Tuesday, March 15, 2011

The Haze

Since my big surgery I've been trying to write but couldn't. Arms hurt, soul hurts. So, now, exactly two weeks later, I have gathered enough eye-witness facts worth jotting down.  First, because this is what is happening how, we're a perfectly dysfunctional family. A second ago, before I retreated into my 3-year-old son's room to write, we were gathered in the living room. Here's the scene: I'm sitting by window smoking an indonesian clove cigarette and drinking a glass of pinot noir. In front of me is the 3-year-old, Lucas, watching Ice Age- The Dawn of the Dinosaurs (we watched it a million times before)... To the right is my beloved sister taking a respite of time on her computer, absorbed into ether, adjacent to her is my step son Ben. A 23-year-old marvel deep into so many drugs you could squeeze him in a hug and get a high equivalent to acid. We'll, I'm not sure about that - I never had acid... shame on me? But he's staring at the screen after setting me up with a set of earphones playing Nirvana's version of David Bowie's song  "The Man Who Sold the World". I'm sitting by the window. Andy, my husband and father of Lucas (3) and Ben (23 - the son in law) is staring into his computer screen as he so often does. Absorbed in work from a distant land, NY, San Diego, Easter Island? I don't know.
So here we are, a day after I had my first appointment with "The Doctors" at Mount Zion. Bandages were removed. I looked at my scars under the influence of a calming pill. Little Frankenstein dressed in purple surgical glue would do. Then they said, "sorry, we can't take the drains out yet". Okay, I replied in a haze. Went home, drains and all, leaking from the right side to the point my shirt gets wet. Oh, what a lovely night.
Proceeded to emulate what a regular night with the family would look like. Pain on my left arm and chest. They had "expanded" me. So we read "365 penguins", after me and Daddy had a fight that made my son cry.
The day before, however, right as I was leaving the doctor's office, I was stopped by a very tall blonde woman and her husband in front of the elevators... I had just returned from the bathroom. I felt bad, deformed, demolished. The purple scars had scared me. The crookedness of my body had left a small message (or big) on my psyche. This blonde woman held my arm gently so that I had to halt and look at the tall stranger in front of the elevators. She had a big smile. She looked deeply into my eyes and said she knew that look, the look I had in my face. "you have to excuse me but I have to say this".  She had had the same "reconstructive" surgery I'm about to have in two months, two years ago. She reassumed me the doctor was the best ever. And then showed me her cleavage, beaming, announcing her boobs were better than they had ever been. Bless her heart. It fell short of her showing me her nipples, which I know don't look quite as nice as her cleavage.  The husband smiled enthusiastically. I liked them. It was so nice of them.
I went home and cried all night.
Oh life, things pass so fast.

Tuesday, February 15, 2011

Falafel joint

 Last week I was having a really bad day...  It started with a hard morning of "arguing" with my 3-year-old about pretty much anything from milk to socks to how we were going to get in the car. Loud screaming was the soundtrack to the hours between 7-9 when I finally dropped him off at daycare and left feeling like the worse mother in the whole world. I arrived at work, slammed my door closed and proceeded to fret over the piles that seemed to be getting higher as the days before my leave seemed to be disappearing from my calendar magically. I wasted a lot of time worrying about not having time. I was clumsy with my body and thoughts,  dropped everything on the floor, and broke something on my microscope. I finally clunked over and leaned my forehead against scattered post-its on my desk while small tears streamed down my face. Then I heard a gentle knock on the door. I sat up with as much of a startle as a defeated body is able to produce, wiped my face without diligence and opened a crack of the door. Chris was standing there with his usual friendly expression and a sheet of white paper on his hand: "Hey, can I talk to you a minute about the data for this project you will discuss in the meeting this afternoon?" Then he looked a second longer: "You okay?" 

No, I wasn't okay and we went to get a cup of coffee while I explained to him that I had a diagnosis of some sort of unusual DCIS and was a wreck with the perspective of surgery, treatment, etc. All the while being a single mom at home for the time being, and feeling lousy at that too. He called me into his office and closed the door. We sat across from each other and I just sank in the chair sipping from my cup and gazing blankly at something on the floor. He started by offering to hook me up with some specialists in Stanford where he had gone to school but stopped dead on his track, came closer and held my hand: "What you are going through sucks. I'm so sorry...  Let me know if there is anything I can do to help. My boys can watch your little guy if you need help.You can count on us for anything. Anything. I mean it. (short silence) I guess it's full disclosure time. I had a downer this week myself...The MRI showed that the tumor spread over multiple spots of my brain... My surgeon won't get in there anymore. I cannot do any more radiation. My last chemo failed." Hell if that's a downer, Chris, that's a death sentence...

And he continued smiling: "Tell you what, there is a really good falafel place in front of the cancer center at Mount Zion." He then drew a little map of the place on a post-it, no street names on it, and made jokes about how the bad thing about having brain cancer is that you forget things... Once the map was worked out he then mocked his own bad days by demonstrating in a short sketch how he behaves when he arrives at the office and sees that little flashing red light announcing a ton of messages on the phone. He opened his own office door, looked towards the phone, exclaimed "oh shit" under this breath and then turned around and left again only to come back a second later and rest his forehead on his desk in the exact same way I had done earlier. He said I could come by his office when I was having a bad day with a box of Kleenex - we could give each other a hug since we had already watched the online training module on "Avoiding Harassment at the Work Place." We both laughed so hard that small tears came out of our eyes, both of joy and sadness. We gave each other a big hug and the day was set straight again. Thanks, Chris. That was the best falafel place I have never been to.

Wednesday, February 2, 2011

A brief note on statistics

One expert said to me yesterday....

"Briefly, you have a risk of recurrence and even a risk of invasive cancer, but no increased risk of mortality.  In other words, even though your risk is increased over those withtout a diagnosis of DCIS (age, race, socioeconomically matched) the risk is still so low that you don’t have any increased risk of dying of breast cancer compared to that population."

Call me crazy, by I know for a fact that if I do have invasive breast cancer than I am at increased risk of dying of breast cancer compared to a woman that does not have breast cancer... If having DCIS puts me at risk for having invasive breast cancer, then my little brain is thinking that I surely have a higher chance of dying of breast cancer than the "control population". I'm a scientist and I study cancer. I am, you could say, an "expert"  of sorts and I use stats to get the big picture. But I am also the person making a decision that will affect the rest of my living days (and that, arguably, will not be of any importance to the control population!).

The Merriam-Webster dictionary has the following chuckle-inducing definition of expert

1: obsolete : experienced
2: having, involving, or displaying special skill or knowledge derived from training or experience

What causes me to chuckle is the obsolete part of the definition because it is so true. Most experts these days have a lot of skill and knowledge but very little life experience. It is easy to grasp this when your breast surgeons are men, or women with intact breasts.Or when your child's psychologist has never had kids of their own...
In the world of inexperienced experts I could have 1.4 children...

And that's my obsolete expert opinion on the value of statistics.

Monday, January 31, 2011

So that's how it's like

You wake up one day and figure something is not quite right. The pit of your stomach is deeper and further away from your center than it's physically possible. And then there are thoughts swirling around like bats - who are not blind. Next thing you know you lose a dog, then a father. And only too soon you realize you're about to lose your breasts.

They say the breast is the symbol of womanhood. They are an integral part of your self-image and sexuality and joy de vivre in some weird and true sense. But all I can feel is "take them out of me" right NOW. And all that's left for me is now. And the only place I could ever possibly be is here - even if that's the last place on earth I want to be. And if I run, I will take all my body parts with me. And, worse of all, my mind too. And if I stay, heck, then I'm HERE. So, the time is now and the place is here. I have no choice. And I'm glad I don't.

There's a cute little Buddhist story I like very much. Gil Fronsdal told it in his dreamy voice:
"Imagine an ocean. In that vastness of water there is a blind sea turtle swimming aimlessly.  There is also a floating log with a hole in it. The probability of that turtle sticking its head through that hole when it comes up for air is even bigger than the probability you will be born as a human being. That's how rare this human life is."

And that's how I feel. I have no grievance of my body yet. All I want is to come up for air and stick my little turtle head through that log, once again. 
To note a few thoughts that occurred to me, in no particular order, after I heard the diagnosis of Ductal Carcinoma In Situ (DCIS):
- what? fuck!
- it's Just-My-Breasts and not My-Eyes-Or-Another-Important-Part-Of-My-Body
- couldn't I keep my nipples, at least???
- they can rebuild (?!)
- i'd rather tattoo tulips and tree frogs than an areola
- why is everybody feeling sorry for me?
- i want everybody to feel something for me
- I want to live
- Meggin told me to write about it
- I want to live
- I want to live

And I still do. Very much so.