I got a letter from my uncle in Hawaii yesterday. One of my favorite letters of all time came from Uncle G a long time ago. I don’t remember what it said. I must have been about thirteen. It came in a plain white business envelope. On the front, next to my name, he had drawn a big oval. Standing next to the oval was a little man, combing his hair. He was standing with his back to me. But Uncle G. had drawn the front of him inside the oval, so it was clear that the oval-shape was meant to be a mirror. I was so impressed by how he’d done this, drawn the same person in the same pose, facing two different directions. The back of the envelope was even better.
There was the oval again, in the exact same place as on the front. There was the little man inside the mirror, in the same comb-raised-to-head position as on the front. But this time, he was only looking out of the mirror, not standing beside it. Beside the mirror, and above it and all around it, Uncle G had drawn ghosts and ghouls, floating curiously and peering in at the human on the other side. It was creepy, and thought provoking. I loved it.
Last night, C. showed me her jewelry. She has it divided into two categories; things she wears and things she doesn’t. The “wears” category was filled with things that radiate beauty and taste, just like C. does. The “doesn’t” category had a little more variety, but not much. There was a pair of gold and green earrings that made me think of pine needles. There was a silver chain with a heart-shaped pendant and a miniature mistrel player that she wore throughout high school. My favorite was a tiny gold pendant shaped like a songbird in flight. It had been a gift. She got it when she graduated eighth-grade.
Eighth-grade! My goodness. I can’t imagine.
I saved only two things from my childhood; a home-made teddy bear and a worn-out book of fairy-tales. They are so precious to me that I will probably never get rid of them. But that’s all. Everything else, every other physical possession I own, must be both beautiful and useful, or it goes to Goodwill. “Might be useful someday" just doesn’t cut it in my book. If I’m not using it now, then it’s not useful, and it goes. I guess that’s why the book and the bear escape my periodic purges. I still read the stories, I still sleep with Teddy when I’m scared and alone.
If I was more sentimental about stuff, I might have saved more things. If I didn’t abhor clutter I might own stacks of memorabilia. If I hadn’t moved so many times, my closets might be filled with boxes of things that make me smile and remember happy days. In this alternate reality where I value meaning over purpose, you can bet I would still have that letter from my uncle. At least, I would still have the envelope it came in.
That’s a long introduction. I’m really rambling this morning. I have a headache. I’m sure it’s because I ate most of an angel food cake for supper last night. Then, for dessert, I ate the rest of it. To make it a meal, I topped it with plain, sugar-free, non-fat, organic yoghurt and fresh strawberries, so it seemed almost healthy. For dessert, I just ate cake.
What I really want to write about this morning is privacy, and how little of it I have.
Uncle G says he's enjoying my blog. It's so funny to hear this from people. Of course, it makes sense that he reads it sometimes. I'm sure I gave him the address myself. But, it never occurs to me that he might be reading it. It never occurs to me that anyone is reading it unless they tell me, and then I usually forget. I probably couldn't keep writing if I really thought about everyone out there whom these words might reach.
He wrote, "I've been following your health-saga as closely as I can from my perch here in the middle of the Pacific, thanks to your fantastic blog!"
He wrote, "It's very interesting reading about your thoughts and feelings at this time in your life."
He wrote, "I have to shake my head at your generations's openness about your lives. Can you imagine Grandma's generation sharing such intimate details of their lives with so many people?"
I have to admit, no I can't. I can't imagine my grandmother sharing such intimate details of her life with anyone at all. Why do I do it? It really does seem to be a generational thing. Why are we twenty and thrirty-somethings shameless enough to turn ourselves inside out for public inspection? Why are we narcissistic enough to think that anyone would want to look?
I've been thinking a lot about generational differences lately. My current romantic interest and I reach out to each other across a distance of fourteen years. It's weird. I ask my self if I can ever really understand and know intimately someone who can remember the day Kennedy was shot, whose childhood wasn't fraught with muppets, who has been a full-grown adult for exactly twice as many years as I have? And, as importantly, will I ever really be understood in return?
I watched the first half of "Guess Who's Coming To Dinner" last night. I haven't watched it since I was old enough to understand what's going on. Even thought I know what's coming, I'm shocked to see Katherine Hepburn's loving, liberal, well-educated character break out in a cold sweat as she realizes her daughter intends to marry this man. This man is, of course, the almost unbearably dignified and respectable Sidney Poitier playing an internationally admired medical doctor, author, and humanitarian.
What makes his uprightness bearable is the abandon with which he shows his character to be madly in love with the sparklingly oblivious girl, Joey. His boy-swoons are the final touch that solidifies the first three words of this movie's theme. He is perfect, and yet.
And yet, they can't see him marrying his daughter. They can't see him because he's so different from them. They can't see him because his background, his family, his experiences are so completely alien to theirs.
I think in my grandparent's generation, there were more shortcuts to intimacy. If you stayed within your own narrow group, you didn't need to ask probing questions or open yourself up to unprotected scrutiny. If you and another person shared the same background of race, class, education and culture you could make a lot of (mostly correct) assumptions. Of course, for married couples, there was the inevitable gulf between male and female perspectives. But that one was easily dealt with. Father knew best and women adjusted their ideas, or at least their actions, accordingly.
Despite certain politicians' myopic nostalgia for that world, it's not the one we live in anymore, and my generation knows it. Maybe this is what inspires our unabashed self-exposure. We want to be seen and understood, not just by the people who share a common history with us, and can thus imagine pretty accurately what's going on inside us. We want to be seen by everyone.
As a white girl who grew up poor but middle class in a liberal single-parent family just over the southern edge of the East Coast, I want to be understood by the Armani-suited man I met at the coffee shop whose parents emigrated from India in 1969 and still practice medicine together in his home town of San Diego. I want to be understood by the red-headed redneck drinking whiskey from a bottle at a tailgate party on the frozen surface of lake whose name sounds like ducks-in-a-keg. I want to be understood by the 8 year old girl in Santa Fe whose born-again christian parents think she has a sinful nature and by the brawny ex-football coach who lives on a sailboat with his dog and by the super-model-pretty Kenyan woman who grew up in boarding school and drives four hours each way to get her hair done.
And I want to understand them back.
I can't enjoy either the miracle of being understood, unless I'm generously and courageously honest. And setting an example of how to do so, increases the chances that other people will do it too.
So that's the "why," but where's the "how?" How is it we have the guts to risk public ridicule and invite private distain? How do we garner the nerve to stand at the edge of our keyboards, tossing our doubts and fears into the pool of public knowlege? How dare we boast about our happiness when others are suffering and whine about our failures when we know we brought them on ourselves?
I don't know. Is it like jumping off a cliff; all our friends are doing it?
I started blogging because my loved ones had a desire and a right to know what was happening in my unemployed, cancer-obsessed life, and I was too tired to call them back or write to them individually. I kept at it because I want other cancer patients to be able to learn from my experience, and maybe have a better one. I wrote intimate and personal things because I saw a need for it. Most of the literature on breast cancer is dry. Lots of it is funny. Some of it is honest. Once in a while someone admits how wrenching it is to rehearse the words "ductal carcinoma" while dialing your mom's phone number. But, nobody I found would discuss the sickening sight of your own bloody tumor scraps laid out on a glass plate or the practical details of finding the right-sized prosthesis.
I was able to do it because after that double whammy day, I felt like I didn't have anything else to loose. Also, cancer threw my precious-treasure nature into sudden stark relief. If my own life was so valuable that I was terrified of losing it and hell-bent to keep it, well then, there must not be anything too ridiculous or embarrassing about it. This attitude keeps getting stronger as you, my mysterious and multiple readers, keep telling me how grateful you are that I have spared modesty and shame to bring you the real story of these last few months in my life.
But, this post is only slightly related to getting fired and having cancer. It's mostly about cake and Sidney Poitier and my uncle in Hawaii. It's about muppets and dating and gold pendants. It's about ghosts and teddy bears and a generation of bloggers.
When my mom was staying with me in California, we saw Mama Mia at the theatre with a bunch of my friends. We sighed at the scenery, laughed at the boys dancing in flippers, groaned at Peirce Brosnan's voice, sang along with Meryl Steep, and threw popcorn at each other. It was the best 90 minutes I'd had since the first full day after my diagnosis. It was the only 90 minutes I'd had where I didn't think about the fact that I had cancer; not even once.
Look at me now! I think about all kinds of things that don't have anything to do with cancer!
This post is similar to the one where I talk about going running for the first time. On that day I finally felt like I had my body back. Today, I finally feel like I have my mind back. Someday soon, I won't have any tears left to cry when I look at my naked chest in the mirror, and then I'll know I have my heart back too.
And then, when I have written everything useful I can think of relating my doublewhammy adventure, and I'm all moved in to my new post-crisis life, I will end this blog.
But not just yet.
P.S. I lifted "fraught with muppets" off a blog called Momapop. Anyone who grew up with Sesame Street, Fraggle Rock, the Muppet Movies and, my personal favorite, Pigs in Space, should understand the charm, threat, and accuracy of this phrase. I couldn't resist it.
Friday, October 24, 2008
Tuesday, October 21, 2008
What I've been doing
Good Morning!
Gosh, I don't know how an unemployed person can be so busy. I haven't posted lately because I've been working on...
1. Applying for a part-time medical writing job. Applicants can live anywhere in the country. If I get the job, they will fly me to seminars where I will listen to reports on clinical studies and other health related information. Then, I get to go home and write up summaries. With my drug-selling background and hobby of writing, it's a good fit. Even better, most of the seminars will be in Maryland...very close to where my mom, sister and grandma live.
2. Beginning a fundraising project for a modern dance company here in Denver. They are just fabulous. Check them out at http://www.kimrobardsdance.org/.
3. Finishing up some articles I've written lately, and fishing around to see if I can actually get them published somewhere.
Those are just the main projects from the last few days. It seems like I've got a hundered other little things on my mind. I remember when I used to read the personal ads on craiglist...there were alwasy people on-line saying they were bored. I just can't imagine. There is so much to do!
Aside from work-type activities, I'm also having a very good time:
1. Hanging out with C. whenever she can find a littel pocket of time between her intense work and school schedule. Sunday we strolled through the Botanic Gardens, which are only a few blocks from her house. Beautiful!
2. Reconnecting with old friends, most of whom I haven't really seen or talked to much for 5 years or more. So much fun.
3. Exploring a significant spark with an old flame. I'll write more about this in it's own post. Post-mastectomy romance is a topic that really deserves it's own spotlight in this blog.
So, I'm sorry I haven't written much lately. This is what I've been up to, if you're curious.
I'm sure I'll write more soon.
Gosh, I don't know how an unemployed person can be so busy. I haven't posted lately because I've been working on...
1. Applying for a part-time medical writing job. Applicants can live anywhere in the country. If I get the job, they will fly me to seminars where I will listen to reports on clinical studies and other health related information. Then, I get to go home and write up summaries. With my drug-selling background and hobby of writing, it's a good fit. Even better, most of the seminars will be in Maryland...very close to where my mom, sister and grandma live.
2. Beginning a fundraising project for a modern dance company here in Denver. They are just fabulous. Check them out at http://www.kimrobardsdance.org/.
3. Finishing up some articles I've written lately, and fishing around to see if I can actually get them published somewhere.
Those are just the main projects from the last few days. It seems like I've got a hundered other little things on my mind. I remember when I used to read the personal ads on craiglist...there were alwasy people on-line saying they were bored. I just can't imagine. There is so much to do!
Aside from work-type activities, I'm also having a very good time:
1. Hanging out with C. whenever she can find a littel pocket of time between her intense work and school schedule. Sunday we strolled through the Botanic Gardens, which are only a few blocks from her house. Beautiful!
2. Reconnecting with old friends, most of whom I haven't really seen or talked to much for 5 years or more. So much fun.
3. Exploring a significant spark with an old flame. I'll write more about this in it's own post. Post-mastectomy romance is a topic that really deserves it's own spotlight in this blog.
So, I'm sorry I haven't written much lately. This is what I've been up to, if you're curious.
I'm sure I'll write more soon.
Thursday, October 16, 2008
Running! (Finally)
Kass, my trainer, used to call me an endurance athlete. I loved it when she’d say that. I’d roll my eyes and shake my head, wondering how that could be true? Me? An athelte? Then I’d remember the 9 or 12 or 15 mile run I’d done recently and realize she must be right. At least, she was right until I got diagnosed with breast cancer.
I don’t know why I stopped running. I wasn’t sick. Other than a twingey feeling in my right breast, I was fine. Since I was unemployed too, I should have been able to find the time. True, I didn’t have my company car anymore, but that shouldn’t have mattered. From my front door I could easily jog to a number of gorgeous trails. And, if I hopped on my newly borrowed bicycle, I could reach even more. I loved that about Los Osos. I miss it now and lament those lost days.
I don’t know why I stopped eating right, either. Suddenly the oatmeal-cookie-and-ice-cream-group dominated my personal food pyramid. Before cancer, I planned my meals with a balance of fresh vegetables, whole grains, lean proteins and unsaturated fats. After cancer, I planned them with a balance of crunchy, sweet, greasy, hot, cold and creamy. I weighed 10 pounds more at the end of July than I had at the beginning. I wasn’t just stuffing my face; I’m pretty sure I was stuffing my fear.
After my surgery in August made me cancer free, my eating habits changed again. Healthy food regained its appeal. Sugar and fats stopped driving me and resumed their rightful place in the backseat of my diet. I felt so much better emotionally, so relieved and clear, that I might have started running again. I might have, if I hadn’t had a huge bandage over half my chest and circulatory system flushed with pain-killers.
Recovering from the mastectomy took far longer than I’d expected. For weeks I didn’t have anything approaching a normal energy level. I was exhausted every day. Even after I stopped sleeping half the day away, I was in too much pain bear the impact that physical activity placed on my chest. The jostle of even a gentle trot would have collapsed me. Also, because the slightest pressure on the skin from my collar bone to my lower ribs made me cry out in agony, I was terrified of falling.
As August ended, I started going on little hikes, just to get outside and get moving. I stepped gently, and rested afterwards. In September I went to a yoga class, but it was too hard. I couldn’t move my arm right and was completely unable to lay down on my stomach for the floor poses. It’s October now, ten weeks since my surgery. I went running for the first time yesterday.
There’s a beautiful park just a couple of blocks from C.’s new condo in Denver where I am staying. The center of it is open and grassy. Locals play frisbee, touch football, and throw balls to their dogs out there. All around the edges of the park are beautiful big trees. This week they are changing color with the seasons. When the wind blows, golden leaves flurry through the air on their way to the ground. It reminds me of snow; something I haven’t seen in years.
The dirt path that travels the perimeter of the park is 1.5 miles long. My plan was to do the loop three times, running for a mile and then walking for half each time. I thought I could run easy for the first mile, steady for the second, and push it on the third. Being a heart-rate-monitor-junkie, this would mean keeping my HR between 140 and 150 for the first mile, raising it to 150-160 for the second and keeping it above 161 for the final, fastest loop. Boy, was I in for a surprise.
I had gotten so out of shape that even a sludgey, slogging pace skyrocketed my pulse up past 170 beats per minute. I usually reserve this kind of effort for an serious sprint. I was out of breath after the first 10 meters. Worse than that, I was embarrassed. My runner’s ego was taking a dive…or maybe a canon-ball, or a belly-flop.
It’s silly to be embarrassed while I’m running, I know that. It’s not like any of the other park-goers are looking at me and wondering, “Why is that girl running so slow?” If they are, they’re not going to say anything outloud. But, just in case they do, it makes me feel better if I have a comeback ready. Yesterday, my planned snappy retort was, “Hey! Give me a break! I’m recovering from surgery!” I’m sure you realize, as I do now, that I was really talking to myself.
I listened. I gave my self a break and stopped worrying about my speed or my heart rate. Instead, I scrounged around in my brain for every scrap of advice Kass or anyone else had ever given me about how to run well. I held my head high and straightened my posture. I loosened my wrists and increased the distance between them. I imagined angling my elbows inward as they passed behind my back. I took quick small steps, about 90 of them per minute. I focused on getting all the used air out of my lungs, but let the in-breath come naturally. I relaxed my shoulders and strengthened my core. Pretty soon, I felt pretty good.
It didn’t matter that my belly was jiggling a lot more that I remembered, and that my chest was jiggling a lot less. It didn’t matter that I finished my first mile 4 minutes later than I would have been able to back in June. I think running is not the only part of life where good form makes up for a lot of other shortcomings.
My assumption that strangers wouldn’t actually comment out loud on my fitness activities turned out to be mistaken. As I rounded the north-east corner of the park, a homeless-looking man shouted at me across the green. “Hey! Keep smiling! You’re beautiful! And you’re getting a nice workout!” I did have one high-spirited sprint when my playlist finally shuffled around to Jem's peppy song Just a Ride. But this didn't happen during the sprint. This happened during one of my walking breaks.
It was a good reminder. It really doesn’t matter how fast I’m going. It’s just about getting out there and having the best run I can have, whatever that looks like. That’s what I did yesterday and I felt like a champion once again. Apparently, I looked like one too.
I don’t know why I stopped running. I wasn’t sick. Other than a twingey feeling in my right breast, I was fine. Since I was unemployed too, I should have been able to find the time. True, I didn’t have my company car anymore, but that shouldn’t have mattered. From my front door I could easily jog to a number of gorgeous trails. And, if I hopped on my newly borrowed bicycle, I could reach even more. I loved that about Los Osos. I miss it now and lament those lost days.
I don’t know why I stopped eating right, either. Suddenly the oatmeal-cookie-and-ice-cream-group dominated my personal food pyramid. Before cancer, I planned my meals with a balance of fresh vegetables, whole grains, lean proteins and unsaturated fats. After cancer, I planned them with a balance of crunchy, sweet, greasy, hot, cold and creamy. I weighed 10 pounds more at the end of July than I had at the beginning. I wasn’t just stuffing my face; I’m pretty sure I was stuffing my fear.
After my surgery in August made me cancer free, my eating habits changed again. Healthy food regained its appeal. Sugar and fats stopped driving me and resumed their rightful place in the backseat of my diet. I felt so much better emotionally, so relieved and clear, that I might have started running again. I might have, if I hadn’t had a huge bandage over half my chest and circulatory system flushed with pain-killers.
Recovering from the mastectomy took far longer than I’d expected. For weeks I didn’t have anything approaching a normal energy level. I was exhausted every day. Even after I stopped sleeping half the day away, I was in too much pain bear the impact that physical activity placed on my chest. The jostle of even a gentle trot would have collapsed me. Also, because the slightest pressure on the skin from my collar bone to my lower ribs made me cry out in agony, I was terrified of falling.
As August ended, I started going on little hikes, just to get outside and get moving. I stepped gently, and rested afterwards. In September I went to a yoga class, but it was too hard. I couldn’t move my arm right and was completely unable to lay down on my stomach for the floor poses. It’s October now, ten weeks since my surgery. I went running for the first time yesterday.
There’s a beautiful park just a couple of blocks from C.’s new condo in Denver where I am staying. The center of it is open and grassy. Locals play frisbee, touch football, and throw balls to their dogs out there. All around the edges of the park are beautiful big trees. This week they are changing color with the seasons. When the wind blows, golden leaves flurry through the air on their way to the ground. It reminds me of snow; something I haven’t seen in years.
The dirt path that travels the perimeter of the park is 1.5 miles long. My plan was to do the loop three times, running for a mile and then walking for half each time. I thought I could run easy for the first mile, steady for the second, and push it on the third. Being a heart-rate-monitor-junkie, this would mean keeping my HR between 140 and 150 for the first mile, raising it to 150-160 for the second and keeping it above 161 for the final, fastest loop. Boy, was I in for a surprise.
I had gotten so out of shape that even a sludgey, slogging pace skyrocketed my pulse up past 170 beats per minute. I usually reserve this kind of effort for an serious sprint. I was out of breath after the first 10 meters. Worse than that, I was embarrassed. My runner’s ego was taking a dive…or maybe a canon-ball, or a belly-flop.
It’s silly to be embarrassed while I’m running, I know that. It’s not like any of the other park-goers are looking at me and wondering, “Why is that girl running so slow?” If they are, they’re not going to say anything outloud. But, just in case they do, it makes me feel better if I have a comeback ready. Yesterday, my planned snappy retort was, “Hey! Give me a break! I’m recovering from surgery!” I’m sure you realize, as I do now, that I was really talking to myself.
I listened. I gave my self a break and stopped worrying about my speed or my heart rate. Instead, I scrounged around in my brain for every scrap of advice Kass or anyone else had ever given me about how to run well. I held my head high and straightened my posture. I loosened my wrists and increased the distance between them. I imagined angling my elbows inward as they passed behind my back. I took quick small steps, about 90 of them per minute. I focused on getting all the used air out of my lungs, but let the in-breath come naturally. I relaxed my shoulders and strengthened my core. Pretty soon, I felt pretty good.
It didn’t matter that my belly was jiggling a lot more that I remembered, and that my chest was jiggling a lot less. It didn’t matter that I finished my first mile 4 minutes later than I would have been able to back in June. I think running is not the only part of life where good form makes up for a lot of other shortcomings.
My assumption that strangers wouldn’t actually comment out loud on my fitness activities turned out to be mistaken. As I rounded the north-east corner of the park, a homeless-looking man shouted at me across the green. “Hey! Keep smiling! You’re beautiful! And you’re getting a nice workout!” I did have one high-spirited sprint when my playlist finally shuffled around to Jem's peppy song Just a Ride. But this didn't happen during the sprint. This happened during one of my walking breaks.
It was a good reminder. It really doesn’t matter how fast I’m going. It’s just about getting out there and having the best run I can have, whatever that looks like. That’s what I did yesterday and I felt like a champion once again. Apparently, I looked like one too.
Wednesday, October 15, 2008
More About My (Ugh) First Biopsy
Ok, so I’m trying to write about my biopsy experience, because I want you to know about it. But I don’t like writing about it. Inside my head, I am writing kicking and screaming.
I was sitting with my right breast smashed between the mammogram plates. This is probably an uncomfortable position for anyone. I remember having the mammogram performed on my left breast…the one without the tumor…and it didn’t feel terrible, but it wasn’t a lot of fun either. Having it done to my right breast was another story altogether.
The whole reason I even knew about my lump was that it was pressing against a nerve or something. It felt weird inside my breast. It felt, not painful…but creepy and unpleasant. I didn’t like having that breast touched at all, because it felt so yucky.
Being squeezed so tightly between those two plates immediately kicked those sensations up an octave or more. It still felt creepy and yucky and squeamishly awful. Now, all those feelings, in addition to being much louder, were joined by flat-out pain. I mean like an “ouch ouch ouch please stop it!” kind of pain. I mean like a cussing out loud angry kind of pain. I mean like a stubbing your naked toe on a cinder-block or hitting your thumb with a hammer kind of pain. With the final crank that pinned me there, tears just leaped from my face. I felt like my head was a lemon wedge being squeezed over a glass of ice water. On minute I was intact, and the next my face was all scrunched up and stinging juice was just squirting out of it. I know that sounds gross and weird, but I am trying to be really honest about how it felt and what happened.
The technicians were trying to be kind and thoughtful, I know they were. But, I don’t think they had any concept of why this was so painful for me, or why it might have been more painful for me than it is for most of their patients, whose lumps are in less sensitive areas. I felt like they just thought I was a big baby. This was probably my own projection. They really were trying to be sweet. I just felt like they didn’t have the information they would need to really understand what was going on for me. I guess I could have told them, except that I was too terrified to talk.
So there I was, in the undignified and vulnerable position of being topless in a room with fully dressed strangers. I had a blue cotton hospital gown kind of draped over my other shoulder at one point, but it had fallen off into my lap. I’ve been topless in front of strangers before, but I usually feel like I looked pretty good, and that makes it better. I didn’t feel like I looked very good with my poor breast smashed out flat in front of me and tears streaming down my face. At least it was just me and two other women, for the moment.
I’m going to interrupt this posting to give you some Feng Shui advice. When you are arranging your office, or living room, or any space where you spend a lot of time sitting…you should always position your primary chair so that you can see the door into the room clearly. If you have your back to the door, you will suffer from a deep and perhaps unconscious uneasiness, because someone could come in and sneak up on you at any moment. If the only good place for the chair is with its back to the door, you can remedy the situation by placing a mirror somewhere in front of the chair, affording you an easy view of the door behind you, and helping you to feel safe and relaxed. This is good advice and you should follow it when you are arranging your furniture.
I wish they’d known about it when they set up the mammogram room. I wish I’d brought a mirror and hung in it front of me. Then, I might have noticed when Dr. V, the radiologist who performed my biopsy, joined us in that little room.
I didn't hear the door open. Neither of the technician alerted me to his arrival. I didn’t know he was there at all, until I felt a pair of hands on my naked shoulders.
I guess he thought it was okay to come up behind me and touch me like that because, after all, he was my doctor whom I liked and trusted. It wasn’t like he was some skeevy guy, right? What he (and Dr. H, with his unsolicited hugs) don’t understand is…the only real difference between a man you trust and some skeevy guy, is that the skeevy guy surprises you with sudden, uninvited physical intimacies.
So, I’m sitting there half naked, embarrassed, trapped, crying and hurting. I’m trying not to move my body even a fraction of a millimeter because even the tiniest motion increases the pain in my breast. Suddenly, I’ve got Dr. V gripping my shoulders and peering over my shoulder to spout cheerful salutary comments into my ear. I’m not just praying he doesn’t jostle me, I’m chanting inside my head, “Please don’t touch me again, please don’t touch me again, please don’t touch me again!”
It wasn’t a great attitude to have towards someone who was about to start drilling into my body.
I was sitting with my right breast smashed between the mammogram plates. This is probably an uncomfortable position for anyone. I remember having the mammogram performed on my left breast…the one without the tumor…and it didn’t feel terrible, but it wasn’t a lot of fun either. Having it done to my right breast was another story altogether.
The whole reason I even knew about my lump was that it was pressing against a nerve or something. It felt weird inside my breast. It felt, not painful…but creepy and unpleasant. I didn’t like having that breast touched at all, because it felt so yucky.
Being squeezed so tightly between those two plates immediately kicked those sensations up an octave or more. It still felt creepy and yucky and squeamishly awful. Now, all those feelings, in addition to being much louder, were joined by flat-out pain. I mean like an “ouch ouch ouch please stop it!” kind of pain. I mean like a cussing out loud angry kind of pain. I mean like a stubbing your naked toe on a cinder-block or hitting your thumb with a hammer kind of pain. With the final crank that pinned me there, tears just leaped from my face. I felt like my head was a lemon wedge being squeezed over a glass of ice water. On minute I was intact, and the next my face was all scrunched up and stinging juice was just squirting out of it. I know that sounds gross and weird, but I am trying to be really honest about how it felt and what happened.
The technicians were trying to be kind and thoughtful, I know they were. But, I don’t think they had any concept of why this was so painful for me, or why it might have been more painful for me than it is for most of their patients, whose lumps are in less sensitive areas. I felt like they just thought I was a big baby. This was probably my own projection. They really were trying to be sweet. I just felt like they didn’t have the information they would need to really understand what was going on for me. I guess I could have told them, except that I was too terrified to talk.
So there I was, in the undignified and vulnerable position of being topless in a room with fully dressed strangers. I had a blue cotton hospital gown kind of draped over my other shoulder at one point, but it had fallen off into my lap. I’ve been topless in front of strangers before, but I usually feel like I looked pretty good, and that makes it better. I didn’t feel like I looked very good with my poor breast smashed out flat in front of me and tears streaming down my face. At least it was just me and two other women, for the moment.
I’m going to interrupt this posting to give you some Feng Shui advice. When you are arranging your office, or living room, or any space where you spend a lot of time sitting…you should always position your primary chair so that you can see the door into the room clearly. If you have your back to the door, you will suffer from a deep and perhaps unconscious uneasiness, because someone could come in and sneak up on you at any moment. If the only good place for the chair is with its back to the door, you can remedy the situation by placing a mirror somewhere in front of the chair, affording you an easy view of the door behind you, and helping you to feel safe and relaxed. This is good advice and you should follow it when you are arranging your furniture.
I wish they’d known about it when they set up the mammogram room. I wish I’d brought a mirror and hung in it front of me. Then, I might have noticed when Dr. V, the radiologist who performed my biopsy, joined us in that little room.
I didn't hear the door open. Neither of the technician alerted me to his arrival. I didn’t know he was there at all, until I felt a pair of hands on my naked shoulders.
I guess he thought it was okay to come up behind me and touch me like that because, after all, he was my doctor whom I liked and trusted. It wasn’t like he was some skeevy guy, right? What he (and Dr. H, with his unsolicited hugs) don’t understand is…the only real difference between a man you trust and some skeevy guy, is that the skeevy guy surprises you with sudden, uninvited physical intimacies.
So, I’m sitting there half naked, embarrassed, trapped, crying and hurting. I’m trying not to move my body even a fraction of a millimeter because even the tiniest motion increases the pain in my breast. Suddenly, I’ve got Dr. V gripping my shoulders and peering over my shoulder to spout cheerful salutary comments into my ear. I’m not just praying he doesn’t jostle me, I’m chanting inside my head, “Please don’t touch me again, please don’t touch me again, please don’t touch me again!”
It wasn’t a great attitude to have towards someone who was about to start drilling into my body.
Tuesday, October 14, 2008
P.S. Regarding Surgeon Number One
My dear and fair-minded friend C. suggested I write this post-script so that you'll know Dr. H is a caring, considerate person...and not a thoughtless power-drunk monster.
When my mom returned home to Maryland after spending the month with me in California, there was a message waiting for her from Dr. H.
He called because he was concerned about me. He wanted to make sure I was getting the care I needed. I wish I could tell you exactly what he said, but I can't even remember if I actually listened to it, or if Mom just told me about it. He seemed to be feeling bad about our interaction.
Of course, by the time she got home to hear this message, I'd already had the mastectomy and didn't even have cancer anymore. I don't know why he called her instead of me. I'm sure I'd given them two or three local California numbers where I could be promptly reached. Mom probably jotted down her Maryland home phone when I asked her to fill herself in as my emergency contact.
This brings me to reason I think Dr. Rocco might have saved my life, and why I feel like Dr. H might not have saved it...had he been my surgeon.
Speed and Accuracy.
Dr. H had me waiting two weeks for my intitial consult, and then dismissed my diagnosis as "not really cancer." Maybe he would have ordered the same battery of tests Dr. Rocco did, but it's hard to imagine he would have. He didn't seem to take my condition seriously, and he certainly didn't seem to be in a hurry about it.
Dr. R saw me the SAME DAY I called, and insisted on gathering as much information as possible about my tumor, before making treatment decisions. Thanks to her insistence, we learned that I didn't just have one walnut-sized lump of high grade carcinoma, I also had a second, smaller lump of the same advanced degree. The mastectomy she performed 2 weeks later removed not just these tumors, but also the surprise third area of cancer in my nipple.
I can't help but suspect that Dr. H, in comparison, might have removed the first lump, but left me with the other two. I can't help but suspect I would have waited a lot longer than 2 weeks before being treated. I can't help but suspect the cancer that had already spread to three separate areas of my breast wasn't right on the verge of spreading to the rest of my body.
Of course, this is all just my feelings and suspicions. Who knows what really would have happened? I'm just so glad I didn't have to find out.
When my mom returned home to Maryland after spending the month with me in California, there was a message waiting for her from Dr. H.
He called because he was concerned about me. He wanted to make sure I was getting the care I needed. I wish I could tell you exactly what he said, but I can't even remember if I actually listened to it, or if Mom just told me about it. He seemed to be feeling bad about our interaction.
Of course, by the time she got home to hear this message, I'd already had the mastectomy and didn't even have cancer anymore. I don't know why he called her instead of me. I'm sure I'd given them two or three local California numbers where I could be promptly reached. Mom probably jotted down her Maryland home phone when I asked her to fill herself in as my emergency contact.
This brings me to reason I think Dr. Rocco might have saved my life, and why I feel like Dr. H might not have saved it...had he been my surgeon.
Speed and Accuracy.
Dr. H had me waiting two weeks for my intitial consult, and then dismissed my diagnosis as "not really cancer." Maybe he would have ordered the same battery of tests Dr. Rocco did, but it's hard to imagine he would have. He didn't seem to take my condition seriously, and he certainly didn't seem to be in a hurry about it.
Dr. R saw me the SAME DAY I called, and insisted on gathering as much information as possible about my tumor, before making treatment decisions. Thanks to her insistence, we learned that I didn't just have one walnut-sized lump of high grade carcinoma, I also had a second, smaller lump of the same advanced degree. The mastectomy she performed 2 weeks later removed not just these tumors, but also the surprise third area of cancer in my nipple.
I can't help but suspect that Dr. H, in comparison, might have removed the first lump, but left me with the other two. I can't help but suspect I would have waited a lot longer than 2 weeks before being treated. I can't help but suspect the cancer that had already spread to three separate areas of my breast wasn't right on the verge of spreading to the rest of my body.
Of course, this is all just my feelings and suspicions. Who knows what really would have happened? I'm just so glad I didn't have to find out.
Running Late
One great thing about not having a car is, I don't run around the house 10 minutes after I was supposed to leave, hunting frantically for my keys.
Instead, I'm tearing through my suitcase, and my pile of dirty laundry next to it, hollering, "Honey! Have you seen Phyllis?! I can't find her any where."
I know I can leave the house without her. I often do. But the nice thing about Phyllis is that she gives me a choice. If I can't find her, I don't have any choice. Not having a choice about whether or not my body looks normal in clothes makes me feel like there really is something wrong with me. It makes me feel like a victim instead of a survivor.
The longer I looked, the less my voice came out through my mouth and the more it started to come out through my nose.
"Where is she!? I have to find her because I'm starting to get whiny!"
From the other room, "No comment!"
A few more minutes went by while I scanned the bookshelf, the medicine cabinet, the top of the fridge. I took a deep breath and tried to sound like a normal non-panicked person.
"Baby, are you sure you haven't seen her? I can't find her I anywhere."
I don't know what kind of answer I was wanting or expecting, but this wasn't it.
"Um...have you checked the dogs' beds?"
Oh no. I flashed on a vision of my beloved little peach prosthesis, riddled with slobbery punctures. Of course. The puppies walk around all day chewing on fleece footballs and plush walruses. My squishy plastic breast must have seemed like quite an upgrade, especially if they got it right after I undressed last night. It would have been warm from my body heat, and smelling reminiscent of my right armpit.
(Persistant readers will remember that my right armpit is a lot smellier than my left one ever since the sentinal node biopsy altered my lymph system.)
I got down on my knees and rooted around on the big furry cushion by the front door.
"Not here!"
I did a thorough sweep of the plaid pillow next to the arm chair in the living room.
"Not here either!"
With one last place to look, I crawled under the desk to explore the padded area where the younger one curls up at night. And there was Phyllis, lounging contentedly like a sunbather at a nude beach. To my incredible relief, she was whole and healthy, and didn't have a mark on her.
Maybe it's weird to speak of Phyllis like a living thing, but it's hard not to. She's constructed on purpose to look like part of a healthy human. In fact, she's constructed on purpose to look like part of a healthy ME. That's how I've started to think of her, as an optional extension of my own body. I guess you could say we've successfully bonded, me and Phyllis.
The happy part about this story is that I found her.
The sad part about this story is that, even if the dog had chewed her up, unless she had been utterly shredded beyond cohesion or recognition, I would have worn her anyway.
Instead, I'm tearing through my suitcase, and my pile of dirty laundry next to it, hollering, "Honey! Have you seen Phyllis?! I can't find her any where."
I know I can leave the house without her. I often do. But the nice thing about Phyllis is that she gives me a choice. If I can't find her, I don't have any choice. Not having a choice about whether or not my body looks normal in clothes makes me feel like there really is something wrong with me. It makes me feel like a victim instead of a survivor.
The longer I looked, the less my voice came out through my mouth and the more it started to come out through my nose.
"Where is she!? I have to find her because I'm starting to get whiny!"
From the other room, "No comment!"
A few more minutes went by while I scanned the bookshelf, the medicine cabinet, the top of the fridge. I took a deep breath and tried to sound like a normal non-panicked person.
"Baby, are you sure you haven't seen her? I can't find her I anywhere."
I don't know what kind of answer I was wanting or expecting, but this wasn't it.
"Um...have you checked the dogs' beds?"
Oh no. I flashed on a vision of my beloved little peach prosthesis, riddled with slobbery punctures. Of course. The puppies walk around all day chewing on fleece footballs and plush walruses. My squishy plastic breast must have seemed like quite an upgrade, especially if they got it right after I undressed last night. It would have been warm from my body heat, and smelling reminiscent of my right armpit.
(Persistant readers will remember that my right armpit is a lot smellier than my left one ever since the sentinal node biopsy altered my lymph system.)
I got down on my knees and rooted around on the big furry cushion by the front door.
"Not here!"
I did a thorough sweep of the plaid pillow next to the arm chair in the living room.
"Not here either!"
With one last place to look, I crawled under the desk to explore the padded area where the younger one curls up at night. And there was Phyllis, lounging contentedly like a sunbather at a nude beach. To my incredible relief, she was whole and healthy, and didn't have a mark on her.
Maybe it's weird to speak of Phyllis like a living thing, but it's hard not to. She's constructed on purpose to look like part of a healthy human. In fact, she's constructed on purpose to look like part of a healthy ME. That's how I've started to think of her, as an optional extension of my own body. I guess you could say we've successfully bonded, me and Phyllis.
The happy part about this story is that I found her.
The sad part about this story is that, even if the dog had chewed her up, unless she had been utterly shredded beyond cohesion or recognition, I would have worn her anyway.
Good Enough
Once in Boulder, I made a fitting appointment at Hangar Orthotics and Prosthetics.
Susan, the kind, competent and exceedingly petite woman who answers the phone and manages the front desk, took me into an exam room and measured my arm with a yellow tape. She asked me which kind of compression sleeve I was here for.
I had no idea, I didn't even know there was a choice. She shrugged and made a decision without my input. I like to think she made the right one.
She copied my insurance card and told me she'd call me when the sleeve arrived.
A week later, I was back in the office to pick it up. Susan wasn't there that day, so I sat alone in the waiting room until Angela, the CPO, had time to see me. I don't know what a CPO is, but I know she is one because there was an article about her stuck up on a bulliten board near the front door. I also learned that she plays the banjo.
After a few minutes of waiting, I decided to look for the bathroom. I didn't find it. I gave up after I accidentally opened a door to another exam room where a patient was waiting to be seen. I didn't see the man's face. He was sitting kind of behind the door. But, I could see his leg, propped up on a chair. I could also see that he didn't have any foot at the end of the leg.
Like most people would be, I was horribly embarrassed to have opened the door to someone else's exam room. I closed it immediately and went back to my chair.
I imagine I am also like most other intact-bodied people in that I am uncomfortable when confronted with missing body parts.
You know how it is, you don't want to avert your eyes, but you don't want to stare right at their stump either. You want to act like you didn't notice, but not like you are insensitive. You want to appear cool, when really you are just clueless.
I asked myself, "Why I am so on-edge around amputees?" Maybe looking at their altered bodies triggers my own fear of injury and loss? Maybe their difference from me sparks a physical curiosity that feels socially inappropriate? Maybe I am struggling not to feel pity for them?
I don't know exactly. It's a complex issue. But, as I've noticed before, I don't need to really understand my emotional hang-ups in order to move through them.
What shifted for me that day was my sense of "otherness." Here I was, sitting in a room decorated with advertisements for artificial limbs and posters celebrating differently-abled atheletes. I wasn't here with a friend. I wasn't here to sell something. I was here to be treated. I was one of these people.
I couldn't help but notice that I didn't feel quite as embarrassed to walk in on that man as I would have before my surgery. Yes, I was still a stranger barging in on his private space. But we had something in common too. We were both patients in this place. We were both missing pieces of our bodies and here to be helped with the resulting health complications. We were on the same team; in the same club.
Yesterday I rode the bus from Boulder to Denver. A man whose left arm ended at the elbow was sitting behind me. I didn't pull out my usual cool-but-clueless routine. Instead, I threw him a goofy grin with an upward nod. I'm sure he thought I was some kind of weirdo, but for me it felt like a secret handshake. I wanted him to know that I'm like him...we are the same in one small way.
Now, I am not trying to compare loosing a breast with loosing an entire limb. Physically, I am able to do almost everything I could do before. Socially, my loss is nearly invisible. Obviously, there's a big difference between my story and that of the guy in the bus or the man in the exam room. But, we share something that most people don't, and I can't help but want to acknowledge that.
I think that's normal. The world is so big and we are so small. It's just nice to be able to separate the giant mass of humans into smaller groups. It's comforting to know what group you belong to, and to connect with others in the same group. At parties, we light up when we meet someone who loves the same music, plays the same sport, or collects the same kind of hand-painted Moroccan pottery as we do.
This urge to identify and reveal ourselves to other members of our various sub-cultures is even stronger when the group we belong to has a history of being riduculed, persecuted or pitied by the larger population. I think the urge is stronger because we feel safe with each other in a way that we don't feel safe with others.
I think that's what I was trying to say to the guy on the bus. I wanted him to know he was safe with me. I wasn't going to pity him or think he was strange because his hand was gone. How could I? I am missing pieces too.
But, I couldn't say it outloud. I couldn't say it outloud for the same reason the urge to connect is stonger than if we shared a hobby or a hometown. I couldn't say it outloud because we belong to a group that has a history of being riduculed, persecuted or pitied.
Thinking about it this way, it is suddenly clear why I've always felt uncomfortable around people with missing body parts. I feel like I'm put on the spot. I feel like I'm being tested. I know I belong to the group of people who historically DO the persecuting, riduculing and pitying. I feel like I'm being measured against that legacy and that the situation pre-disposes me to being found guilty.
But now that I've turned in my perfect-body membership card, I feel relieved of such judgement. Even if other people don't know that I'm permenantly excused, I know. They can give me any grade from F to A+, and it's not going to affect me. I didn't even sign up for this class.
This is just one more place where cancer has taught me something I should have known already.
I'm not just good, I'm good enough.
Whew. What a relief.
Susan, the kind, competent and exceedingly petite woman who answers the phone and manages the front desk, took me into an exam room and measured my arm with a yellow tape. She asked me which kind of compression sleeve I was here for.
I had no idea, I didn't even know there was a choice. She shrugged and made a decision without my input. I like to think she made the right one.
She copied my insurance card and told me she'd call me when the sleeve arrived.
A week later, I was back in the office to pick it up. Susan wasn't there that day, so I sat alone in the waiting room until Angela, the CPO, had time to see me. I don't know what a CPO is, but I know she is one because there was an article about her stuck up on a bulliten board near the front door. I also learned that she plays the banjo.
After a few minutes of waiting, I decided to look for the bathroom. I didn't find it. I gave up after I accidentally opened a door to another exam room where a patient was waiting to be seen. I didn't see the man's face. He was sitting kind of behind the door. But, I could see his leg, propped up on a chair. I could also see that he didn't have any foot at the end of the leg.
Like most people would be, I was horribly embarrassed to have opened the door to someone else's exam room. I closed it immediately and went back to my chair.
I imagine I am also like most other intact-bodied people in that I am uncomfortable when confronted with missing body parts.
You know how it is, you don't want to avert your eyes, but you don't want to stare right at their stump either. You want to act like you didn't notice, but not like you are insensitive. You want to appear cool, when really you are just clueless.
I asked myself, "Why I am so on-edge around amputees?" Maybe looking at their altered bodies triggers my own fear of injury and loss? Maybe their difference from me sparks a physical curiosity that feels socially inappropriate? Maybe I am struggling not to feel pity for them?
I don't know exactly. It's a complex issue. But, as I've noticed before, I don't need to really understand my emotional hang-ups in order to move through them.
What shifted for me that day was my sense of "otherness." Here I was, sitting in a room decorated with advertisements for artificial limbs and posters celebrating differently-abled atheletes. I wasn't here with a friend. I wasn't here to sell something. I was here to be treated. I was one of these people.
I couldn't help but notice that I didn't feel quite as embarrassed to walk in on that man as I would have before my surgery. Yes, I was still a stranger barging in on his private space. But we had something in common too. We were both patients in this place. We were both missing pieces of our bodies and here to be helped with the resulting health complications. We were on the same team; in the same club.
Yesterday I rode the bus from Boulder to Denver. A man whose left arm ended at the elbow was sitting behind me. I didn't pull out my usual cool-but-clueless routine. Instead, I threw him a goofy grin with an upward nod. I'm sure he thought I was some kind of weirdo, but for me it felt like a secret handshake. I wanted him to know that I'm like him...we are the same in one small way.
Now, I am not trying to compare loosing a breast with loosing an entire limb. Physically, I am able to do almost everything I could do before. Socially, my loss is nearly invisible. Obviously, there's a big difference between my story and that of the guy in the bus or the man in the exam room. But, we share something that most people don't, and I can't help but want to acknowledge that.
I think that's normal. The world is so big and we are so small. It's just nice to be able to separate the giant mass of humans into smaller groups. It's comforting to know what group you belong to, and to connect with others in the same group. At parties, we light up when we meet someone who loves the same music, plays the same sport, or collects the same kind of hand-painted Moroccan pottery as we do.
This urge to identify and reveal ourselves to other members of our various sub-cultures is even stronger when the group we belong to has a history of being riduculed, persecuted or pitied by the larger population. I think the urge is stronger because we feel safe with each other in a way that we don't feel safe with others.
I think that's what I was trying to say to the guy on the bus. I wanted him to know he was safe with me. I wasn't going to pity him or think he was strange because his hand was gone. How could I? I am missing pieces too.
But, I couldn't say it outloud. I couldn't say it outloud for the same reason the urge to connect is stonger than if we shared a hobby or a hometown. I couldn't say it outloud because we belong to a group that has a history of being riduculed, persecuted or pitied.
Thinking about it this way, it is suddenly clear why I've always felt uncomfortable around people with missing body parts. I feel like I'm put on the spot. I feel like I'm being tested. I know I belong to the group of people who historically DO the persecuting, riduculing and pitying. I feel like I'm being measured against that legacy and that the situation pre-disposes me to being found guilty.
But now that I've turned in my perfect-body membership card, I feel relieved of such judgement. Even if other people don't know that I'm permenantly excused, I know. They can give me any grade from F to A+, and it's not going to affect me. I didn't even sign up for this class.
This is just one more place where cancer has taught me something I should have known already.
I'm not just good, I'm good enough.
Whew. What a relief.
It's All About the Accessories
orthotics : The design, manufacture and installation of orthopedic appliances to support, straighten or iprove the function of a body part.
prosthesis (plural prostheses) : An artificial replacement for a body part, either internal or external.
The last time I saw Dr. Rocco, she asked me if I'd gotten my compression sleeve yet. I hadn't. I'm young and in pretty good physical shape. I'd only had 4 lymph nodes removed from under my right arm. I didn't think I really needed it.lymph node (plural lymph nodes) : (anatomy, immunology) Small oval bodies of the lymphatic system, distributed along the lymphatic vessels, that are clustered in the armpits, groin, neck, chest and abdomen. They act as filters, with an internal honeycomb of connective tissue filled with lymphocytes and macrophages that collect and destroy bacteria, viruses and foreign matter from lymph. When the body is fighting an infection, these lymphocytes multiply rapidly and produce a characteristic swelling of the lymph nodes.
"That's fine," she said, "You probably won't need it. But you need to get one eventually because you must wear it when you are on an airplane, and you should always have it with you if you are above 6,000 feet altitude. The change in atmospheric pressure increase your chances of developing lymphoedema."
lymphoedema : Swelling of the subcutaneous tissues caused by obstruction of the lymphatic drainage. It results from fluid accumulation and may arise from surgery, radiation or the presence of a tumour in the area of the lymph nodes.
"I guess I'd better go get one then," I responded. "I'm flying to Colorado the day after tomorrow."
Denver is called the "Mile High City" because it sits at an elevation of 5280 feet. Boulder is located at 5400 feet altitude. Jamestown's elevation is 6,926 feet. Nederland sits at 8236 feet.
I tried to get one at the same place where I got Phyllis, but they didn't have them in stock. They could measure me for it the next day. I'd have to take time out from cleaning and packing for a 6 week trip, borrow a car again, and drive back down to Santa Maria. What a hassle. Then, they could send it to me in Colorado, but that would mean I'd have to fly without it. Scary.
Initially lymphoedema may only cause cosmetic concerns or heaviness and difficulty with some movements. The presence of extra tissue fluid can also make the patient more likely to develop infection in the tissues (cellulitis). The lymph fluid itself is very rich in protein and is an ideal fluid for bacterial growth. This can occur even after a minor injury. When this occurs the arm can swell to a greater extent. It will become red, tender and painful and the patient will probably feel generally unwell. Treatment for lymphoedema needs to be intensive and lifelong. Lymphoedema cannot be cured, but it can be controlled.
I tried the other place in Santa Maria that offers them. They didn't take my insurance, but cash payment would only be $50. I could swing that, but, they didn't have them in stock either. Again, the person who does the measurements wouldn't be in until tomorrow. Ugh.
I asked Dr. Rocco if I could just use an Ace bandange or something. "No," she said, "You wouldn't know how tight to make it. You could end up making it worse."
Hassle. Hassle. Hassle.
At this point I felt really irritated that I hadn't just gotten one already. I had lots of time while Mom was here, and a car, and someone to help me deal with all this stuff. Everyone (except me) knew I was going to need one sooner or later. I wish someone had suggested I go get fitted for a sleeve back when cancer was my full-time job. I hated scrambling to get one now, six weeks after my surgery. I was trying to get on with my life and do things that weren't all about cancer for a change.
So, I did what I usually do when I get that irritated. I just blew it off. I stretched a lot on the airplane. I sat with my elbows above my head and massaged my right arm with my left hand. It seemed to work. I didn't have any swelling. Thank goodness.
Monday, October 13, 2008
Where We Met
I love libraries. The first thing I do after moving to any new town is to go and get a library card. It took me a year and a half, and being pulled over and officially reprimanded twice, before I finally traded my Colorado driver’s license in for a California one. But, I got my Central Coast Black Gold Library Card the same week I drove out for my first job interview in Santa Barbara. I wouldn’t officially move across the country for another six months, but I could borrow as many books as I could carry from any branch between Ventura and Monterey.
As much as I love getting library cards is exactly how much I hate giving my cards up when I move away. Instead, I keep a folder at home filled with cards from every place I’ve ever lived as an adult, just in case I go back to those towns and need to check something out. When I travel to see family on the East Coast, I make sure to bring both my Frederick County and Hagerstown County library cards, just in case.
Of course, I try to keep track of due dates and turn things in on time. But, I usually keep things too long or loose them altogether. It’s funny, but while I balk at paying full price for a book or magazine at Borders, I will happily hand over tens and twenties and all the change in the bottom of my purse to the library staff. They are always so sweetly apologetic. “I’m afraid you have some fines.” They try to break the news gently. “You can pay it today if you want, or you can wait until next time.” They don’t want me to feel pressured or uncomfortable. I think they are embarrassed to take my dollars and cents. As I see it, they are librarian-angels, guardians and guides of knowledge, who toil blissfully in a realm far removed from the taint of filthy lucre.
But I’m not embarrassed to give it to them. I delight in supporting my favorite institution. Few things make me happier. In fact, when I am stuck in those awkward social situations where everyone else is putting their hands to their hearts for a patriotic chant, it’s libraries that save me. I look at that flag and think about all the people killed for it, and I cannot move my lips or open my palm. But, if I can, in those moments, remember our national free library system, my chest swells with pride and I pledge allegience just as loudly as anyone.
I’m telling you all this so you’ll understand how wide I’m smiling when I write that my best love story ever starts with,
“We met at the library.”
As much as I love getting library cards is exactly how much I hate giving my cards up when I move away. Instead, I keep a folder at home filled with cards from every place I’ve ever lived as an adult, just in case I go back to those towns and need to check something out. When I travel to see family on the East Coast, I make sure to bring both my Frederick County and Hagerstown County library cards, just in case.
Of course, I try to keep track of due dates and turn things in on time. But, I usually keep things too long or loose them altogether. It’s funny, but while I balk at paying full price for a book or magazine at Borders, I will happily hand over tens and twenties and all the change in the bottom of my purse to the library staff. They are always so sweetly apologetic. “I’m afraid you have some fines.” They try to break the news gently. “You can pay it today if you want, or you can wait until next time.” They don’t want me to feel pressured or uncomfortable. I think they are embarrassed to take my dollars and cents. As I see it, they are librarian-angels, guardians and guides of knowledge, who toil blissfully in a realm far removed from the taint of filthy lucre.
But I’m not embarrassed to give it to them. I delight in supporting my favorite institution. Few things make me happier. In fact, when I am stuck in those awkward social situations where everyone else is putting their hands to their hearts for a patriotic chant, it’s libraries that save me. I look at that flag and think about all the people killed for it, and I cannot move my lips or open my palm. But, if I can, in those moments, remember our national free library system, my chest swells with pride and I pledge allegience just as loudly as anyone.
I’m telling you all this so you’ll understand how wide I’m smiling when I write that my best love story ever starts with,
“We met at the library.”
Surgeon # 2
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.
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.
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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