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.
5/29/08
5/15/08
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.
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.
5/9/08
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.
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.
5/2/08
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.
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