Biopsy #1 (back up) July 3rd

This is what I wrote in my journal a few days after I had the biopsy that led to my breast cancer diagnosis. I started to go back and edit it, but I just gave up. It is really hard to think clearly about this whole event, because I was so upset about it, and because I am still kind of upset about it...apparently.

I was surprised when I read it yesterday to realize I had only gotten up to the part where they shut the door behind me. I thought I'd described part of the actual procedure, but I hadn't. I still haven't. I want to, it feels important. Also, I don't want to, it feels yucky.

When I checked in for the biopsy I was happy to see the nice ladies at the front desk. At this point I'd been in for a mammogram and ultrasound (related to the lump) and a chest x-ray and a CAT scan (related to a bronchial infection.) Everyone had been so sweet and funny and kind and thoughtful. I loved this place. The procedures were uncomfortable and sometimes painful. They could have been dehumanizing, but all the technicians and other staff were just so easy to connect to and enjoy. I didn't mind at all being stripped down and poked and prodded by them. They acted like I could be their daughter or their sister and they talked me through every step of every procedure, explained what they were doing and why and most importantly, when. As in..."I'm going to touch you right here, right now." They apologized for pinching equipment, cold instruments and goopy applications before they touched me with any of them. And I forgave them effortlessly.

I thought they were just going to stick a needle in my breast to get a small sample of calcified cell tissue...and I was still anxious about it. I introduced Maya to the front desk lady and joked, "When the doctor comes at me with the needle, her job is to jump him and..." I pantomimed grabbing the needle and turning it to face him. I laughed. I thought I was hilarious. I didn't mind letting everyone know how freaked out and anxious I was about this procedure. I didn't think they'd take me seriously. Maybe that is why they didn't let Maya in the room? They were polite. The front desk ladies smiled and giggled and Maya and I sat down to read magazines for what I hoped would be a very long wait. It wasn't. An older nurse (actually I guess she wasn't a nurse, she was some kind of technician) came out and called my name. She looked like a nurse. She wore all white and had some kind of upswept hairdo. I'm pretty sure she was wearing white sneakers.

Maya and I walked up to her. I raised my hand to let her know I was the lucky winner. She looked at Maya and asked me,"who's that?" This is Maya, I said. And I think I made my joke about her job was to protect me from the doctor. I had not started thinking of her as grumpy nurse yet, but I would soon. She looked at me with out laughing or smiling and announced that Maya would not be allowed in the room with me. When I asked why not...she said something that made no sense to me. This can't really be what she said, because it makes no sense, but what I remember is that she said they would be using local anesthesia and there would be too much radiation from it. As she said it, I couldn't make sense of it. I wonder if that is a tactic of hers to wrangle compliance from her patients. I'm up for arguing and making a case...but it's hard when you feel confused. Whatever she said just made no sense. I couldn't understand it and it took the wind right out of my sails. I suddenly felt defeated and just gave up. Ok, I shrugged. And told Maya to be right here when I came back. Which was silly, of course she would be...but I needed to say it. I felt sunk and alone.

I hated this whole experience. I do not want to repeat it with my surgery or any follow-up procedures. I'm so glad my Mom's coming today.

I followed the woman-soon-to-be-thought-of-as-grumpy-nurse through a couple turns of the hallway until we got to the 2 seater dressing room outside the mammography room. I had been here before and waited for a quite a while here with Hyde while the technicians got ready. There were only two chairs, situated across from two narrow dressing rooms each with a curtain and a locker. It was obvious I was going to be here at least long enough to trade by business suit for a hospital gown, and probably longer.
"Why can't Maya wait here with me?" I asked.
The nurse snapped, "She won't be any closer to you here."

I didn't point out that this was absoulutedy wrong and untrue. Here, she would be just on the other side of the door. I think anyone would agree that, barring some M.C.Escher/Wrinkle in Time situation, "on the other side of the door" IS CLOSER than "on the other side of the building." I didn't have it in me to argue this point at this time. I don't think I could bring myself to point out what little sense this woman was making, because I sensed she was going to be in charge of my biopsy experience and I couldn't face the possibility that I was surrendering my safety to a complete idiot. Who but a complete idiot thinks local anesthetic is radioactive and that the other side of the door is that same distance as the other side of the building?!? I sidestepped and said, "Yes, but she'd be with me now". Grumpy nurse sighed and heaved her shoulders and went to get Maya.

Maya is snappy and slippery. She is the friend who, if we were kids together, would be able to climb the fence or shimmy through the bars or the gate the fastest. She is charming and quick and knows what rules are for. She would be an excellent conman. I was not there, and I forget what they said, but I believe Grumpy Nurse found her wandering through the "employee only" hallways looking for me. I love Maya.

We chatted and read magazines together while I changed and waited some more. It was nice to have her there.

After they called me in and shut the door behind me, it was nice to know she was on the other side of it.

Nothing else was nice for what seemed like a long time.

Dear Kim,

I've been reading through my journal from July, trying to piece together an account of my initial biopsy, so I can publish it here. I'm still working on the biopsy story, but I found something else that I want to share.

This is an email that I started writing to my friend K. in Oakland. I never sent it because it got a lot more emotional and involved than I'd meant it to be. I really just wanted to recommend a book, share a soup site and tell her I love her. But it turned into a long letter telling her, and my other long-time friends, how much I needed them in the weeks after my diagnosis.

Here is what I wrote.

Dear Kim

Good writing has been my savior lately. When I am too freaked out about my mysterious upcoming surgery, it's great to just dissapear into another world of someone else's making.

One of my favorites this week was The Curious Incident of the Dog in the Nighttime.

My other favorite was your blog.
I hadn't checked it out in months and months, so I was able to spend several hours today reading up on your life and thoughts and looking at your sweet beautiful children.

Then my mom and I got into a whole discussion about the world of blogs, and spent some time surfing them. She found this one and saved it in my "favorites" file. It made me think of your monthly get togethers and I thought you might enjoy it too.

http://soup-aholic.blogspot.com/

I was reading your entry about old friends and realized I have known you since the spring of 1994. Fourteen years!

I can't think what I feel luckier about...the fact that we are still in touch, or the fact that I got to meet you and be your friend in the first place. I guess I'm double lucky!

This is one of those times when I want to say something really profound and meaningful, but it is so true and repeated that is just sounds trite. How do you explain...without sounding cliche...that new friends are good but old friends are better?

Losing my job and car along with my illusion of youth, beauty and perfect health all in one day left me feeling like the rug had been yanked out from under me. I feel like I don't know who I am or what I want or what I deserve or what I dare hope for. I don't know what my body will look or feel like from week to week. I don't know how I will earn a living or even what my day to day schedule will be. I fear I may have to move, live with strangers, lose my house, do work I hate.

Admist all this confusion and despair, I have been bombarded with kindness and caring from every side. Dear and lovely people that I have met and become close to since I moved to California have shocked me with their openness and generosity. Their offers of support feel like a rain of glittering blessings.

As incredibly lovely as this is, it is also dissorienting. Where did this benevolent storm come from? In a way, it produces almost as much anxiety as the painful medical procedures, legal interviews and vehicular disasters. Blessings and curses shower down from sources unseen and I'm just dodging and catching to the best of my ability. I hope that I deserve the blessings and that I'll get to keep them. I pray I don't derserve the struggles and that they'll be over soon.

It brings up the question...which is worse; the bad things that are happening or the feeling that I somehow deserve them or have brought them on myself? I don't know if they can be compared, but I know this for sure; the nasty surprises are far more bearable if I can keep a solid hold on the idea that I am really and truely not a bad person, not a total failure and not a complete fuck-up.

When new friends call and tell me they love me and that they'll be there if I need them, I'm thrilled and terrified. I cherish their sweetness. I re-read their e-mails and replay their voicemails with a measure of tenderness, graditude and amazement that I had previously reserved for passionate love-letters. But I worry too...will they take it back when they find out how wretched I am? Will they withdraw their offers of car-rides and guest rooms, groceries and laptops when they see how little I am helping myself? What if they knew the truth?

I sleep until I can't sleep anymore. I eat until I can't eat any more. I ignore phone calls and don't do any research. I complain about my doctors. I loose my temper and storm out of their offices. I don't shower. I don't dress. I pick my scabs and ignore my toothbrush. Certainly this is not a person they would reach out to help. They'll realize their mistake soon enough.

But when old friends call and tell me that they love me and that they'll be there if I need them it goes straight to my heart. When they tell me I'm going to be okay, I have to believe them. They've known me for 10 years or more. They've surely seen me at my stupidest, cruelest, tackiest and most careless. That they still love me means that somewhere deep down, I must really be okay.

And if I'm really okay, then I will probably continue to be okay. Even if my breast is removed, I'll be okay. Even if I have to go back to waitressing, I'll be okay. Even if I never have another date and spend the rest of my life single, I'll be okay. Even if I never make another friend, I'll be okay.

Kim, Heather, Raven, Karen, Ann, Thank you so much for helping me notice that the ground was still under my feet after the rug was gone.

I love you.
I love you.
I love you.
I love you.
I love you.

I hesitated to publish this, because I don't want my newer friends to feel like I don't absolutely worship and adore them. But, newer friends, you know who you are and you know how much I love you, don't you? If you don't, please call and ask and I will tell you!

Kim's blog reallly is wonderful. Maybe she will leave a comment here with the address? I don't think she'd mind if I shared it...but I would hate to make a mistake about that. Please, Kim...can we have your blog address?

The Terrible Things I Dare Not Say

Whew! It is exhausting to try and write about stuff that I have strong feelings about. My mind just swirls and swirls and it's so hard to nail the words down in any kind of order that is going to make sense.

My first biopsy was one of the worst experiences I have ever lived through. Thank God, I have never been raped, or beaten or held captive against my will. I am embarrased to even type those words. I feel like I am being horribly disrespectful and melodramatic to even mention such terrible things in a paragraph about my own lucky, priveleged life. How dare I compare my experience to that of people who have deeply, seriously suffered!?

But, I want to be totally honest about my whole cancer experience, and these are the feelings I have about that mammogram guided biopsy I had on my right breast in early July. These are the thoughts that run through my head when I try to think about how to explain it to other people. It was like being raped, or beaten or held captive against my will.

It was just awful.

I've written about the actual day, although I have not posted anything yet. As usual, I've tried to be honest and pay attention to detail. Also as usual, I laugh out loud when I read it back to myself. Everything seems so surreal and ridiculous. But, unlike my other stories, this one sounds bitter and blaming.

That's why I haven't published it here, yet. I'm still trying to work it out in my own head and heart, so I can get to a place where my perspective on the event feels like something that would be useful for others, not just cathartic for myself. Also, I don't want to criticize or offend the wonderful people at the place where I had the procedure. They are wonderful and it was really not their fault.

In an effort to digest the experience, I keep asking myself, "What was so terrible about it?"

In answer, I keep returning to the simile of being raped, beaten or held captive. In each of these circumstances, the physical event itself causes only part of the trauma. The distress reaction could be signifianctly mitigated or exacerbated depending on the level of surprise, trust and consent involved in the interaction.

Rape is a powerful example. The same technical act, with forwarning, agreement and assurance of safety would be something quite different. Imagine being asked, "Would you like to do this here, now and with me?" Imagine that the freely given honest answer is, "Yes!" Suddenly, a criminal act requiring multiple therapy sessions to start recovering from, becomes the highlight of a romantic weekend for two. ( I don't mean to sound flippant about rape. I am NOT trying to downplay the seriousness of sexual assault. I am trying to illustrate the magnitude of expectation, familiarity and permission.)

Regarding captivity, I'm not going to try and imagine the boredom and terror of prisoners or kidnap victims. I don't need to. Regular daily life is full of situations where we agree to remain in a position or location that we don't really want to be in, and it's not so bad. It's not so bad because we were given a chance to agree before hand on exactly where we would be and for how long. We read insipid magazines in uncomfortable chairs while we wait for our name to be called at the doctor's office. We lay down in the chair for the dental hygenist, though we'd rather be out for a walk. We cram into the window seat though we'd rather have the aisle, and only leave our seats when the flight attendent says we can.

But, if the situation changes, so does our response. If we were told we would might have to wait for an hour before the doctor could squeeze us in, we serenely do so. But, if we were told we would only wait a few minutes, we are in a state of extreme agitation by the time the minute hand starts to close in on a full circle. If the hygenist who told us we didn't have any cavities did so in a tone that made us doubt her, we are irritated when the dentist looks in and announces that we do. But, if she told us with an earnest, caring expression that made us really believe her, then our irritation is blended with confusion and dissapointement when it turns our she was wrong. And on the plane, you take full responsibility for entertaining yourself during the four hour over-land flight you paid for. But, it's not a pretty picture if you wake up from a little nap, look down through your window at an unending expanse of ocean and your watch says it is now two hours past the time you should have landed.

My other turn-to description, "It was like being beaten," is the least maleable, and perhaps the most accrurate. It is hard to imagine a situation in which you would agree ahead of time to be slapped in the face, kicked in the head and punched in the eye. Of course, it would have to be someone you really trusted, or you would never agree to it. And if there were such a situation, imagine how much worse it would be if instead you ended up pinched on your ass, shoved against a wall and kneed in the groin. It's not even that one kind of abuse is inherently more violent than the other. It's just not what you agreed to. Also, please remember, it wasn't a total stranger. It was someone you really trusted, and would probably need to trust again in the near future.

From my limited perspective, having a breast-biopsy really does seem similar to being beaten because they both involve physical pain and discomfort that, unlike sex acts and confinement, no one would agree to under normal circumstances. They also results in bleeding and bruising. On the other hand, being trapped is kind of similar because the mammogram clamp is holding your body in an unpleasant position for far longer than is agreeable. Finally, I do think it was a little bit like being raped, because you end up half naked with strangers who are grabbing and hurting your sexual parts.

Okay. So maybe I'm not being disrespectful or overly-dramatic when I say that my first biopsy was like these three things. Maybe I actually have a right to say that. Maybe I am not being an awful, selfish, oblivious, insensitive person. Or maybe, I am still reeling deep inside my personal emotional response to that afternoon and maybe nothing I am saying is making any sense.

Let me try again. Here are the main points that I am trying to make this morning.

1. It sucks to be feel like you've been mislead about what you are agreeing to let someone else do to you.

2. It sucks even more to feel like you really trusted that person and now you don't.

3. And it really really really sucks to feel like you are being forced to do things you never agreed to at all.

Of course, all of these things are that much worse when you didn't get a good nights sleep or eat a good breakfast becauase you've been tossing and turning at night and have no appetite since you started wondering what you will do if it turns out you have cancer.

Aside from that, I tell myself that these problems could have been eliminated if I'd asked the right questions or done the right research. But, if you've never had a lump before, or a mammogram or a biopsy, you don't know what to ask. You have no context. At least, I didn't. You don't know to ask things like, "Doctor, when you say you're going to use a needle...do you really mean something that could core a small apple?" Or, "Doctor, when I feel stuff dripping down my naked chest, what will it be and will it stain my pants?" Or, "Doctor, how cold will it be in the room and will I be able to reach a tissue if my nose starts running or will I just have to sit there and let the snot drip off my face?"

That's why I'm trying so hard to write about all this, even though my mind gets swamped trying to sort it all out and sometimes what I write seems stupid. I want other women going through breast cancer to be able to borrow my context. Hopefully they'll then be able to ask more intelligent questions than I was able to ask, and make more informed decisions than I was able to make.

I hope I hope I hope.

And I will publish the account of that first biopsy very soon. I promise.

Just like Jan

J. in Oregon ran a Susan G. Komen 5K race in honor of ME!

I'm so flattered and so tickled. (pink!)

I wonder what the people running behind her thought of my hippie-love-child name.

Maybe, instead of an individual survivor, they thought J. was celebrating the magic of the universe, the miracle of life, the everlasting yes.

Maybe she was. I wouldn't put it past her.

photo updates

I just posted a picture of the Lovely Liz, my cancer care coordinator. To see her, go back to the post "Rock Stars at Dr. Rocco's."

I also just added a photo of my prosthesis on the post "A Breast Named ... ?". It looks kind of desolate, just sitting alone on my friend A.'s green sofa. I wanted to add an "action" shot of it being sqeezed in my hand too...but my camera is broken! :(

Speaking of my prosthesis, I am about ready to announce the winner of the naming contest...so hurry up and send me your suggestion if you haven't already! (doublewhammydiary@gmail.com)

Cancer as a Career

I know I said I don’t want to be a sales rep anymore. I know I said I want to be a journalist. But, when Liz at Dr. Rocco’s office told me about the Oncotype DX position, I couldn’t help but feel excited.

Kareem, the rep that visits their office, asked her to pass his card on to anyone she could think of who might be a good fit for the job. Right away, she thought of me!

Oncotype DX is a diagnostic tool developed by Genomics Health. It’s designed to help determine the most effective treatment plan for women with Stage I and II breast cancer. The product is doing well, and they are expanding their sales force in California. The new Central Coast position would cover San Luis Obispo and Santa Maria counties, as well as Fresno and Bakersfield.

It would be a LOT of driving. I would hate that. But, it would be a great fit for me otherwise. The lure of that corporate paycheck… not to mention a car and HEALTH INSURANCE…is awfully strong.

Here’s the letter I wrote explaining they should hire me.

Dear Hiring Manager at Genomic Health,

I bet we have something in common. You must be excited about the current success and expansion of your sales force. I’m excited too. This career opportunity perfectly fits my own qualifications and interests.

For the past two years, I’ve enjoyed great success as a pharmaceutical representative on the Central Coast. In this time, I’ve excelled at developing great relationships with practitioners and their staff. I’ve effectively managed a 250 mile territory requiring frequent overnights and meticulous planning. I’ve absorbed vast amounts of technical scientific data and polished my ability to succinctly and convincingly communicate complex ideas.

It’s obvious to me that these experiences and skills would translate beautifully to a position as a Oncotype DX representative.

On a personal note, I am a breast cancer survivor myself. This influences my interest in your open position three different ways.

First, I have a candid inside perspective on how health care providers view Genomic Health. Yesterday, I asked my oncologist what she though about Oncotype DX. She enthusiastically replied, “That’s the wave of the future!” My surgeon and her staff are all similarly convinced that Genomic Health is a forward thinking company making a valuable addition to the array of diagnostic options available to their patients. This is exactly the kind of organization I would be delighted to represent.

Second, I’ve already spent several months this year researching breast cancer, and plan to continue learning all I can. I have a penchant for efficiency and would be delighted to leverage my budding expertise on this topic into a career qualification.

Third, I clearly remember how terrified and confused I was during my diagnostic procedures and surgeries. Knowing first hand how important it is for patients and their providers to feel confident in their treatment plans, I would derive deep satisfaction from helping other women like myself.

Thank you for taking the time to personally review this letter and my attached resume. I look forward speaking with you as soon as practical.

Sincerely,
Mage Morningstar

I called Kareem a few days later asking if he received it okay. He did, and he passed it on to his supervisor. However, he said I’m not really qualified for the job. One of the basic requirements is “oncology experience.”

If I don’t have oncology experience…who does!?

Maybe they will make an exception for me, considering my life experience. But, if the corporate culture at Genomic Health is so rigid that they can’t do that…I don’t want to work there anyway.

My Dream Job

The Tuesday morning after my double whammy I woke up and looked at the clock. It was close to 7 am, later than I usually sleep, but still early enough to get up and be ready for work by 8.

“Except,” I thought to myself, “I’m fired and don’t have a job to go to.”

I just stayed in bed. I looked out the window. I looked at the ceiling. I put my head under my pillow and looked at the inside of my eyelids. I didn’t get up because I didn’t know what to do. I couldn’t figure out what made sense.

After half an hour of tossing and turning and wondering what to do…I remembered the other important news from Monday.

“Oh right. I have breast cancer.”

Have you ever woken up in a strange bed, wondered where you are, and then remembered that you are on vacation? Have you ever woken up, wondered what day it is, and then remembered it was your birthday? Have you ever woken up, wondered who is in the bed with you, and then remembered that you married the woman of your dreams yesterday?

This was the opposite of all those feelings.

I think it’s funny that I spent 30 minutes fretting about my joblessness before I even remembered about the cancer. Whatever part of my brain handles my denial function seems to be working just fine.

Freshly cognizant of both my new challenges, I became even less able to figure out what to do. I didn’t want to get up and get showered and dress. What for? I didn’t want to do yoga or go running. My healthy, active lifestyle had obviously failed me, so what was the point in continuing? I didn’t want to eat. The only thing that sounded good to me was cheesecake and oatmeal cookies. These things were not in my kitchen, so why go in there?

My car had been taken away, so I couldn’t drive anywhere. My computer had been taken away, so I couldn’t watch a movie or check my e-mail. My future paychecks had been taken away, so I couldn’t spend any money. I’d been so out-of-it yesterday, that I’d plugged my phone charger in upside down, and broken my phone. I couldn’t call anybody. I didn’t want to anyway. I didn’t want to do anything.

Finally, I had a good thought.

“I could write in my journal,” I told myself. “That makes sense.”

That morning and every morning following, writing in my journal always felt like it made sense, even when nothing else did.

I started writing for hours each day. When I thought about getting another job, I just felt irritated. I didn’t want to get a job! I just wanted to read and write all day long.

I thought about going back to school. That’s all school is…reading and writing. I like school. I’m good at it. But, I am still paying off my student loans, and I hate being in debt. It would only be a temporary solution anyway. Sooner or later I’d graduate and have to get a job again. Ugh.

Recently I’ve started thinking there might be a way I can keep reading and writing everyday and not have to get a job at all. Other people get paid for writing, why can’t I?

Saying, “I want to be a writer,” sounds silly to me. Like, “I want to be an actor.” Or, “I want to be a fashion designer.” Or I “want to be a rock-star.” I know people do these things, and are successful at them, and I don’t mean to diss anyone who is pursuing a dream in one of these fields. But, I feel like I need a strategy and a plan, not a dream to follow.

I don't want to work a second job to support my ambitions. I don’t want to struggle and hope my sacrifices will pay off one day in royalties and recognition. I don’t want to pray for the day when I am hailed as the next Barbara Kingsolver or David Sederis.

I just want to have a nice little manageable career. I want to make a modest-to-decent living without doing work I feel conflicted about. I want to be able to afford a small but sunny home in the town I love, buy organic produce and send gifts to my relatives on their birthdays.

My dream job would afford me this kind of life. The actual work would have 3 parts.

1. Live a fabulous, interesting life.

2. Write about it.

3. Sell what I’ve written to magazines.

I don’t know if this is plausible. I don’t know if a person can really have a job like this. It seems too good to be true. But, I think if anyone can do it, I can. I’m really good at living a fabulous, interesting life. I think I’m pretty good at writing. If I’m not good enough now, I’m sure I can take steps to get better at it. Finally, I’m good at selling things. It seems like a perfect fit.

Whatever I end up doing, I know it will be different than what I’ve done in my past. After the last two months, I don’t think I can settle anymore. I just refuse to accept a life where I am doing anything less than exactly what I really want to do.

It’s scary to try and design my own career. It’s scary to wonder if I’m going to run out of money. It’s scary to wonder what other people are going to think of the choices I am making and the hopes I'm harboring.

“But really,” I ask myself, “What’s the worst thing that could happen?”

The worst thing would be if I got cancer again.

I can’t control that.

So, I’m going to be a freelance magazine journalist, because that is what I really really really really really want to do.

Where am I?

I decided to take advantage of my current open schedule and visit some friends in Colorado. I flew in on Wednesday and will be splitting my time between Boulder and Denver until at least November first.

What now?

Diane is really nice look at. She’s tall, with a great figure and beautiful posture. If it’s true that you should never trust a skinny cook, then maybe it is also true that you can safely turn your body over to a trim, fit and lovely physical therapist. She’s also got great style. When I met her, she was wearing a simple, but elegant, green top in a soft lightweight knitted fabric. It scooped low across her chest, revealing a black tank top underneath. The front had a few twists and pleats in it that added interest to the texture and tastefully accentuated her full bosom and narrow waist.

This was before I got my new prosthetic. I was wearing 3 socks that morning; two on my feet and one on my chest. I’m surprised I wasn’t jealous of her. Maybe I wasn’t because she was so extremely nice to me. Or maybe I’ll never be jealous of any body every again, with my new found gratitude for my own blessings. I hope it’s the latter.

I’m going to imagine it one step further. Maybe because I’m not jealous of other people anymore, I’ll loose any trace of worry about other people being jealous of me. Maybe this new subconscious state will free me to live the most wonderful life imaginable and become the most fabulous person possible? It’s obvious that most of us are holding back in some way. We let little worries get in the way of living our passions. We build our lives around fears and hesitations, as much as we build them around our hopes and dreams. I know I’ve held back. What would happen if I gave myself complete permission to have everything I want in life and to be a stunningly divine person? I know there must be a lot of reasons why I don’t do this. I think fear of outpacing other people is part of it. I don’t want to be a target for anyone to vent their own dissatisfaction and discouragement.

But none of my friends would do that! And if they did…I think I could listen to them lovingly without feeling bad about my own glorious life. Strangers might criticize me. People I don’t know very well might hate me for my good fortune. But, the people I love would mostly just be happy for me…and they are the only ones I care about.

This brings me to a question I’ve been flirting with since I got fired. What am I going to be, now that I’m grown up?

I don’t want to be a drug-dealer any more. I worked my ass off for 18 months to get my first job in pharmaceutical sales. For a year and a half I researched and networked and applied for jobs on-line. I wrote and re-wrote resumes, cover letters, and 90 day action plans. I drove from Colorado to California a dozen times for interviews, sleeping in my car and showering at Twenty-Four Hour Fitness. I stalked job fairs and harassed friends for contacts in the industry. All this time, I had to keep producing top numbers in my Deep Rock Water position, because current sales success was a necessary asset in the minds of hiring managers.

Finally getting hired at Ortho-McNeil Neurologics didn't give me a chance to slow down and savor my achivement. I had been told, and it is true, “You work your ass off your first year in pharma!” The products and the political climate surrounding them are so complex that on-the-job training is like mini-medical school, mini-law school and an intensive health insurance seminar all rolled into one. I didn’t mind. I knew what I was getting into and would have happily worked my ass off for another 12 months if I’d had the chance. Sadly, I was laid off six months from my hire date. I then learned, at this particular company, people loose their jobs every year in massive pre-holiday “re-organizations.”

I started my hunt all over and got a job at Boehringer Ingelheim Pharmaceuticals Incorporated. This was a change for the better. BIPI is a family owned German company, with a supportive people-positive corporate culture and historically few layoffs. I was happy there for a year and a half. Then they announced that they were considering layoffs. I wasn’t concerned. I worked in a different division and my job wouldn’t be affected. Also, they promised to do everything possible to avoid it.

As far as I can tell, “everything possible” included strategically firing people if a technically sound reason for doing so existed. I’d made a minor paperwork error in May, that came back to haunt me in July. I was fired for, as they put it, “falsifying records.” I’ve heard of several other people who were, like me, shocked to suddenly loose their jobs with BIPI. I hope they have all found it to be as positive a life-change as I have. I hope none of them got diagnosed with cancer on the same day.

Here are the reasons I don’t want to work in pharma anymore.

1. Even though I worked so hard to get and keep these positions, I seem to keep losing them. Further personal investment in this industry seems like a poor risk with little chance of paying off.

2. I’m bitter after loosing two jobs in as many years. I doubt I could summon genuine enthusiasm at an interview, and I refuse to fake it.

3. I’m sick of driving. I traveled almost a thousand miles a week in my company car. True, I was driving along one of the most beautiful corridors of highway in the U.S. and I never had to deal with traffic. But, all that road time makes it nearly impossible to keep a good work/life balance. Also, I was beginning to feel personally responsible for global warming; I filled up my gas tank every other day!

4. I was starting to have integrity issues. My recent manager kept encouraging me to use a study-based sales aid that boasted, “93% of patients taking the 80 millligram dose achieved their blood pressure goal!” This sounds great, but is a total misrepresentation of the data in the study. It inspired me to come up with this joke:

Q. How many drug reps does it take to screw in a light bulb?
A. It must take only one, because of all the people still standing in the room after the light bulb had been changed, 100% of them had been successful at it!

So, I don't have any answer yet to my "What do I want to do?" question. But, I do know this:

I can't live off my savings for too much longer. I don't want to sell drugs. I do want to have the most fabulous life imaginable.

Any suggestions?

Tamoxifen vs. Beets

I really like my new oncologist, Dr. Kennedy. Some people have been confused that I am seeing an oncologist now…when I don’t even have cancer anymore…and wasn’t before…when I had cancer.

I think this is how it works for most breast cancer patients. You see a surgeon first. Mine was Dr. Rocco. She and my radiologist, Dr. Vernacchia, examined all my diagnostic reports and decided what kind of surgery I needed. ( I guess in some cases it makes sense to have chemo or radiation first, but most of the people I talk to started out with lumpectomies or mastectomies.) After the surgery, you go to see one or both of two types of oncologists. You see a radiation oncologist if you need radiation. You see a chemical oncologist (I think that’s what they are called) if you need chemotherapy or other pharmaceutical treatment.

Because my three areas of cancer were all well-contained, and completely removed along with the rest of my right breast, I don’t need radiation or chemotherapy. (This is such wonderful news!) Dr. Rocco asked me to go and see April Kennedy so we could discuss Tamoxifen, a drug that might lower my chance of getting recurrent cancer.

http://www.cancer.gov/cancertopics/factsheet/therapy/tamoxifen

I already knew I didn’t want to take it. But, I respect Dr. Rocco so much, that I was determined to stay open minded during the discussion. After I met Dr. Kennedy, I respected her an awful lot too…so I really did try hard to see her point of view.

Before I met with her, I went through what has become, in just three months, a thoroughly familiar process. A friendly medical assistant weighed me, measured my height and took my blood pressure. I was thrilled to see I’d lost the ten pounds I gained in the four weeks following my diagnosis (I'm back to 164). I was happy to note that my blood pressure is still very low (104/69), but I was disappointed to hear that I am only five foot nine and a half inches tall. (I’m sure I remember being 5’10” and three quarters when I was a teenager.)

I only had to wait a very short time in the exam room before Dr. Kennedy appeared. She is tall like me, and fair. She wore no make up, and a pretty cloud of clean, but un-brushed, blond hair framed her friendly face. She smiled a lot and invited me into her office to talk. That was nice. I am sick of sitting on exam tables.

She gave me a lot of background information about breast cancer in general, my particular type of breast cancer, and all the treatment options I wouldn’t be needing. She seemed genuinely delighted for me that I was doing so well and had been so completely cured.

This was nice too, but I was getting antsy to get to the real topic of the day. I asked her straight out, “Should I be taking Tamoxifen?”

“Oh! You have to!” she answered without pause. She seemed so certain about it, I worried that we wouldn’t be able to have a good conversation. I really wanted to weigh all the risks and benefits before we decided for sure. I wanted her on my side, and I was afraid of making her and Dr. Rocco upset with me if I didn’t want to take this stuff everyday. But, my worry was misplaced.

Dr. Kennedy explained everything very carefully. Then, with equal care, she listened to my side. This is what I thought:

I was happy to hear that I would only need to take Tamoxifen for 5 years. I’d thought it was going to be an everyday-for-life medication.

I was happy to hear that it would reduce my risk of developing recurrent breast cancer by 50%. That’s great! My risk right now is about 1%. That is like standing in a room with 99 other people and knowing one of us will get breast cancer again. Taking Tamoxifen is like 100 more people pouring in, and still only one of us is going to get it.

However, this drug would also increase my risk of uterine cancer (!) from something like zero percent, to 1%.

I just couldn’t make sense of this. Why would I raise my risk of uterine cancer from 0% to 1% when I was only dropping my risk of breast cancer from 1% to .5%?

Dr. K seemed to think it was worth it because uterine cancer is very easy to detect. If you have it, you start menstruating at odd times. Then, they just go in and remove your uterus and you are all better.

I, however, am afraid I wouldn’t even notice if I was bleeding at the wrong time in my cycle. Even after two decades of having one, I am still in total denial about my period. Every 28 days or so, I feel a little queasy and think, “Gosh, what did I eat? I don’t feel so good.” A few hours later I notice that the toilet bowl looks pink after I pee in it. I puzzle for a moment, “Did I eat beets yesterday? Beets wouldn’t make me sick to my stomach, would they?” A few moments later, I always feel like I’m on a V8 commercial, smacking my forehead with the palm of my hand when I realize the truth.

Even if I could be totally assured of detecting it early, I don’t want to raise my risk of getting uterine cancer! I’d much rather keep my current risk of getting breast cancer. It seems similarly easy to detect early, now that I am on the lookout for it. Also, the treatment is less terrifying. Maybe if I still had two breasts, I might think loosing my uterus was a better deal. It would be, after all, an invisible loss. It wouldn’t change the external shape of my body.

But, since I’m already missing my right one, loosing the left one doesn’t seem like as much of a tragedy. After all, it would even me out. More importantly, it is a process I have already been through and therefore much less terrifying that having my uterus removed.

As I’m writing this, I can’t believe this is the choice it came down to. It’s like one of the hypothetical questions I like to ask my friends.

“If you had to eat the same three foods for the rest of your life, what would they be?”

“If you were paralyzed from the waist down, would you have your legs amputated so you could get around easier, or would you keep them in case someday you could be cured?

“Which would you rather have surgically removed, your breasts or your uterus?”

Because I chose “breasts!” we didn’t even talk about the other possible side effects of taking Tamoxifen. Dr. Kennedy said I made a very good point and she seemed to totally respect my decision.

After our discussion, we went back to the exam room and she checked my incision area for swelling or infection. She was also looking at it to establish a baseline because I am going to see her once a year from now on, just to get checked out. I will also be scheduling annual check-ups with Dr. Rocco once a year. So, I’ll be getting a manual exam every 6 months, plus a mammogram each July.

I think this plan, along with a rigorous schedule of self-exams, will be enough to catch any recurrent breast cancer early enough too keep it from being lethal. And if i get another malignant tumor, I'll just have a second mastectomy and be done with this whole mess!

I still can’t decide if I would have my hypothetically paralyzed legs amputated, but I know for certain that if I could only have three foods forever, they would be:

Brown rice (because I love it and it’s so healthy and versatile.)
Tofu (because it’s a good source of protein and healthy fat and also very versatile.)
and, believe it or not,
Beets!

A Breast Named...?

The technician at the orthopedics shop, Peggy, says sometimes it is so crowded there, with ladies trying things on, that they run out of private fitting rooms. She’s been tempted to just take a customer into the bathroom for their appointment. But, even though the bathroom is spacious and clean, the boss says, “NO,” to that.

I lucked out. On Monday it was just me and her, and Lupe who works at the front desk. Lupe is fabulous. She has high artfully shaped eyebrows and super-thick, super-dark, super-curling eyelashes. I couldn’t tell if they were extensions or the kind you glue on yourself, but they were certainly not her own. A rainbow of lipstick and eyeshadow further asserted that she was not a “natural look” kind of gal. I liked her at once. I also noted that someone who prided herself on being beautifully all-natural would be a bad fit as the public face of a shop that sells prosthetics.

Standing in the lobby, I asked Peggy some questions about how the whole process of getting fitted and supplied with a prosthetic breast worked. I was trying to figure out if I’d have time to get one before I left on my trip, or if I would have to have it shipped to me, or if I should just wait and find an orthopedics shop in Denver.

She tried to answer my questions, but kept missing the point. Also, she kept saying things like, “the patient needs to have an appointment.” I thought maybe she was just talking like that because artificial secondary sexual features are a touchy subject. I thought she was trying to avoid embarrassing me, or herself, or maybe Lupe.

When we both started to act a little frustrated, it dawned on me what the problem was. “Look!” I said, “I’m the patient!” I pulled my souvenir hospital sock out of my shirt to prove it.

Why did she assume I wasn’t the patient? Why did she look startled when I told her I was? Do I look too young? Do I seem too happy? Did I really do that good of a job shaping my sock that morning? I don’t know, but the minute she realized I was the one who needed her help, she stopped reiterating the necessity of appointments, transformed herself into a gracious hostess and led me immediately into a private chamber in this palace of prosthetics.

But, I was still confused. In the fitting room, she opened a cabinet full of clear plastic bins over-flowing with lingerie. I’d thought she would start with a measuring tape, and kind of wrap it around my existing breast. Instead, she waved her hand across assorted flowery support garments as if she were Vanna Off-White on Brassieres of Fortune.

I thought we were having another miscommunication. I told her I didn’t have my prosthesis yet, and asked if maybe I was at the wrong place. This is when I learned another amazing true fact about my new status as a breast cancer survivor. My insurance company will now foot the bill for my bras! These special, and probably obscenely expensive items, have secret pockets sewn into them to keep the breast from floating around and looking weird. After all, the whole point of having one is to keep from looking weird, right?

I chose a black one and a beige one, both in the same design. The fabric is silky and will look smooth, not textured, under a T-shirt. They are underwire-free, and fit perfectly.

(It must be kind of fun to go in there after a double mastectomy. You would be totally unbound from your genetic legacy. Instead of asking, “what size bra do you wear?” they could just ask, “how big would you like to be?” I know it would be expensive, but I really do think I’d want some in every size.)

Next, we started playing around with little jellied triangles in different sizes, shapes and colors. The one that matched my real one the most was kind of spread out at the edges. It added padding not just in the center of the bra cup, but up onto the chest as well, more like my real breast. But it was hard to position correctly, so I chose a more compact model in a monochrome medium-peach. It has a delicate nipple sculpted on front that would only show through a really flimsy top. It is slightly larger than my left one, just like my original right breast had been, so it seemed perfect to me. (Now that I’m writing this I wonder if the right one was bigger because it was growing tumors inside?)

Peggy slipped my boob of choice into the little pocket behind the cup of the black bra, drew the straps up over my outstretched arms and fastened the clasps behind me. I felt like Kirsten Dunst playing Marie Antoinette in that scene where she is frozen, reaching into the air, and other people attend to all the intimate details of dressing her. That scene, out of context, is strange and confusing. Maybe she’s really special, or maybe there’s something really wrong with her. Actually, even in context it is confusing.

My context has been confusing lately too, with so many gifts, so many flowers, so many caring phone calls and love notes. So much attention and generosity made me unwillingly wonder, am I really special or is there something really wrong with me? The answers were yes, and yes.

I think this is why I had such a strong reaction when I placed my own hands on my upper chest, and smoothed them down slowly until I was cupping my new bosom on both sides.

I didn’t expect to care. My lop-sided and scarred chest seemed totally normal to me by now. I hardly thought about it, except to notice how cool and self assured I was for not trying to disguise it. I’d gone to get the prosthesis because it seemed like part of the inevitable process. I wasn’t in a hurry to have it. I was just there on that day because it was close to my physical therapy office, where I’d just come from, and my oncologist’s office, where I was going. This seemed like a smart way to spend the ninety minutes between appointments. Also, I thought it would be fun to have; one more accessory to play with. I planned to keep it in a drawer and pull it out for parties or job interviews.

This shows exactly how much I still have to learn about myself and my healing process. Maybe Dr. Rocco was right to leave a little extra skin around my scar, in case I change my mind about reconstructive surgery later. I can’t imagine now that I ever would, but I couldn’t imagine on Sunday that I would fall in love with my strap-on tit.

With my hands gently squeezing this new, familiarly-full-feeling bra, I could not keep from crying. Like crashers at a party, uninvited and unexpected tears were suddenly hanging out in the corners of my eyes and dancing down my cheeks. My throat closed up and I just held my breath for a minute. It felt so G O O D.

Maybe it was because some part of my brain was finally able to understand that I am okay now. Maybe it was because I could tactically recognize myself again. Maybe it was just because after 20 years of having two breasts, I’d acquired a taste for having my body set up that way. I don’t know. I just know it felt G O O D.

It still feels good. I’ve worn it every minute, except while sleeping or showering. I even wore it on a hike up Madonna Mountain. That probably wasn’t a great choice. I don’t have a sports bra with a fancy pocket in it, so the prosthesis was pressed up against my skin and got all sweaty. Also, the sports bra flattens down my real breast, but my new one is less pliant. It stayed just as perky as ever. I looked more lopsided by wearing it than if I’d left it at home, but I didn’t care. Just having something there is so wonderful.

In addition to looking better, and feeling good to my hands, it pleases my chest too. The area around my incision is still really sensitive and a little painful. I continue to flinch if I get hugged too hard. Every morning, my first thought is still, “My chest hurts.” It’s a fleeting thought; I get up and everything is fine. Yes, I’m very close to being all better, but I’m not quite there yet.

When I used the sock to round out my figure, it hurt after a while. But my new breast is like a soothing balm. It’s delightfully soft, and holds my body heat. It’s like having a hot water bottle, or a tiny teddy bear, cozied up to my ouchie spot. It’s so comforting! I LOVE it.

Maybe it’s not true love. Maybe it’s just infatuation. Maybe next month I’ll look back and marvel that I wore this thing all day in the airport where no one cares what I look like. Maybe I’ll think the pleasure of a jaunty stride that sets both sides of my bosom bouncing is not worth the hassle of carrying this thing around. But, I doubt it. I think this is going to be a long term relationship.

Which makes me realize, I need one more thing. You’ve all been so sweet, asking me over and over again if I need anything. Well, here’s your chance to help me out.

I need a name! Does anybody have a good name for my artificial breast? I just can’t bear calling it “it” any longer. Please send me your suggestions. The winner will be publicly honored for his/her creativity and good taste in one of my future postings!

As always, you can comment here, or write me at doublewhammydiary@gmail.com

I can’t wait to hear what you come up with!

So Many Up Sides

It's weird to feel grateful for having cancer. I wouldn't wish this experience on anyone. And even though I'm totally healthy now, I wouldn't go through it again for ANYTHING. Yet, when I consider the portrait of my life since July seventh, it sure looks top heavy.

That's not to say there haven't been some downers. Yes, I had part of my body surgically removed. I'm still sore and tight and not completely healed. Yes, I lost a lot of sleep worrying about what would happen next. Yes, I underwent some deeply disturbing diagnostic procedures.

But, I feel so clear and confident now about what to prioritize in my life. I feel so acutely aware of the miracles and beauty constantly surrounding me. And even now, I continue to meet amazing people I wouldn't have had the chance to know otherwise.

Yesterday, while waiting in my oncologists office, surrounded by other cancer patients, I met a fellow survivor who glows with an inspiring zest for life. It was the best introduction ever. J. came up to me and said, "I recognize you from your blog!" How fun! I felt like a famous author.

That was also the day I met Dr. Kennedy. (see photo) I enthusiastically count her among the amazing people cancer brought into my life. I will write more about her later, and more about yesterday's other four medical appointments very soon.

I'm sorry I haven't written anything in the last week, and that today's post is so short. There is so much going on in my life all of a sudden, it's been hard to find the time. But, I should have plenty of it soon...and I've got LOTS I want to post about. So, don't give up on this blog!

New Medicine

I’m tired in my mind and in my heart. I want to be comforted and I know I’m not going to be. Instead, I have something that is probably more useful in the long run. I have the perspective that comes from looking at my scarred chest in the mirror. I like the sideways view. It’s dramatic. It's obvious that something has happened to me. I remember in those cave-girl books if you survived an animal attack, those scars became magical proof of your personal power. You had Mountain Lion Medicine or Black Bear Medicine. (That sounds like some kind of Native American appropriation, but I think it communicates the idea. Just to be clear, I am making the appropriation, not the author…Jean. M. something or other.)

What kind of Medicine do I have? Over-eager Cell Medicine? Curly-Haired Surgeon Medicine? Shiny Scalpel Medicine? What exactly attacked me? What did I survive?

They say they don’t know what causes cancer, but I think I know. I think it’s all the toxins in our environment. It’s the poisons we use to kill insects and fertilize our crops. It’s the plastics that we touch all the time. It’s the cleaning products we end up inhaling inside and the complex molecular dirt in our “fresh” air. Of course, there’s also a nuclear powerplant over the hill.

To quote the character Madrone in The Fifth Sacred Thing, “We are living in a toxic soup.”

I have Toxic Soup Medicine.

I also have strange dreams.

Last night I dreamt I was a 1950’s sock-hopper and I had a tall basketball playing boyfriend in a lettered sweater. He worked after school at a small local grocery-type store with a countertop deli. It sounds more “Pleasant-ville” than it was. In the dream, the scenery looked like a 7-11, and my boyfriend fondled my chest in public.

It was actually a sweet interaction. I must have been wearing some kind of prosthesis. He wrapped his arms around me and kissed me in a wonderful way. (I can’t wait to be kissed like that in my waking life!) Then, still holding me with his right arm, he caressed my shoulder with
his left, moving his hand lower and lower, until he was squeezing what would have been my right breast if I had one. Our eyes locked and we exchanged a look that told me he was just doing it to remind me that he knew about it and he didn’t care and he loved me and thought I was absolutely sexy and delicious anyway and I didn’t even need to wear the fake boob at all as far as he was concerned. He went back to work, stocking the dairy case items on the other side of the room. I swiveled around in my seat at the counter. I think I had a sandwich or a milkshake or something waiting for me. Suddenly I had a girl friend sitting there too. Maybe she was there during the kiss and the squeeze, but I wasn’t aware of her then. I wasn’t startled by her now. Dreams are an awful lot like being on Valium. I sighed and leaned my chin on my hands. “I think I’m in love,” I said. She asked who, and I answered, “with my boyfriend,” like it was big news because I hadn’t been until just that moment.

It’s funny to dream about wearing a prosthesis. It was a nice one, squishy. I don't even have one yet in real life. I haven’t been wearing anything at all inside my bra, except for once. I went to a baby shower for a friend of mine from work this past Saturday. I wanted to feel like I looked nice so I wore my favorite pink top. It’s a silky clinging fabric and the neckline only works with a certain bra that I have. That bra isn’t just a cropped and banded tank-top, like the ones I’ve been wearing. It’s got underwire and a structured cup. I don’t mind looking flat on the right side, but I don’t like the way I look with an empty, crumpled-up foundation garment. I looked like a plump bakery-shop muffin on one side and a day-old pop-over on the other. So, I stuffed my hosptial souvenier sock in it. It looked fine. I could tell that it was a smaller than my real one and a shape other than rounded…but I doubt anyone else could. Towards the end of the party, I whipped out my sock to show my friends. They insisted that, even with the sock in my hand, I still looked okay.

I couldn’t wear the sock and underwire combo for very long. It pressed against my scar and the pressure made me really tired on that side of my body. It’s funny. Sometimes I’m in pain from the surgery…other times I experience very localized exhaustion. It’s hard to explain. I just get to a place where I cannot DO ANYTHING using that side of my body unless I lay down (on the floor if necessary) and rest first.

Now that I’ve got the tape off and my incision is sealed up tight, I can, very lightly, scrub my chest in the bathtub. It feels super-weird. As I run the soapy sponge up and down, it is as if I have a big bubble over my scar. I cannot feel anything at all on the skin…but I can feel the pressure (ouch) underneath.

That's the reason I don't have a prosthesis yet. I'm still too sensitive to be measured for one. I'm not in big hurry. I've got lots of socks, and to be honest, I don't know how often I'd wear it anyway. Why should I? My friends can't tell. My soda-shop dreamboat boyfriend doesn't care. But most of all, I don't want to cover up my Medicine.

No More Tape

The last strip of bandaging came off in the bath this morning.

Ok. It didn't just come off. I peeled it off. Slowly, hesitantly, I tugged it bit by bit from my side to my center. With each milimeter that came loose, I examined my skin to make sure there was no open wound any more. There wasn't. All the skin had joined together and sealed shut. There was a smooth white line marking where these parts of me used to not touch each other.


As the tape came loose, so did my last irrational hope. Apparently, I believed on some level that when this white stuff came off...my breast would magically pop out again! I didn't know I was holding out for this...but I sure felt shocked when it didn't happen. No doubt about it. It's really gone.

Without my right breast, my chest isn't quite flat on that side. My upper ribs show through in weird diagnol ridges that I can't quite make sense of. The skin around the scar is wrinkled and puffy. I hope it's just from having that sticky stuff on it for so long. There is still some swelling underneath. It's hard to tell how much.

I have a tiny little mole just south of my new seam. I must've always had it, but I never saw it until now. I couldn't with my breast in the way! When I'm finished writing this I'm going to go get a mirror and take a good look at my other side. What might be hiding under my left breast?

This is disgusting, but I still have tacky smears of glue stuck to my body from the first round of post-surgery packaging. A lot of it has come off, but there are still a few stubborn little patches that hang on. Here is my advice for anyone else recovering from a mastectomy. Don't even try to scrub at it. Even though it hurts like hell, you might think it will be worth it to feel really clean again. It's not worth the pain because it doesn't work. I tried everything short of gasoline and nothing rubbed it off. Instead, delicately pinch the glue spot and pull it slowly away. Sometimes you'll just get a little spot of it. Sometimes a satisfying mini-strip of it will peel away, like a bad sunburn does. Sometimes you'll get nothing. The pinching can hurt a little. But, strangely, the pulling doesn't hurt at all!

I remember when I was first able to see the new shape of my chest. I could hardly stand to look at it. I was appalled. I was panicked. I was freaked-out. I think this was mostly because I was also in so much physical pain. While my nerve endings were sending a thousand messages that said something was drastically wrong and the visual information indicated that some part of my body was missing, alarmed revulsion was my inevitable response.

Today, I'm fascinated. I can't stop pulling up my shirt in front of the mirror or peeking into my V-neck sweater. It looks strange, but kind of cool. Edgy. Isn't symmetry a little old-fashioned anyway?

Cancer Made Me Pretty

This is true! I used to hate looking at pictures of myself. All I saw were flaws. My teeth are a funny color, and too small…except for the two front ones which are too big. My smile is odd shaped. My nose is too big, too narrow, too long. My chin looks lumpy. My hair is an awful over-bleached yellow with dark roots and I’m always overdue for a trim. My arms are flabby. My middle is too wide. My eyes are too small in sockets too deep. I look like an elephant when I’m standing next to normal-sized women. I can’t even talk about my butt, other than to say I’m grateful that most people don’t take pictures of it. When looking at photos with me in them, I usually keep from cringing by repeating the silent mantra, “This is NOT what I really look like this is NOT what I really look like this is NOT what I really look like.”

Ever since my diagnosis, it’s like I’ve had a miracle make-over. This is what I see when I look at pictures of myself now. I have great skin, smooth and creamy with just the right amount of freckles. My eyes are startlingly blue. I have a strong, interesting profile and a long graceful neck. My teeth are straight, my hair is flirty and my ear-lobes look delicious. Being so tall, I really stand out in a crowd…and my long legs and arms make me look thinner and more willowy than I really am. My new mantra arises spontaneously, “Wow! Is this what I really look like? Lucky me! Lucky me! Lucky me!”

These intoxicating new bouts of self-oogling aren’t just limited to snapshots. I was out hiking in a tank top the other day and I couldn’t get over my shoulders. They are so smooth and so nicely shaped. The skin stretched over them has such a peachy glow. I love the way they move slightly forward and back as I swing my arms. So fluid, so graceful, so rhythmically in balance with each other. I am an animal, muscled and fit. I am a fabulous machine, perfectly designed for my environment and tasks at hand.

In the bathtub I marvel at the length and sensuous shape of my legs. At bedtime, with my palms folded together on the pillow, I admire the elegance of my hands; the strength and delicacy of my wrists. In the mirror I squint my eyes and am amazed that there is a market for wrinkle cream and Botox. Those other women’s laugh lines must not be as adorable as mine!

This change in perspective didn’t creep up suddenly and leave me wondering, “When did I get so beautiful?” It was sudden. I became gorgeous the day I knew I had cancer and got more lovely with each diagnostic procedure between July 7th and August 8th.

I was talking to my friend M. the other day and she reiterated something I had read about women and their looks. M. and the article both talked about looking at pictures from 5 years ago, and always being surprised by how good they looked in the picture. They were surprised because they remembered feeling NOT that good-looking at the time. The writer seemed to think that this was because she got less attractive as the years passed.

I hated this article and the assumption that all women get uglier with each passing year. I don’t want to believe that comparing how much worse we look “now” is the only way to be able to appreciate how good we looked “then.” According to this train of thought, the way to really see how beautiful you are now, is to imagine how much you’re going to go downhill in the next half-decade. What a depressing thought! I can’t imagine that approach ever helping anyone feel better about themselves.

In addition to being a real downer, I think this attitude is inaccurate. I’m pretty sure I look better now at 35 than I did at any time previously. I’m more confident and more fit. Deep down I’m happier with myself and more able to express my true nature. I’ve got a better sense of style and more money to indulge it with. (At least, I did before I lost my job.) I felt all these things were true even before my double whammy hit. So, why is it that I too have always been able to look at older pictures of myself without the criticism that seemed inevitable when looking at photos from the present? I even remember this being true when I was a child. As a ten year old, I hated my school picture and wished it was as good as the one from kindergarten!

M. seemed to have a gentler view. She talked about the distance a few years gives us. Looking at snapshots taken today, we are too close up to see things properly. We take that information, recorded through the lens, as a comment or criticism. But, once some time has passed, and that face and body is not exactly ours anymore, we can see the frozen image as the neutral observation it really is. Things fall into perspective. Once we’ve moved on to a new look, we are able to apply the same compassion and appreciation to our own photo as we usually reserve for those of family, friends, or total strangers.

I like this theory a lot better! If this is case, then hypothetically, if we could magically obtain a photo from 5 years in our future, we would have a similarly gentle response. This theory also explains why I suddenly got so pretty.

I got some distance.

During the 4 weeks between my diagnosis and my surgery, I endured a battery of probing procedures. The appointments themselves were unpleasant. The time between them was worse. Every scan or biopsy was followed by a period of several limbo-ish days while I waited for the results to be announced. It was agony. The worst part was, non of the medical reports gave me any answers, they just brought up more questions.

Once I knew my tumor was malignant, I had to wait to find out how big it was. This would determine whether or not I got to keep my breast. Once I found out how big it was, I had to wait and wonder if the second lump they found was also malignant. Suddenly there was a possibility I might have more advanced cancer. I might need chemo or even die. Even after I knew that my second lump was the same kind of contained cancer as the first, I had to wait for the results of the genetic testing. This would determine whether or not I lost both my breasts, and maybe my ovaries.

I fretted. I agonized. I wallowed in worry. I struggled to get a hold on the ability to “let go,” which, of course, I only gained after I stopped struggling to “get a hold on it.”

For the first time in my life I felt completely relieved of the illusion that “I am my body.” Not only is my body not “me,” it’s not even mine. It’s just a vehicle that carries the real “me” around. I’m not sure who I borrowed it from, but I just got notice that I might have to give it back any day now. There’s no long-term lease. We don’t even have a month-to-month arrangement. It’s moment-to-moment.

Faced with this reality, how can I not be delighted? Look, I got a free body, and except for the one part that’s missing, it works perfectly and looks good too! I’m not being stuck up to notice it’s a lovely carriage, it’s not even mine. I just woke up one day and here I was, alreaady in it! No afternoon of dumpster diving in wealthy neighborhoods could result in such a score. No windfall harvest could be so abundant. No game show prize could be so priceless. It’s lovely, it’s free and it fits. I’ll take it! (Until it’s taken back.)

I wish I could share this pleasure with everyone I know who still cringes at their own photos. But, I don’t want to be like that woman who encouraged her readers to be positive by remembering the negative. I don’t want to be the kind of person who says, “Next time you are looking at your poochy belly, don’t imagine what it might be like if it were flatter, imagine what it might be like if it were GONE.”

I wish I could just give this to you. I wish I could just say it and you would believe me.

You look beautiful.

Really.

Absolutely.

Beautiful.

My Big Fat Thank You

Thank you, dear friends, for inviting me to live here in the sunny studio apartment at the back of your garden. There are so many things I love about it, that I couldn’t possibly write them all down. As a sample, here are some of the first things I noticed feeling grateful for when I woke up this morning.

Thank you for these huge windows. The view is great, but I like it even better when I can’t see the garden or the trees or the hills. If it’s dark outside I have 3-D night-sky-wallpaper, which is the very prettiest kind, I think.

Thank you for these French doors that swing so wide. I keep them propped open much of the day, and feel like I am living outside, except with all the comforts of living inside.

Thank you for this brick patio with the view of your garden and the hills beyond your house. I’ve spent several happy evenings sitting out there, either alone or chatting with friends. Last night I watched the slivery moon, all blurry through the fog, disappear mysteriously as if someone were erasing it bit by bit from the bottom up. It was too foggy to see the hill that it must have been setting behind, and it looked like a magic trick.

Thank you for the frogs that sing me to sleep at night. I know you didn’t put them there, but I wouldn’t have them if it weren’t for you.

Thank you for the comfortable couch. I thought I might need to bring a bed from my other house, but I’ve slept on the sofa for 6 nights now, and I’ve been very comfortable. It’s nice to have the soft back of it to curl up against. It’s a little bit less like sleeping alone.

Thank you for this wonderful deep tub. I don’t mind at all that there isn’t a shower. I look forward to my surgery-site being completely healed so I can soak in a long hot bath. But, until then, and for everyday water conservation, I just splash around in a few inches of hot water. The empty yogurt tub you left in there is the perfect thing for pouring it over my head. I bet that’s why you left it.

Thank you for the tiny blue tiles that cover the walls and floor of the bathroom. Sometimes I feel like little pieces of the sky have been carved up and glued together. Other times I feel like I am at the bottom of a magic swimming pool.

Thank you for appreciating good design and making this space that is filled with it. These clean lines and simple shapes help me to relax and focus every day.

Thank you for this little blond desk that was easy to move over to the window, even with my not-quite-healed-up-body. I sit at it for hours each day, writing in my journal, and getting closer to knowing what I want to do with my lucky self now that I am cancer-free.

Thank you for the beautiful art on the walls. I especially like the girl jumping rope in the yellow dress, and the man in the black jacket. She looks joyful and free. He looks solid and kind. They are perfect companions for this time of transition and new beginnings.

Thank you for this baby grand piano. I ache to be able to play it, but since I can’t, I’ve enjoyed having other people play it for me. There’s nothing like having live music in your home! Maybe someday soon I will even find someone who will play the songs that I can sing. Then, I will really be in heaven.

Thank you for this roomy closet full of shelves. I have plenty of room for everything.



Thank you for this beautiful floor the color of honey that is so clean and smooth. What is it made of? Bamboo?

Thank you for the two story playhouse and blue slide outside my front door. I haven’t climbed into the playhouse or tried the slide yet (maybe I am too big?) But, just seeing them every morning reminds me to be playful and light while approaching my new challenges.

Thank you for the wheel barrow you left in the garden. I used it yesterday to carry my new mini-fridge up the hill to the shop.

Thank you for the clothesline in such a handy spot. I love hanging my things out to dry in this abundant sunshine, rather than using the dryer. Everything I wear smells SO good.

Thank you for the use of your bicycles. I rode all the way home from Shell Beach yesterday, after dropping of a car I’d borrowed. I took the back way, which was beautiful. The day was perfect. The vineyards were deep green. The traffic was minimal. I re-taught myself how to pedal while sitting up straight and holding my arms straight out to the side. It feels like flying. I stopped at that little antique shop and café in Edna, but it was closed. I’d never really noticed it before. It’s funny how much more you notice when you’re not whizzing by in a car. I’ll have to go back someday when it’s open. Maybe with you?

Thank you for the use of your electric scooter and helmet. I haven’t used it yet. I think I might this Saturday. I am going to a baby shower at Upper Crust. A lot of my friends from work, whom I haven’t seen since I got diagnosed/fired will be there. I hate to think that they might worry about me or feel sorry for me. I love riding the bike and don’t mind that I don’t have a car right now. But, arriving on that super-cute scooter feels like a lot more fun. I think I’ll be adorable on it (I’ve never seen anyone on an electric scooter who wasn’t adorable) and being adorable just shouts to the world, “Look at me! I’m okay! Don’t worry! Everything’s fine!”

Thank you for repeating your gracious offer several times. It was hard for me to accept, knowing that there was nothing I could do to pay you back for such extreme generosity. I think I really know what humility is now, at least for me. Maybe each person has a different version of humility to learn, depending on where their pride lies? I have always been proud of being self-sufficient, competent and generous. For me, humility is has three parts. 1. Admitting I need help. 2. Accepting it graciously. 3. (This is last one is the most important and hardest part) Not feeling bad about myself because I don’t have anything of equal value to offer in return. Actually, I hope I can never repay you. I hope it will be impossible to repay you because you will never be as much in need of assistance as I have been lately. But, if you ever are, you know who to call! I’ll do anything I can; share anything I’ve got.

Thank you for choosing such wonderful young women to sublet your house to while you are gone. I miss you and wish you were here, but I think the fact that you are away helps me out a little too. If you were here, I’d love seeing you everyday, but I’d be anxious about overstaying my welcome. I’d probably be working hard to get independent again. Now, at least until February, I feel I can relax and take my time figuring out what I really want to do next. Some people might think that a place to stay is a gift of money, but really, it’s not. It’s a gift of time. Other than your friendship, which I am so lucky to have already, I can’t think of anything more precious and useful.

Why Don't They Make Bigger Thank You Cards?

I apologize for not posting over the last few days. I’ve been working my way through a very fat folder related to the stack of thank-you cards I want to write. So many people have sent me gifts and helped me out lately that I feel like a new bride returning from her honeymoon. I've had an excuse for putting it off, but now I've got some serious work to do. When you've received such bounty, writing thank you notes becomes more than just a little nicety that can be dashed off after supper. It’s a full time job!

For most of these generous individuals, I know what to say.

“The flowers were beautiful, they really cheered me up!”
“This book kept me feeling hopeful through those long nights when I was too worried to sleep.”
"I couldn't have navigated the State Disability Insurance website without your guidance."
“This is the biggest koosh ball I’ve ever seen!”

But there is one thank you note that troubles me. I don’t know what to say to these people. Maybe the problem is just that I can't find a card big enough.



Over two years ago I drove my little white Honda civic from Denver to the West Coast for what might have been the 12th time in 6 months. After a year and a half of creative and exhausting effort, I’d landed a pharmaceutical sales job in California! My new employer thought I already lived there, so I had to scramble. In a forty-eight hour whirlwind, I searched the newspaper, found a house, signed a lease, left my car in the driveway of our new home, and flew back to Colorado to fetch my sweetheart and a U-haul truck full of our stuff.

I hardly needed that plane to fly, I was soaring with joy. Sea air rushed in to fill the space under the plane's shining belly while the hilly landscape rolled out below us. The whole central coast was being offered to me as a gift-wrapped prize I had earned the right to unwrap every day. Through my plastic window, I could see world I that would be mine when I came back here; when I came back home.

There were the waves that I would surf! There were the trails that I would run! There was the bay that I would sail! There were the vineyards that I would drink! There were the orchards that I would eat!

The best part about this memorable take off was that I was not alone. I’d made friends in the tiny two-room airport! This nice couple and their beautiful, bright daughter lived here in San Luis Obispo. They loved it and agreed that I would love it too. I pointed at features in the landscape and they answered my questions as best they could. In San Francisco, we said a sweet goodbye. They wished me the best in everything and I wondered if I would ever see them again. It seemed possible. Everything wonderful seemed possible.

That was June of 2006. By March of the following year I had been laid off from the new job I’d worked so hard to get and my fiance was suddenly spending more time with the trainer from the gym than with me. (If you read “Cancer Is My Piano” you will probably recognize, as I am while writing this, that this was my boulder and tree stump.)

Even though my plans had crumbled, I didn’t regret the move. I was in love with the Central Coast. I ate fresh organic food from the dozen local farmer’s markets. I made new friends who loved art, the outdoors, and Scrabble. I spotted dolphins, whales, seals and otters without even trying. Best of all, after 3 years of binge and sloth in Denver, I was fit and trail-running again.

To celebrate my 34th birthday, I entered a steep and thrilling 8k race held in the breathtaking wonderland of our local state park, The Montana De Oro. (I don’t know how to put the little wiggly thing over the second “n” to make it into “montanya.”). Actually, the Pacific Coast Trail Run organizers don’t call these events races. They call them “Runs that aren’t races in beautiful places.” But, it’s like a race. There are courses mapped out, finish and start lines, and fellow runners to pass or be passed by depending on how hard you’d trained. I’d trained hard! When I crossed that finish line I felt like a champion. I felt like a super-hero. I felt like everything was going to be okay even though I’d been sobbing my way through every bedtime since St. Valentine's.

I was right to be so optimistic. That turned out to be one of the luckiest days of my life. That was the day I got two new families.

Right there at the finish line were my friends from the airplane! We talked for a while and they introduced me to another woman, J., who had also run the race that day. She was with her niece, C., who is now one of my closest and dearest friends. She’s the one who just spent a week at my house taking care of me post-surgery. To my inexpressible delight, I’ve been sort of adopted by her generous family. Not a week has gone by since my diagnosis that I haven’t gotten at least one fabulous blues-battling package from some corner of the West where her mom or aunt or cousin or mom’s-best-friend lives.

Meeting J. and C. would have been good fortune enough to earn that day a place among my lifetime list of “very bests.” But, that was only half the blessing. Maybe my personal angels work harder during my birthday?

Sometimes I imagine the life I’d be living if I hadn’t reconnected with S., L., and SL., (my friends from that first flight out of San Luis.) It is just, ugh, not worth thinking about. This was true before my double whammy hit and I moved into their home. They are just fabulous people. Maybe I’ve never known what I wanted to do for a living, but I’ve always known I wanted to grow up and be the kind of person who gets to have friends like this.

I am tempted to write a long string of paragraphs outlining their assets. I could easily spend the rest of the day describing how sweet, kind, caring, fun, creative, inspiring, honest, thoughtful, generous, supportive, interesting, intelligent and beautiful they are. I could then spend tomorrow listing all the ways my life is better because they are in it. But, what I REALLY need to focus on is writing them a big fat thank you note!

The Bumper-sticker Foundation

I've just weathered a small, slightly destructive storm. No one was killed, but I sustained a mild injury and all the structures in my life were swept clean away. I'm mostly healed up now, and ready to re-build. I know the first thing I need to do is put down a foundation. Since I want to build something sustainable, I'm determined to use local resources that are easily renewed.

The one thing I seem to have plenty of, no matter how much I use each day, is words. Words in my head, words in my mouth, words on the page, words on this blog...they're everywhere! And, while I may not call myself a christian, I can't deny the influence of the Judeo-Christian culture I've lived in almost all my life. Maybe that's why I feel compelled to start this way. Isn't there a passage somewhere that says, "In the beginning, there was the Word?"

It must have taken a real miracle of efficiency to pack all the necessary meaning into just one word. I can hardly come up with a good haiku, so I'm going to give myself a little more leeway. I think I'll build my life around twenty-seven. Here they are.

"How we spend our days is, of course, how we spend our lives."

"True freedom is never needing to lie."

"Everyone does better when everyone does better."


These are my three favorite quotes. The first one is from an Annie Dillard book I read over a decade ago. The other two are bumper stickers I saw at some point in the last 35 years.

So, right now, I'm going to start living a life that I love every day, not just on the weekends. I'm going to make choices that allow me to be completely in my integrity. And, I'm either going to contribute to a better world for everyone, or at the very least not make it worse for anybody.

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