sense of the textbook answer.

The problem is two-fold. One, when we talk to our doctors, we're usually not displaying our best selves. The format of doctors' appointments, and the anxiety that accompanies them, prevent us from being on top of our game. As a result, doctors may not get a true sense of who we are, at least not initially. Two, doctors have a history of being a little superior. While the profession has worked to reduce the egotism and improve patient communication, evidence of doctors' loftiness is still apparent.

Consider the wardrobe problem. While having serious conversations with physicians, I'm often wearing an ugly hospital gown that is exposing my bare back. Not my best look. The doctor, however, is usually dressed professionally and sporting a bright white lab coat with his or her name embroidered on it. As patients, our forefathers must have been really ill to let this imbalance get established. Would you go to any other meeting only half-dressed and wearing a hideous shade of green or an unflattering hue of blue? I didn't think so.

Second, the doctor's name on the lab coat is always followed by the capital letters M.D. Since it's a pre-requisite for physicianship, I just assume that they graduated from medical school. Why do they need to wear their credentials on their coats? Others with advanced degrees don't wave them around so openly. I fully accept that doctors are better at science than I am. That's why they make the big bucks.

Given the considerable differences between us, maybe patients and doctors should spend a little time getting to know each other at the outset in order to establish a style of communication. I recently found myself talking to the radiation oncologist again, as I tried to get a treatment question answered. After a minute or so of conversation, my background as an investigator emerged and took over the questioning, because I just couldn't get the answer I wanted -- mostly because the doctor and I needed to get on the same page.

My question was this: Why does a patient still require radiation if she has already undergone surgery and chemotherapy and achieved clean margins? Here's how the conversation went:

Setting: Little exam room. Doctor has just completed a brief physical exam. I'm sitting on an examination table wearing faded blue, oversized hospital garb that keeps coming untied. Doctor is sitting straight and tall on a stool wearing a pressed dress shirt, tie, and a very clean white coat.

Doctor: Everything looks good. Do you have any questions about radiation?

Me: I do have a lingering question. I've had surgery, chemotherapy and a re-excision. Tell me why I need radiation, too?

Doctor: In the old days, every woman with breast cancer was given a radical mastectomy. This was very disfiguring, so doctors moved away from this practice. Now we try to remove just the diseased tissue and then treat the breast with radiation. Because you didn't have a mastectomy, you need radiation. It's the standard of care.

Me: I understand that it's the standard of care. But why?

(Doctor's cell phone rings. He fishes for the phone in his pocket. Doctor looks at caller ID, answers the phone, and says "I'll be right there." He turns his attention back to me.)

Doctor: We find that radiation reduces recurrences that occur at the site of the original cancer. Women who have had surgery and radiation do much better in the long-term than those who only had surgery.

Me: But if women have had chemo, why do they still need to be radiated. Why isn't chemo enough to kill any remaining cancer cells in the breast?

Doctor: Chemo is more effective at reducing metastasis in other parts of the body. Radiation kills the dividing cells in the breast.

Me: But why? Doesn't chemo work the same way as radiation-- by killing dividing cells.

Doctor: That's correct. Chemo and radiation work on the same principle. They both destroy dividing cells, but they attack them differently.

(Doctor's cell phone rings again. He answers it, saying with slight impatience, "I'll be right there." He again turns his attention back to me.)

Me: You need to go. I'm keeping you too long.

Doctor: No, they can wait. Do you understand what I'm saying?

Me: I understand the words that you're saying, and I know that radiation is the standard of care. But I'm still not clear on why chemo doesn't do the job. Why do we have to bring in the radioactive substances if I've already had four rounds of chemo?

Doctor (looking like he is out on a limb): Because surgery has changed the vascular structure of the breast, so chemo may not reach the cancer cells there.

Me (cartoon-type light bulb over my head illuminating): Oh!!! It's a highway construction problem. Maybe the chemo drugs can't get to the cancer cells in the breast because surgery has realigned some of the veins. Essentially, the roads may be bad.

Doctor: Yes. Also, there are lots of cancer cells at the actual disease site, so surgery may not remove them all and chemo may not kill them all off. Radiation provides extra protection and helps to prevent recurrence.

Me (appreciatively): Thank you. Now I get it.

Doctor (looking relieved): You're asking the types of questions that medical researchers ask. Scientists want to know why one treatment works better than another treatment or a combination of treatments. I'm going to download some information for you from the Internet.

Me: That would be great. Thank you.

To his credit, this doctor did not leave the room until I was satisfied with his answer. He could have used his ringing cell phone as an excuse to exit, but he didn't. And for that, I was grateful.

Family Tree

Although I have yet to face my oncologist with this decision, I told his nurse practitioner that I'm declining the invitation to become a human test subject. I've decided against joining the national clinical trial researching the impact of osteoporosis medicines on reducing breast cancer metastasis to the skeletal system.

No single fact tipped my hand. Rather, the cumulative bad news concerning these drugs, known as bisphosphonates, weighed too heavily against their possible benefits, at least for me. First, their potential to destroy the jaw bone irreparably, while a statistically rare side effect, was still a frightening one. Moreover, anecdotal evidence about the jaw problem just keeps surfacing, making me question how rare this side effect actually is. Meanwhile, this class of drugs has been linked to other health problems. Just last week, one such drug, Fosamax, was blamed for incidents of irregular heart beats. Additionally, in January, the FDA issued a warning advising that Fosamax and other bisphosphonates marketed as Boniva, Reclast, Zometa and other labels may be responsible for a sudden onset of musculoskeletal pain. That's three medical complications l'd like to avoid, but who's counting.

My overall bone health is still a question mark. With last week's surgery, we delayed the diagnostic bone density test. If my bones are crumbling, I may have to take bisphosphonates anyway, but at least my doctor and I can select the specific drug and dosage, rather than being constrained by the protocols of a clinical trial.

Genetics, of course, plays a big role here, and I don't know of any family history of osteoporosis. But you're never completely certain that a grandparent or great-grandparent didn't suffer from a particular health problem. Case in point: Since learning I had breast cancer, I've been telling doctors that I have no family history of the disease. That was before the postman brought a card last week from my Aunt Sallie. In her mid-eighties, Sallie is my father's eldest sister. She lives in Colorado with their third sibling, my Aunt Mary Jeanne. Both of my father's parents were deceased before I was born. Growing up, I rarely saw these aunts, and I know very little about my father's branch of our family tree.

So I read with great interest Sallie's information that my paternal great-grandmother died of breast cancer. Unfortunately, this nugget was the sum total of what Sallie revealed about her. Since she was a great-grandmother, and thus a few generations removed from me, I don't know how medically significant this fact is. But my curiosity is still peaked. What was her maiden name? How old was she when she died? What was her ethnic background? Where was she born?

Each of us is the amalgamation of so much genetic code. Beyond the color of our eyes or the texture of our hair, our forefathers give us a propensity for so much else -- from heart disease, to blood disorders, to alcoholism, to longevity. Learning their life histories can be fascinating from a self-awareness point of view. Now I see that it's also medically useful. The next thing I write should be another letter to Aunt Sallie.

Progress Note

From the Chart

Patient: Watkins, C.
Date of Procedure: April 29, 2008

Nature of Procedure: Re-excise small amount of additional tissue from left breast. Section marked for removal is located on the outer, inferior side, around 4 o'clock (if breast were a clock face). Objective is to achieve a clean margin around the pre-cancerous DCIS. (Doubt that patient will notice much change. Surgical plan calls for removing only a couple of minutes from breast clock, say 4:17 to 4:20.)

Pre-Surgical Events: Ms. Watkins was extremely polite and well-mannered despite the fact that we kept her waiting on the ultrasound table for a full hour due to a malfunctioning ultrasound machine. Query: How were surgical guide wires placed before ultrasound? Does anyone remember?

Surgical Notes: Mission accomplished! Procedure completed in a jiffy. Patient sent home one hour following surgery. A couple of nurses remembered Ms. Watkins from her prior surgery last November. Good time had by all.

Post-Surgical Follow-up (24 hours later): Nurse placed follow-up call to patient's home. Ms. Watkins reported feeling flattened and was watching hour after hour of Top Chef while reclining on her sofa. Possible that she is reacting to lingering effects of anesthesia, which may have addled her brain. Propose watchful waiting to see if penchant for reality TV cooking show wears off as anesthesia dissipates. Husband advised to call immediately if patient dons white chef coat and/or toque.

Post-Surgical Follow-up (72 hours later): No pathology report yet. Hope "mission accomplished" reference above was not premature. Patient reports returning to normal activities, including blog writing. However, Ms. Watkins is experiencing a continuing craving for episodes of Top Chef. Suspect that patient has underlying fantasy of winning Top Chef competition herself. In any case, checking with anesthesiologist to see if other patients are reporting similar side effects related to cable and/or reality TV. Perhaps basis for new research study. What are the recuperative effects of viewing American Idol or Dancing With the Stars while in post-surgical daze?

Final Note: Preliminary pathology report is in. No evidence of any cancer. Nurses told patient Ms. Watkins that she can relax. Final pathology report yet to be issued, but preliminarily, things looks very good. Re-excision appears to have been the right course. Hurrah! We seem to have gotten it right.

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?