I tried to tell myself I wasn't stupid for walking out of my appointment with Dr. H. I tried to tell my self that if he wouldn't listen to my perspective on whether or not I felt prepared for the appointment, he wouldn't have listened to my perpective about more important stuff, like cutting my breast open, or cutting it off. I tried to believe that I didn't need to settle for medical care that didn't make me feel safe. I tried to believe that I'd done the right thing, but I still felt stupid.
I blamed myself for not asking more questions when I made the appointment. I blamed myself for letting him hug me. I blamed myself for loosing my temper.
But what it really came down to was...I didn't want that man to touch me. I especially didn't want him to touch me with my shirt off. I more especially didn't want him to touch my naked breasts. I most especially didn't want him to touch me where I had a weird lump that made me feel creepy and sometimes hurt.
Resigned to waiting another two weeks for an consultation, I called Dr. Rocco's office in Santa Maria. A fellow drug rep had recommened her to me. I figured I'd give her a try, even though it meant an extra hour of driving. Thank God I did.
Suzzanna answered the phone. I told her I was a new patient who had recently been diagnosed with ductal carcinoma in situ, and that I'd like to schedule an appointment with the Doctor for as soon as practical.
"Can you come in today?" she asked.
It was like the sun came out from behind the clouds in the middle of June Gloom. It was like getting a birthday present from a friend who thinks you're an Aquarius instead of a Pisces. It was like waiting to get on a really good rollercoaster, and suddenly everyone ahead of you in line decides to go get on the ferris wheel instead.
Mom and I spent about 3 hours in the waiting room. Then we spent another 20 minutes or so in the exam room. We got spacey and grumpy, but it was mostly from low blood sugar. I don't think we'd had any lunch. I stole the last two hershey's kisses from the bowl in the hallway. That helped a little.
After that day, we always packed snacks when we went to a medical appointment, because you never know how long you might have to wait.
I really didn't mind that we had to wait for so long. I was just so delighted that they had squeezed us into their schedule with no notice at all.
When Dr. Rocco finally appeared, I forever gave up feeling guilty for walking out on Dr.H.
I do not think it's an exagerration at all to say that Dr. Rocco saved my life, and that, if it came down to it, Dr. H probably wouldn't have.
Monday, October 13, 2008
Friday, October 10, 2008
Surgeon #1
The first step after getting diagnosed with breast cancer was not to go and see an oncologist. Instead, my primary care provider gave me the card for a local surgeon.
Dr. H is not a breast cancer specialist, or even a cancer specialist, as far as I remember. But, he is a very well-respected surgeon. My N.P., whom I trust completely, thinks very highly of him. My landlady, who is a pharmacist and therefore plugged in to the medical community here, also thinks well of him. He’s a really nice man, and very smart, and good at what he does. They both assured me of this.
Because he’s so great, he’s also very busy. When I called to schedule an appointment, they gave me one for two weeks away. It seemed like such a long time. I was so anxious to find out what the next step would be, and what my treatment plan would look like. I knew every minute up until my appointment would be torture, and I wanted there to be as few of them as possible.
“Please,” I said, “Is there any way he can see me earlier?” There wasn’t.
“Well then, can you put me on a list of people to call in case you get a cancellation? My schedule is wide open right now. I can get there with hardly any notice at all.”
They could, but it didn’t sound like it would help me get in any sooner. His schedule was booked. They seemed to think I was lucky to be getting in as early as two weeks from now.
I gave up on the scheduling issue and asked about the appointment itself. I still felt so traumatized and abused from my biopsy experience. I was desperate not to put myself in that situation again. I wanted to be fully informed about everything I was agreeing to.
“What is going to happen at this appointment?”
“Nothing, it’s just a consultation.”
“There won’t be any kind of procedure?”
“No. It’s just a consultation.”
“No procedures at all?”
“Really. We just start out with a consultation. We’ll schedule your procedures after you’ve talked to the doctor.”
Just a consultation. Just talking to the doctor. I could agree to that. I thanked the scheduler, hung up the phone, and came down with a summer flu that kicked my butt for the next 7 days.
Then, the very best part of having cancer happened. My mom arrived from the East Coast. She came to take care of me, and accompany me to my doctor’s appointments, and keep me emotionally grounded. Thank GOD for my mom. She arrived just in time to go with me and meet Dr. H.
I wish I could say I'm not sexist, but it would be a lie. I'm biased against men. It's true. I don't feel as safe with them as I do with women. I don't trust them as easily or feel as comfortable being naked with them. Maybe this is just common sense, I don't know. I do know that male doctors need to work harder to convince me that I can believe what they are saying and that they care about my perspective. This probably isn't fair to them, but it's also not fair that I got breast cancer...so we're even.
When Dr. H entered the exam room and found my mom and me sitting there together, both looking worried and stressed, he paused and looked troubled. He fumbled over his words, trying to figure out which one of us was the patient.
Now, my mom is gorgeous and very young -looking for her age. But, I don't think she looks 35. The fact that he couldn't tell us apart meant he hadn't even looked at my chart yet. Maybe that is standard procedure, but I felt dissapointed. Just 30 seconds on the other side of the door spent looking at my chart would have given him the basic information he needed in order to appear like he cared enough to familiarize himself with my case before meeting me.
He's a big round guy; not huge, but solid looking. He's attractive too, and has a friendly looking face. He was wearing blue scrubs.
After I raised my hand to tell him I was the patient, he stepped briskly into the room, squeezed past Mom and bent in towards me for a hug. Being a well-conditioned social hugger, I half rose from my chair without thinking about it first and let him wrap his arms around me. When his mouth was closest to my ear he murmered something with the word "Baby," in it. I don't remember if it was, "Oh Baby," or "Poor Baby," but I remember very clearly that this man I'd never met before, who hadn't even looked at my chart, hugged me and called me "Baby."
I was on my guard after that. I'm sure this is the opposite of the response he expected, but I can only imagine it's common one. What woman in her right mind is comforted when a complete stranger hugs her and calls her "baby" out of the blue? If another woman did that to me, it would seem odd. When a big man does it, it sets off all the alarm bells in my head. "Watch out! Watch out!" This is not the kind of mental noise I want going on as I am talking with the person who is going to cut me open with a knife while I am unconcious.
After the hug, he sat down and opened my file.
I asked him a question or made some comment referring to my self as a breast cancer patient.
He didn't look up from the paper-work, but he made a little motion with his hand like he was brushing something away from his personal space and said, "You don't have breast cancer."
I'd spent the last two weeks totally freaked out because I had breast cancer. I'd read up on ductal carcinoma in situ and learned that it was described as Breast Cancer: Stage Zero. I knew that I was going to need some kind of surgery, perhaps a complete mastectomy, and probably radiation therapy if not chemo. My life felt totally turned upside down. My mother had taken a month off work and flown all the way across the county to help me through this serious health event. This sudden dismissal of my cancer status made me feel like I'd just been knocked off my chair.
Maybe he thought this lighter view of my condition would be soothing to me. Maybe, like the hug, he thought it would help relax me. "You have pre-cancer," he explained with a smile. Again, I had the opposite response. If he wasn't taking my disease seriously, how much effort or attention would he apply to my treatment? If he couldn't consider the emotional impact of his words before he spit them out, did I want him to be the person advising me about my health? If he was calling "pre-cancer" the disease that all the literature I'd read called "cancer," did he even have any idea what he was talking about. According to the local medical community, he's great with a knife. Fine. Other than than...he might be a total crackpot!
He went on to briefly describe the lumpectomy he would be performing, before he sent me over to the radiation oncologist for follow-up treatment. Then he pulled a large peice of folded blue paper from a drawer and asked me to put it on.
"I'm sorry," I said, "I'm not prepared to have any procedures today. I was just expecting to talk to you."
"A manual exam is part of the consultation," he informed me.
Noting my reluctant expression, he added, "You don't have to do it if you don't want to, but we'll just have to schedule it for another day." He gave me that dangerous look that said he was about to start thinking of me as an irrational, high-maintenance, problem patient.
"I understand that it would be more convienient to do it today," I said, hoping to ward off his negative judgement. "But, I've had some bad experiences recently and it's really important to me that I feel completely prepared before each appointment. I wasn't prepared to have an exam done today."
I really expected him to understand my reluctance, and maybe even ask what my bad experience was, so that he could be better able to avoid repeating it. Instead, he seemed to take my explanation as a personal criticism.
"You were prepared," he insisted. "A manual exam is standard procedure during a consultation with a surgeon." He drew the word surgeon out, like it was so self-evident.
What was I thinking? How on earth could a surgeon do his job if he wasn't allowed to touch the body he was going to be cutting? I should have know this. I should have been able to figure this out. Since I'd been too stupid to realize this obvious fact, I should make up for my stupid error by being a good girl (baby) and taking my shirt off like he wanted. Instead, I tried again to get him on my side.
"Yes. I can see that it makes sense to do a manual exam as part of the consultation. But I didn't realize that, so I wasn't prepared to do it today. It's really important to me that I feel prepared for everything that happens during my appointments."
I feel a little guilty for putting this dialouge in quotes. This conversation happened 3 months ago and I'm sure I don't remember it verbatum. I try to be fair, and report things as true to the way they really happened as possible, but I'm sure I make some mistakes. I am not, however, mistaken about the next thing he said. These are his exact words, I would bet my left breast on it.
"I disagree," he said. "You were prepared."
I don't remember what else he said after disagreeing with my feelings. I know he didn't apologize for his front desk staff not explaining the appointment to me in more detail. I know he didn't offer to institute a new office policy so that future patients would know, without having to figure it out for themselves, that a consultation included a manual exam. I know he didn't suggest rescheduling the exam or promise to keep me better informed for my future appointments with him.
But I know what I said and did.
"I can't deal with this," I mumbled with an angry sigh, as I stood up and walked out of the room. Mom, my loyal companion, grabbed her purse and followed me out the door. I didn't look back, so I can't guess what Dr. H was doing or thinking.
In the car, I collapsed. I had waited 2 weeks for this appointment, and I'd just ruined my chance to be treated by this man that every one respected as one of the best surgeons in the area. Now I would have to call around and find another one. I would probably have to wait two weeks or more to see the next doctor, and there was no guarantee I would like him either. Mom had taken all this time off work to help me through these medical adventures, and I'd just wasted two weeks of her time. I felt terrible.
And I was pissed off. I'm sure he wasn't as bad as I felt he was, but I was really struggling emotionally with the impact of being diagnosed and fired so recently. I was super-sensitive and responding harshly to even slight offenses. I'm usually a loving, compassionate, look-on-the-bright-side kind of person, but that day I was wretched. The whole way home I chanted out loud, "I hate him I hate him I hate him I hate him I hate him I hate him I hate him!"
Dr. H is not a breast cancer specialist, or even a cancer specialist, as far as I remember. But, he is a very well-respected surgeon. My N.P., whom I trust completely, thinks very highly of him. My landlady, who is a pharmacist and therefore plugged in to the medical community here, also thinks well of him. He’s a really nice man, and very smart, and good at what he does. They both assured me of this.
Because he’s so great, he’s also very busy. When I called to schedule an appointment, they gave me one for two weeks away. It seemed like such a long time. I was so anxious to find out what the next step would be, and what my treatment plan would look like. I knew every minute up until my appointment would be torture, and I wanted there to be as few of them as possible.
“Please,” I said, “Is there any way he can see me earlier?” There wasn’t.
“Well then, can you put me on a list of people to call in case you get a cancellation? My schedule is wide open right now. I can get there with hardly any notice at all.”
They could, but it didn’t sound like it would help me get in any sooner. His schedule was booked. They seemed to think I was lucky to be getting in as early as two weeks from now.
I gave up on the scheduling issue and asked about the appointment itself. I still felt so traumatized and abused from my biopsy experience. I was desperate not to put myself in that situation again. I wanted to be fully informed about everything I was agreeing to.
“What is going to happen at this appointment?”
“Nothing, it’s just a consultation.”
“There won’t be any kind of procedure?”
“No. It’s just a consultation.”
“No procedures at all?”
“Really. We just start out with a consultation. We’ll schedule your procedures after you’ve talked to the doctor.”
Just a consultation. Just talking to the doctor. I could agree to that. I thanked the scheduler, hung up the phone, and came down with a summer flu that kicked my butt for the next 7 days.
Then, the very best part of having cancer happened. My mom arrived from the East Coast. She came to take care of me, and accompany me to my doctor’s appointments, and keep me emotionally grounded. Thank GOD for my mom. She arrived just in time to go with me and meet Dr. H.
I wish I could say I'm not sexist, but it would be a lie. I'm biased against men. It's true. I don't feel as safe with them as I do with women. I don't trust them as easily or feel as comfortable being naked with them. Maybe this is just common sense, I don't know. I do know that male doctors need to work harder to convince me that I can believe what they are saying and that they care about my perspective. This probably isn't fair to them, but it's also not fair that I got breast cancer...so we're even.
When Dr. H entered the exam room and found my mom and me sitting there together, both looking worried and stressed, he paused and looked troubled. He fumbled over his words, trying to figure out which one of us was the patient.
Now, my mom is gorgeous and very young -looking for her age. But, I don't think she looks 35. The fact that he couldn't tell us apart meant he hadn't even looked at my chart yet. Maybe that is standard procedure, but I felt dissapointed. Just 30 seconds on the other side of the door spent looking at my chart would have given him the basic information he needed in order to appear like he cared enough to familiarize himself with my case before meeting me.
He's a big round guy; not huge, but solid looking. He's attractive too, and has a friendly looking face. He was wearing blue scrubs.
After I raised my hand to tell him I was the patient, he stepped briskly into the room, squeezed past Mom and bent in towards me for a hug. Being a well-conditioned social hugger, I half rose from my chair without thinking about it first and let him wrap his arms around me. When his mouth was closest to my ear he murmered something with the word "Baby," in it. I don't remember if it was, "Oh Baby," or "Poor Baby," but I remember very clearly that this man I'd never met before, who hadn't even looked at my chart, hugged me and called me "Baby."
I was on my guard after that. I'm sure this is the opposite of the response he expected, but I can only imagine it's common one. What woman in her right mind is comforted when a complete stranger hugs her and calls her "baby" out of the blue? If another woman did that to me, it would seem odd. When a big man does it, it sets off all the alarm bells in my head. "Watch out! Watch out!" This is not the kind of mental noise I want going on as I am talking with the person who is going to cut me open with a knife while I am unconcious.
After the hug, he sat down and opened my file.
I asked him a question or made some comment referring to my self as a breast cancer patient.
He didn't look up from the paper-work, but he made a little motion with his hand like he was brushing something away from his personal space and said, "You don't have breast cancer."
I'd spent the last two weeks totally freaked out because I had breast cancer. I'd read up on ductal carcinoma in situ and learned that it was described as Breast Cancer: Stage Zero. I knew that I was going to need some kind of surgery, perhaps a complete mastectomy, and probably radiation therapy if not chemo. My life felt totally turned upside down. My mother had taken a month off work and flown all the way across the county to help me through this serious health event. This sudden dismissal of my cancer status made me feel like I'd just been knocked off my chair.
Maybe he thought this lighter view of my condition would be soothing to me. Maybe, like the hug, he thought it would help relax me. "You have pre-cancer," he explained with a smile. Again, I had the opposite response. If he wasn't taking my disease seriously, how much effort or attention would he apply to my treatment? If he couldn't consider the emotional impact of his words before he spit them out, did I want him to be the person advising me about my health? If he was calling "pre-cancer" the disease that all the literature I'd read called "cancer," did he even have any idea what he was talking about. According to the local medical community, he's great with a knife. Fine. Other than than...he might be a total crackpot!
He went on to briefly describe the lumpectomy he would be performing, before he sent me over to the radiation oncologist for follow-up treatment. Then he pulled a large peice of folded blue paper from a drawer and asked me to put it on.
"I'm sorry," I said, "I'm not prepared to have any procedures today. I was just expecting to talk to you."
"A manual exam is part of the consultation," he informed me.
Noting my reluctant expression, he added, "You don't have to do it if you don't want to, but we'll just have to schedule it for another day." He gave me that dangerous look that said he was about to start thinking of me as an irrational, high-maintenance, problem patient.
"I understand that it would be more convienient to do it today," I said, hoping to ward off his negative judgement. "But, I've had some bad experiences recently and it's really important to me that I feel completely prepared before each appointment. I wasn't prepared to have an exam done today."
I really expected him to understand my reluctance, and maybe even ask what my bad experience was, so that he could be better able to avoid repeating it. Instead, he seemed to take my explanation as a personal criticism.
"You were prepared," he insisted. "A manual exam is standard procedure during a consultation with a surgeon." He drew the word surgeon out, like it was so self-evident.
What was I thinking? How on earth could a surgeon do his job if he wasn't allowed to touch the body he was going to be cutting? I should have know this. I should have been able to figure this out. Since I'd been too stupid to realize this obvious fact, I should make up for my stupid error by being a good girl (baby) and taking my shirt off like he wanted. Instead, I tried again to get him on my side.
"Yes. I can see that it makes sense to do a manual exam as part of the consultation. But I didn't realize that, so I wasn't prepared to do it today. It's really important to me that I feel prepared for everything that happens during my appointments."
I feel a little guilty for putting this dialouge in quotes. This conversation happened 3 months ago and I'm sure I don't remember it verbatum. I try to be fair, and report things as true to the way they really happened as possible, but I'm sure I make some mistakes. I am not, however, mistaken about the next thing he said. These are his exact words, I would bet my left breast on it.
"I disagree," he said. "You were prepared."
I don't remember what else he said after disagreeing with my feelings. I know he didn't apologize for his front desk staff not explaining the appointment to me in more detail. I know he didn't offer to institute a new office policy so that future patients would know, without having to figure it out for themselves, that a consultation included a manual exam. I know he didn't suggest rescheduling the exam or promise to keep me better informed for my future appointments with him.
But I know what I said and did.
"I can't deal with this," I mumbled with an angry sigh, as I stood up and walked out of the room. Mom, my loyal companion, grabbed her purse and followed me out the door. I didn't look back, so I can't guess what Dr. H was doing or thinking.
In the car, I collapsed. I had waited 2 weeks for this appointment, and I'd just ruined my chance to be treated by this man that every one respected as one of the best surgeons in the area. Now I would have to call around and find another one. I would probably have to wait two weeks or more to see the next doctor, and there was no guarantee I would like him either. Mom had taken all this time off work to help me through these medical adventures, and I'd just wasted two weeks of her time. I felt terrible.
And I was pissed off. I'm sure he wasn't as bad as I felt he was, but I was really struggling emotionally with the impact of being diagnosed and fired so recently. I was super-sensitive and responding harshly to even slight offenses. I'm usually a loving, compassionate, look-on-the-bright-side kind of person, but that day I was wretched. The whole way home I chanted out loud, "I hate him I hate him I hate him I hate him I hate him I hate him I hate him!"
Wednesday, October 8, 2008
My 10 Step Program
In this dream-like town where everything feels either confusingly familiar or unrecognizably strange, the main branch of the public library is one of the few places that seems exactly the same to me. I walk through the stacks and can't believe that I've been gone from Boulder for more than five years.
As always, the shaded lawn out front is dotted with unwashed, laid back, mostly bearded men, gathered together in loose cirlces, talking and playing music with each other. Like ornaments on these chains of humans, their dogs and bicycles tumble out around them, bright with life and color in the dark green grass. The bikes are bungee-bundled high with extra clothes and blankets. It gets cold here at night.
As always, the gallery at the north entrance is filled with local art on display. Today's eclectic collection is all samples from the current Open Studios tour. For two weekends every October, local artists invite the public into their production spaces and sometimes their homes. I'm planning to go on Saturday morning with guy named Peter who just moved here from Cayucos. I introduced myself to him yesterday, hoping to make some new friends here in Colorado. I was shocked to learn he hails from the beach-town less than ten miles from my own.
As always, all the desks and study carrols with a view are taken already. I end up working at a small purple table next to a blank white wall and too close to the noise of the Bridge Cafe. The guy working at the counter seems like a mentally well-developed adult so I don't understand why he keeps shouting across the room to the manager. Does she really need to know RIGHT NOW that a cucumber has gone bad? Do the rest of us EVER need to know?
The library recognizes me too. They gave me a fresh card even though my driver's license says California and I don't have any officially current local residence. The have me in the system as "Magic," which means I've been coming here since I was twenty-one and hadn't yet legally changed my name to "Mage." Maybe they were lax on the proof of address requirement because my loyal patronage goes back 15 years. Or, maybe they just gave me the card so I would pay the $32.50 I owed them in late fees.
I have come here to meet the reference librarians. I plan to enlist them in my project of becoming a well-paid and sought-after freelance magazine journalist. I want my narrative accounts to be studded with well-reasearched background information. I want facts and figures to provide context and cohesion to the drama and hilarity of my personal experiences. I want my own insights to fit elegantly within the larger body of public knowledge. I can't make any of this come true if I don't get better at doing research. I'm hoping they can teach me how.
This is how I do research now.
1. I type a question into the google search engine.
"Do Breast Self Exams help detect cancer earlier? "
2. I read the long list of headlines that google thinks apply to my problem:
Breast Self-Exams: Don't Let the News Confuse You
Breast Self-Exams don't help. Or do they?
Breast Self-Exams Do Not Appear to Reduce Breast Cancer Deaths
Information Sheet Breast Self Exam (Awareness)
Breast Self-Examination
Breast Self -Examination Yahoo! Health
Detecting Breast Cancer Early: Doctors Catch Cancer Earlier with...
Planned Parenthood Breast Exam
Self-Exams of Breast Questioned- Chicagotribune.com
Reader's Digest Canada-Breast Cancer Breast Cancer Screening
Lab Notes: Breast Self Exam: Don't Count on it
Breast Self-Exam in Too Valuable to Discard
Protect and Detect: What women should know about Cancer
New wasy to detect breast cancer or the stage earlier
3. I feel a little overwhelmed, wondering which one is going to answer my question, and wondering how long it would take if i clicked on all of them.
4. I realize that this is only page one of an endless number of pages listing the available results. Suddenly, I am completely overwhelmed, so I just click on the first one.
As always, the shaded lawn out front is dotted with unwashed, laid back, mostly bearded men, gathered together in loose cirlces, talking and playing music with each other. Like ornaments on these chains of humans, their dogs and bicycles tumble out around them, bright with life and color in the dark green grass. The bikes are bungee-bundled high with extra clothes and blankets. It gets cold here at night.
As always, the gallery at the north entrance is filled with local art on display. Today's eclectic collection is all samples from the current Open Studios tour. For two weekends every October, local artists invite the public into their production spaces and sometimes their homes. I'm planning to go on Saturday morning with guy named Peter who just moved here from Cayucos. I introduced myself to him yesterday, hoping to make some new friends here in Colorado. I was shocked to learn he hails from the beach-town less than ten miles from my own.
As always, all the desks and study carrols with a view are taken already. I end up working at a small purple table next to a blank white wall and too close to the noise of the Bridge Cafe. The guy working at the counter seems like a mentally well-developed adult so I don't understand why he keeps shouting across the room to the manager. Does she really need to know RIGHT NOW that a cucumber has gone bad? Do the rest of us EVER need to know?
The library recognizes me too. They gave me a fresh card even though my driver's license says California and I don't have any officially current local residence. The have me in the system as "Magic," which means I've been coming here since I was twenty-one and hadn't yet legally changed my name to "Mage." Maybe they were lax on the proof of address requirement because my loyal patronage goes back 15 years. Or, maybe they just gave me the card so I would pay the $32.50 I owed them in late fees.
I have come here to meet the reference librarians. I plan to enlist them in my project of becoming a well-paid and sought-after freelance magazine journalist. I want my narrative accounts to be studded with well-reasearched background information. I want facts and figures to provide context and cohesion to the drama and hilarity of my personal experiences. I want my own insights to fit elegantly within the larger body of public knowledge. I can't make any of this come true if I don't get better at doing research. I'm hoping they can teach me how.
This is how I do research now.
1. I type a question into the google search engine.
"Do Breast Self Exams help detect cancer earlier? "
2. I read the long list of headlines that google thinks apply to my problem:
Breast Self-Exams: Don't Let the News Confuse You
Breast Self-Exams don't help. Or do they?
Breast Self-Exams Do Not Appear to Reduce Breast Cancer Deaths
Information Sheet Breast Self Exam (Awareness)
Breast Self-Examination
Breast Self -Examination Yahoo! Health
Detecting Breast Cancer Early: Doctors Catch Cancer Earlier with...
Planned Parenthood Breast Exam
Self-Exams of Breast Questioned- Chicagotribune.com
Reader's Digest Canada-Breast Cancer Breast Cancer Screening
Lab Notes: Breast Self Exam: Don't Count on it
Breast Self-Exam in Too Valuable to Discard
Protect and Detect: What women should know about Cancer
New wasy to detect breast cancer or the stage earlier
3. I feel a little overwhelmed, wondering which one is going to answer my question, and wondering how long it would take if i clicked on all of them.
4. I realize that this is only page one of an endless number of pages listing the available results. Suddenly, I am completely overwhelmed, so I just click on the first one.
5. I read the article and glean some good quotes.
The monthly breast self-exam (or BSE) has been in the cross hairs for a while. The American Cancer Society's screening recommendations made it optional in 2003.
There's no evidence that monthly self-exams reduce breast cancer deaths.
There's a distinction, as fine as it may seem, between what longtime breast self-exam critic Susan Love calls "the formal, high church breast exam" and simply being familiar with your own body. The normal poking around that women (or their partners) do is good enough, says Love.
The studies included in the latest review can't tell us why a formal BSE program doesn't work.
6. I try to make sense of the quotes and come up with more questions that I had already.
Before 2003, what did the American Cancer Society have to say about BSE's, and why did they change their minds?
Is reducing breast cancer related deaths the only goal of BSE's? What study is this information from and how was it designed? How long were these women followed? What other results were they measuring for? What was the control population doing?
What's a "formal, high-church breast exam?" How many suspicious lumps are found by partners rather than by women themselves. Do sexually inactive women find lumps later than sexually active women? What are the consequences of finding lumps later?
What studies where included in the "latest reveiw?" The lastest review of WHAT? By WHOM?
7. Frustrated and confused, I start poking around in the margins of the article. I find a link to a video explaining how to do a proper BSE.
http://link.brightcove.com/services/link/bcpid1274008720/bclid196251067/bctid196215070
8. I start to watch it, but I get bored. So, I click on another link called "What is Breast Cancer?"
http://link.brightcove.com/services/link/bcpid1274008720/bclid196214856/bctid44147265
9. I get totally pissed off at the speaker, Pat Murphy Stark. I know it doesn't make sense to get angry at her, she didn't write the words. But she is the one saying them and I don't like what she's saying. She introduces the video by saying:
"Because body image issues weigh so heavily on women, it makes sense that the illness many women fear the most is the one that targets the most obvious sign of femininity, the breasts."
Excuse me!? I guess this plays some part in the complexity of our emotional response to breast cancer, but the real reason I was scared when I had breast cancer was:
IT CAN KILL YOU.
After the sexual self-image psychobabble, she goes on to explain that "two hundred thousand american women will be diagnosed with breast cancer this year. This means about 1 in 8 women will be told they have breast cancer at some point in their life."
First, this inference and the way she's presenting it is statistically sloppy. Second, here's another reason why we might be a little freaked out about breast cancer OTHER than our body image issues. It's unbelievably common. What else do we have a 1 in 8 chance of in our lifetime?
10. I ask google and find out that, according to Will Fairbrother (what a great name!), assistant professor of biology at Brown University, if McCain gets elected, there is a 1 in 8 chance that Sarah Palin will succeed to the presidency.
That scares me more than breast cancer. It scares me so bad that I give up researching and go buy a huge oatmeal raisin cookie from the guy who has, thankfully, stopped yelling about bad cucumbers.
Monday, October 6, 2008
This Is That Moment
I've always wondered when I would have that moment; the one where you finally really know for sure that you are an adult.
I know people have it at different times, early and late. I imagine my mother had it when she gave birth to me at age 20. Or, maybe she had it a few years later when she found herself raising two small girls alone. I'll have to ask her. I suspect my father never had that moment at all. It's too late to ask him.
I was surprised at 35 that mine hadn't come yet. But, I hadn't yet bought a home, or gotten married, or had a baby. I figured once I settled down and did one or all of those things I would finally feel like I was really grown-up.
But it wasn't a person or a house that did it for me. It was a machine.
I was standing in front of it, naked from the waist up. A woman I'd never met before was helping me lean forward the proper degree so she could gently place my bare breast on a cold shelf. As soon as she had me positioned, she started to crank the upper plate down so my breast would be smashed between the two plates. Watching that arm lower towards me during my first mammogram, I finally had that feeling.
There's no turning back. I'm really a grown up now.
I know people have it at different times, early and late. I imagine my mother had it when she gave birth to me at age 20. Or, maybe she had it a few years later when she found herself raising two small girls alone. I'll have to ask her. I suspect my father never had that moment at all. It's too late to ask him.
I was surprised at 35 that mine hadn't come yet. But, I hadn't yet bought a home, or gotten married, or had a baby. I figured once I settled down and did one or all of those things I would finally feel like I was really grown-up.
But it wasn't a person or a house that did it for me. It was a machine.
I was standing in front of it, naked from the waist up. A woman I'd never met before was helping me lean forward the proper degree so she could gently place my bare breast on a cold shelf. As soon as she had me positioned, she started to crank the upper plate down so my breast would be smashed between the two plates. Watching that arm lower towards me during my first mammogram, I finally had that feeling.
There's no turning back. I'm really a grown up now.
Friday, October 3, 2008
The Winner Is...
To everyone who entered my contest to name my new prosthesis, thank you! Your creativity and playfullness delighted me. I especially enjoyed all the double meanings and insider jokes. But, I could only choose one winner and she is....
Kass Flaig!
Kass is my wonderfully generous and thoughtful friend whom I met after reading her brochure at GH sports in San Luis Obispo. She's a personal trainer; specializing in running, cycling and swimming. I'm no triathalete, but I had lost my motivation for running last year, and thought working with her might help. It really did. She is so smart and funny and caring and fun to be around. I looked forward to our sessions just to spend time with her. She is exactly the right amount of tough to make you do things you might not exactly want to do (like run faster for longer!) and exactly the right amount of sweet so that you don't resent her for it. She also has an incredible store of technical knowledge that helped me understand my body better, use it more efficiently and find my running workouts vastly more interesting. She's great at what she does, and she's a wonderful person. I was already glad to have her in my life, but now I am even more grateful...because I finally have the perfect name for my artificial breast.
Phyllis.
It's perfect! It's descriptive...she "fills" in the empty place in my bra. It's undercover. I can say out loud in public..."Oh, I forgot to bring Phyllis!" or "Does this shirt look ok without Phyllis?" or even, "Have you met Phyllis?" It's old-fashioned, and thus sounds respectable yet slightly ironic. It's feminine, a must. It can be "Filly" for short and makes me feel like I have a pet pony. "Come on, Filly, let's go for a ride!"
These are all things Kass may have thought of, but there are other things that make this name perfect; details from my life that she couldn't have known.
My great aunt was named Phyllis. At first this was a detraction in my mind. I didn't want to name my prosthetic after someone I knew. But, Phyllis lived far away in Florida while I was growing up and I only met her once or twice. She passed away a few years ago and, while I was sad for my Grandma, I didn't feel sad for myself at all. Since I obviously don't have a very strong association with her or with that name...I decided there was room in my psyche for a new meaning to the word.
Mom pointed out how ideal the name really is when she reminded me that Phyllis wasn't just my Grandmother's sister, she was her twin. Just like my breasts, they used to be a matched set...and now one of them is gone forever. So, thanks to Kass and my Mom, I don't just have a cool new name for my prosthetic, I now have a name for my left breast too. I am naming it after my beautiful, talented, patient and loving grandmother, Doris.
Kass Flaig!
Kass is my wonderfully generous and thoughtful friend whom I met after reading her brochure at GH sports in San Luis Obispo. She's a personal trainer; specializing in running, cycling and swimming. I'm no triathalete, but I had lost my motivation for running last year, and thought working with her might help. It really did. She is so smart and funny and caring and fun to be around. I looked forward to our sessions just to spend time with her. She is exactly the right amount of tough to make you do things you might not exactly want to do (like run faster for longer!) and exactly the right amount of sweet so that you don't resent her for it. She also has an incredible store of technical knowledge that helped me understand my body better, use it more efficiently and find my running workouts vastly more interesting. She's great at what she does, and she's a wonderful person. I was already glad to have her in my life, but now I am even more grateful...because I finally have the perfect name for my artificial breast.
Phyllis.
It's perfect! It's descriptive...she "fills" in the empty place in my bra. It's undercover. I can say out loud in public..."Oh, I forgot to bring Phyllis!" or "Does this shirt look ok without Phyllis?" or even, "Have you met Phyllis?" It's old-fashioned, and thus sounds respectable yet slightly ironic. It's feminine, a must. It can be "Filly" for short and makes me feel like I have a pet pony. "Come on, Filly, let's go for a ride!"
These are all things Kass may have thought of, but there are other things that make this name perfect; details from my life that she couldn't have known.
My great aunt was named Phyllis. At first this was a detraction in my mind. I didn't want to name my prosthetic after someone I knew. But, Phyllis lived far away in Florida while I was growing up and I only met her once or twice. She passed away a few years ago and, while I was sad for my Grandma, I didn't feel sad for myself at all. Since I obviously don't have a very strong association with her or with that name...I decided there was room in my psyche for a new meaning to the word.
Mom pointed out how ideal the name really is when she reminded me that Phyllis wasn't just my Grandmother's sister, she was her twin. Just like my breasts, they used to be a matched set...and now one of them is gone forever. So, thanks to Kass and my Mom, I don't just have a cool new name for my prosthetic, I now have a name for my left breast too. I am naming it after my beautiful, talented, patient and loving grandmother, Doris.
Leaving Memories
I'm in Boulder, the town I called home for most of my twenties. The weather's beautiful. The people-watching is excellent. The streets and buildings are deeply familiar and also confusing, like a dream. The house I lived in on High St. is gone. The shopping mall that sat empty for so many years has been replaced by a Home Hepot. The health food store I worked in looks exactly the same, but it's filled with strangers instead of friends.
To add to my confusion, I watched the vice-presidential candidate's debate last night. I wouldn't usually torture myself so, but some old friends had invited me over and I wanted to see them. I never knew them all that well, but I'd always liked them very much. I was pleased to hear they had pleasant memories of my younger self.
"Look," they said, pointing to a bowl of chips sitting next to two kinds of salsa. "You brought this dish to a party here once. You brought it with flowers floating in it, and left it behind. We always think of you when we use it."
I don't remember that at all, but I believe them. It sounds like something I'd do, and the bowl almost seemed familiar.
How frightening to think that such an off-hand act could last in someone's memory for so many years. I'm relieved their association with me was a happy one. Thank goodness I hadn't broken something that night, or brought something offensive. But, I guess if I had, their memory would have faded by now. Of course they might keep the useable thing I'd left, and remembered the flowers that came with it. But if I'd broken something, they would have fixed it by now...or replaced it. Maybe our community is self-selecting that way...filtering out the past for happy memories, and discarding the messed-up ones. I'd like to think so.
There was another woman there last night who remembered me from years ago. She asked how I'd been doing, and I was totally at a loss for words.
I could have told her that California is beautiful and I love it there. I could have said I'd learned to sail and bought myself a little boat. I could have described the hummingbirds, monarch butterflies, otters and dolphins that thrill me so frequently.
But it almost feels like lying to answer any question about how I've been without mentioning breast cancer. It's really been my main occupation since July. And if I don't mention it...then everyone else in the room who knows what I've been through might feel uncomfortable...like maybe I don't want it mentioned. Like, it's suddenly a secret. It's all so awkward.
I told her I was recovering from a mastectomy and asked, did she want to feel my fake boob? (The nice thing about the sleeveless dress I bought at Ross last week is, you can whip the prosthetic out right through the armhole. )
I'm sure this is not the most graceful way to handle the situation. If I run into her again in 10 years, will she remember me as the woman who made her squeeze a plastic tit on the night of the VP debates? Or, will she remember the lemon-curry soup I made from home-grown butternut squash. Or, will she remember nothing about that evening at all, because I didn't leave anything behind.
To add to my confusion, I watched the vice-presidential candidate's debate last night. I wouldn't usually torture myself so, but some old friends had invited me over and I wanted to see them. I never knew them all that well, but I'd always liked them very much. I was pleased to hear they had pleasant memories of my younger self.
"Look," they said, pointing to a bowl of chips sitting next to two kinds of salsa. "You brought this dish to a party here once. You brought it with flowers floating in it, and left it behind. We always think of you when we use it."
I don't remember that at all, but I believe them. It sounds like something I'd do, and the bowl almost seemed familiar.
How frightening to think that such an off-hand act could last in someone's memory for so many years. I'm relieved their association with me was a happy one. Thank goodness I hadn't broken something that night, or brought something offensive. But, I guess if I had, their memory would have faded by now. Of course they might keep the useable thing I'd left, and remembered the flowers that came with it. But if I'd broken something, they would have fixed it by now...or replaced it. Maybe our community is self-selecting that way...filtering out the past for happy memories, and discarding the messed-up ones. I'd like to think so.
There was another woman there last night who remembered me from years ago. She asked how I'd been doing, and I was totally at a loss for words.
I could have told her that California is beautiful and I love it there. I could have said I'd learned to sail and bought myself a little boat. I could have described the hummingbirds, monarch butterflies, otters and dolphins that thrill me so frequently.
But it almost feels like lying to answer any question about how I've been without mentioning breast cancer. It's really been my main occupation since July. And if I don't mention it...then everyone else in the room who knows what I've been through might feel uncomfortable...like maybe I don't want it mentioned. Like, it's suddenly a secret. It's all so awkward.
I told her I was recovering from a mastectomy and asked, did she want to feel my fake boob? (The nice thing about the sleeveless dress I bought at Ross last week is, you can whip the prosthetic out right through the armhole. )
I'm sure this is not the most graceful way to handle the situation. If I run into her again in 10 years, will she remember me as the woman who made her squeeze a plastic tit on the night of the VP debates? Or, will she remember the lemon-curry soup I made from home-grown butternut squash. Or, will she remember nothing about that evening at all, because I didn't leave anything behind.
Wednesday, October 1, 2008
Beyond A Cure
Mom and I were just talking the other day about how frustrating it is to see all this attention placed on "survivors of" and "finding a cure for" breast cancer. I mean, yes, that is good. I'd rather be a survivor than a victim, and a cure would be great. But really, it seems like a backward tactic.
The statistics I've read are so alarming. The lastest one said that one in nine women will be diagnosed with breast cancer in her life time. 1 in 9! That just seems ridiculous. Of course, most of them will not be as young as me...or my friend who was diagnosed at age (can you believe it) 17. But, young or old, getting breast cancer just sucks. Even if, like me, you survive it. Even if, like me, you get cured.
What we really need (duh) is to understand why we are getting it! I just can't understand why more people aren't talking about this. WHY are so many women getting breast cancer? What is causing it? How can we prevent it!?
Thank goodness for Susan Love of Breast Health Book fame. She's started a project to support research into finding the cause and stopping it before it starts. It seems like a good idea and a good program. They need women to register and be available for studies. They want to collect information about the health of all kinds of women...bc survivors, those at risk, and those with no history of it at all. Please consider adding yourself to the pool. Please consider asking the women in your life to do so too.
Here's the info.
What we really need (duh) is to understand why we are getting it! I just can't understand why more people aren't talking about this. WHY are so many women getting breast cancer? What is causing it? How can we prevent it!?
Thank goodness for Susan Love of Breast Health Book fame. She's started a project to support research into finding the cause and stopping it before it starts. It seems like a good idea and a good program. They need women to register and be available for studies. They want to collect information about the health of all kinds of women...bc survivors, those at risk, and those with no history of it at all. Please consider adding yourself to the pool. Please consider asking the women in your life to do so too.
Here's the info.
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