Friday, February 25, 2011

Day 295: We're Off to See the Wizard

Sometimes when I sit down to write this weekly blog, I wonder how in the hell there can be anything left to say. There's no news on the cancer front, which is positive I suppose, and no really strange things have happened in the past week. Unless you count yesterday, when I was walking back to work after having lunch with a friend whom I haven't seen in about two years, as she was in town visiting. Out of nowhere, a guy who looked relatively normal put his hand on my head and quickly swiped it up as he was walking past me, all without saying a word or looking directly at me. This is hard to explain in words, and it was hard to explain to Gabe why this disturbed me--outside of this general theme wherein I don't like to be touched by strangers--until I said "it was like a scalping motion."

So that was disturbing. I'm not sure how that's related to cancer, though it makes me think I still look strange or these things wouldn't happen. I started to feel better about my overall ability to blend in after that weird experience at the bar that I wrote about in the last blog. When I went to vote, the woman at the polling place looked at my I.D. (the picture was taken maybe a week before Augie was born--I look huge!) and said "Hair's gone, huh?" I was about to say something along the lines of yes, I know, this wasn't my choice, when she went on: "Getting ready for the summer! I don't blame you! I'm sick of this winter." Then a waitress at a restaurant up north who knows what I used to look like but doesn't know I had cancer told me "that haircut looks really cute on you!" So perhaps I'm not such an obvious Cancer Girl as I thought.

I have been thinking about cancer not from my own perspective recently, but rather from other people's. Lenny has been asking a lot of questions about whether things happened "before we knew you had cancer." I always answer her honestly and then I say, but why does that matter? She never explains. It makes me wonder how different I am, how different I look, and what that means to my kids. I was looking for pictures of us before we were married so that I could show Lenny that I was not really that different even before she was born. I only found a few photos. There's a huge gap in the digital photo library between right after Gabe and I met in early 2003 and when we went to visit my brother in Hungary in 2005 8 months after we married. I think the photos just haven't been organized.

So I found this picture of me in a swimsuit, taken two months after Gabe and I met when we went to Baraboo, WI, for the weekend for his birthday. This was supposedly the trip when Gabe realized he wanted to marry me, though luckily for us he didn't say so because that would have freaked me out so early in the relationship. It had something to do with me being a nerd. The story goes that I was looking at the sunset and instead of saying something romantic, I asked him if he thought it was weird that the sun looks like it is moving down in the sky when really we are spinning away from the sun. Apparently this is the type of thing he wanted to say but didn't because he thought I would make fun of him. So when I said it, he knew he would ask me to marry him one day. About 8 months later, he did. Eight months after that, we got married.

Anyhow, I was getting ready for water aerobics right after finding this picture last night so I posed like the picture and had Gabe splice them together. The idea was to show that mommy is still mommy, pre and post-cancer. However, I didn't show Lenny, even though Gabe said, wow! you look the same! Because truthfully, I just don't see it. When I look at this picture, I think, huh. Those look like two totally different people. I was 27 in that yellow suit, I'm 35 in the blue one. I've had two kids in the meantime and a lot of life has happened. But that's not it. I just look completely different to myself. Looking at that young woman on the beach, I think, she can't see yet how life will change! She doesn't know that in just a few years she will get pregnant for the first time, but she will also have cells start to mutate in her body that will lead her on a path no one wants to go down. She is, quite frankly, someone else.

And it's this ability to separate myself from myself that leads me to think about technology, about this particular format that I have chosen as my own kind of selfish therapy. This computer is like my own little wizard, bringing this strange experience of mine into other people's consciousness at the same time that it brings me a little bit closer, somehow, to myself. It is because I write this blog that I don't feel that I need support groups or therapy. I can give voice to things that I would never say out loud, even if I was paying someone to listen. And because it is public, other people know I've said it, so it must be true. It's immensely helpful in that way, though as I've said, it's alienating too. Or maybe it's just cancer that's alienating, not the fact that I talk about it. It does seem like people talk to me and interact with me more now than when I was in the throes of chemo and I was miserable and looked scary, or if not scary, then at least bald.

While cancer is hard for those who are witnesses to it, I still contend it's infinitely harder for those who actually have it. There is so much to take in, so many decisions to make. Every aspect of it is overwhelming and it is so important to feel that you have information at your disposal. In fact, cancer is one of the more isolating diseases in modern times, due to the huge fear factor associated with it. And yet doctors all tell you right after diagnosis not to read, not to go online, to avoid the Internet.

These people have got to be kidding. On the one hand, I understand the sentiment. I would have never known that triple negative was "bad" if I hadn't looked online, because at Northwestern they focus on stage and grade, not type, when telling you about your chances of recurrence and survival. It might have been better not to know about the rare and aggressive nature of my type of cancer. On the other hand, no one told me much of anything, and I was desperately searching for answers. I have done so many convoluted google searches that I wish I had kept track of them.

I didn't do that, but I can discuss some of the searches that people have done that led them here. I know I've mentioned a few of these before, but I want to spend a little more time on the loaded word "searching" in this week's blog. I'm especially fascinated by the very general searches ("lumpectomy blog," "blog+lumpectomy," "bald woman") that lead folks here.

Why is this interesting? Well, I don't show up in the first 100 hits, or maybe even 500 hits--I didn't check that far. And I only see these search terms in my blog stats if someone actually views a page of my blog through the search. That either means that someone is looking for something very specific and is hell-bent to go through a lot of sites to find it, or it means that someone is spending hours looking through all the sites, poring over the words, trying to understand what she has learned about herself and her new life. Either way, it makes me think about cancer as something that even I experience outside of myself, in this new world, out in the ether. Something that is so personal, so emotionally and physically damaging, is also experienced virtually. I find that interesting.

These searches make me think about the people behind them, and they bring out different emotions in me. There are those that make me feel proud, that make it seem worth writing about something terrible if it helps someone else understand what is in store, at the same time that they anger me because it should be doctors who answer these questions, not cancer survivors:

"can thin small breasted women have a lumpectomy"
"how soon do you wake up after lumpectomy"
"does being thin affect radiation for breast cancer";

There are the image searches, which inevitably lead people to my GI Jane blog (the picture of me in the Meg Ryan wig I never wore more than a handful of times is especially popular in Germany):

"chemo shave"
"bald women with cancer";

There is the one that makes me want to shake the hand of the person searching:

"what to say to someone who is having lumpectomy surgery";

There's the one that I would like to send to my oncologist as proof that I am indeed not a "spurious result:"

"paclitaxel heart palpitations the next day";

There are searches that make me want to say, in all sincerity, good for you! Until I realize that the woman writing must have been putting these words into google because the result she experienced, however welcome, was still unexpected and confusing:

"after my lumpectomy I felt great and had lots of energy";

There are even some that make me want to contact the person searching and tell her to find a new doctor:

"lumpectomy arm has IV needle";

There's the one that makes me laugh, that tells me that either the person was specifically looking for my blog and forgot the URL, or he or she is my secret soulmate and Gabe had better watch out:

"It's all over but the shoutin' cancer";

There are those that almost make my heart stop as I remember so clearly what it was like to go through these things:

"waiting for BRCA results;"
"felt like such a fake" (that is such a general sentiment that I don't understand how it led to my blog, and yet there is nothing truer than those words when I think about myself wearing a wig);

There is my all time personal favorite:

"How to look amazing in just one week!" (this search led to my "Just one week later" blog after radiation was finished, when I looked like hell with no eyebrows and chicken little hair. I like to tell myself that I can answer this question expertly at any given time, however);

And there is the one that pains me to read, because it cuts to the quick:

"young cancer survivor unable to picture old age."

All of these words have other words underneath them, other meanings. This web searching that we do coincides with all of the soul searching that cancer entails. Can someone please answer the unanswerable questions? Can I get a witness? I wonder sometimes where my searches are, what would happen if I put my most personal questions into the cloud. What if I searched for this: what do you do when your husband is crying because your daughter was asking what she will look like when she is 18 and they discussed whether she would be taller, fatter (her word), have longer or shorter hair, and she said she would have long hair, unless she got cancer and it fell out?

What, if anything, would I find?

What would happen if I did a search for this: I was so proud of this same daughter when she played the lead role of Dorothy in the Wizard of Oz play at her school today, because she remembered all of her lines and wasn't shy at all, and I was proud of myself for finding the dress and the shoes, and I wonder what she will look like, and be like, when she grows up, so I couldn't help but just cry during the show, and not out of happiness but a real, deep, penetrating fear that I will never get to know her as an adult because I will die too young, but 30 seconds later I was laughing and joking with the other parents?

What, if anything would I find?

I don't know. I have finished searching for answers about breast cancer, at least for now. I am glad, however, that this strange rambling vehicle I'm using to express my thoughts has led some others closer to those elusive truths that it would be much better to never learn. In closing, I don't say this often enough--thanks for reading.


  1. My Google spit out from your searches:

    Random: I feel that it is somehow wrong that I'm so enthralled by your writing, given its subject matter, but I am nonetheless. You are an very entertaining blogger.

    Man swiping at your hair:
    BATTERY. Defn #10. Law. an unlawful attack upon another person by beating or wounding, or by touching in an offensive manner. (The guy was an A-hole. Or potentially mentially ill. Call the cops next time?)

    Daughter with no hair: She's only 4 (though an old soul, but still only 4) so maybe she doesn't understand all of what cancer is. But at least you've tried to educate her on the causes behind all that's happened to you rather than treating her like a moron and trying to make up a bunch of cover stories. And... you have shown her that it's something you can survive. So rather than say "unless I get cancer and don't make it to 18," she says, "unless my hair falls out." What she knows people do get cancer, they can lose their hair... and still be around afterwards.

    Penetrating fear: It's a rough demon to walk around with, though I'm guessing it's not stopping you from walking in the first place. My kiddo never even knew her Uncle Bob, which you know. Did you know she talks about him ALL the time? From all that we pass on from him (of course with all the crazy edited out). Give them what you can while you can. Hopefully that'll entail the next 60 years. We have to find ways to cuddle up with our demons, aim for the best, and just keep walking.

    P.S. I think you know all of this and really weren't asking for a pep talk, so I appreciate you humoring me. Sometimes I say this stuff as much for my own benefit as yours.

    P.P.S. I don't know if you ever watched "Angel," but I'm specifically thinking of this demon named Skip played by David Denman. He's the one I walk around with.

  2. You know I love all the comments! And how could Fiona not talk about Bob? I swear she looks just like him.