Shifting perceptions

Upon reading my short essay on paralysis (see below), my roommate Gina was clever enough to remind me that this time last year I was reeling after Comps, and completely unable to get anything done. Part of this paralysis is the lack of external deadlines.

Given my state of mind, and the lack of external deadlines, I’ve decided to embrace summer for once. This maybe hasn’t involved all the partying and beach-going that one might think “embracing summer in Hawai`i” might involve, but for me, the workaholic grad student, it’s been pretty awesome. There have been long bike rides, and roller derby, and Doctor Who, and beer, and tomorrow there will be beach and barbecue.

The news as of now is that I’m definitely going into surgery. This week I’ll be meeting with my boss about medical leave, and I’ll be calling my oncologist. We will “tentatively” schedule surgery. It’s tentative because we will set a date, but we won’t know which surgery I’ll be getting.

We won’t know which surgery I’ll be getting. Sometimes I say that and I’m calm. Sometimes I say that and it’s ridiculously funny. Sometimes I say that and it scares me shitless. How can I be three weeks from surgery and not know which surgery it is? How can this be reality?

The other calm/funny/scary thing is how my perception of life has shifted. I hadn’t even realized it happening. Didn’t even notice it once it was done. But it changed; somewhere along the line my hierarchy of values and ideas of order shifted to something bizarre. I only realized it the other day while talking (commiserating) with my friend Katie. She said ‘One day you’re annoyed they got your coffee order wrong and the next day a doctor is telling you your life will never ever be the same.’ It was during that conversation, sometime around that sentence that it occurred to me how strange it is that I’m really, really hoping for surgery to remove a tumor and possibly one ovary. That’s the good outcome. This did not use to be my definition of ‘good outcome.’ Life has changed.

Even recognizing the strangeness of that being the good outcome, I’m still really, really hoping for it. It still fills me with a sense of almost giddy relief that maybe, just maybe, it’ll turn out that that’s it. That’s all. Nothing more. Just that one, little, insignificant, finite, tiny little thing. Remove a tumor. No biggie. I was even starting to think on that outcome as almost kind of embarrassing, like I’d have to apologize to my family and friends for worrying them so much for such a stupid little thing. “Sorry everyone! False alarm! Only need to have a tumor removed. Just… forget everything we were worrying about. It’s all okay.”

Realizing that my definition of ‘good outcome’ changed means that I realized that the good outcome is still a legitimate cause for worry. But I can’t bring myself to worry about it. I only feel a giddy hope that maybe that’s all. God, it would be like heaven.

The bad outcome is the other possible surgery. Shoots, what is it called? I’m only just now learning this word—oophorectomy. Both ovaries removed. Plus hysterectomy. Uterus too. That’s a pretty serious damn surgery. And it would be followed over time by prophylactic mastectomy. Which in turn would be followed by reconstructive surgeries. Saying for the sake of optimism that I get through these surgeries before getting cancer, these surgeries would reduce a super-high risk of cancer to near zero.

I was beginning to wonder if I was making the right decision by considering all these surgeries to avoid cancer. Should I keep my body whole and hope for the best, not cut unless/until I get cancer?

But jeez, first of all, I really don’t want cancer. So think of the options—definite surgery alone versus possible cancer plus surgery together? One of these is way worse than the other.

Second, I was talking to another friend about her experience with breast cancer and she told me, “We do what we have to do to stay alive.” She said with every decision she made, every step she took, everything always was based on the criteria What Will Keep Me Alive. She said splayed out during radiation treatment she thought to herself, ‘This is the most life-affirming experience I’ve ever had,’ because radiation is scary as hell but she walked in strong because that’s what it takes. She chose life, everything else was just follow-through.

I may change my mind. I can’t speak for future versions of myself who will have had different experiences and will be better informed. But right now I can tell you that though it seems ridiculous to schedule surgery not knowing what it will be, and though it’s scary as hell to contemplate a year of surgeries in my future, I’m walking into this at least sometimes calm. Because this is my life now, these are my choices. I have no say over whether I get the good or the bad outcome. And maybe it’ll turn out to be the nothing-false-alarm-tumor-removing good outcome. But come what may, I’ll do what it takes. I choose life.

Re: Paralysis

I feel paralyzed.

That’s what this is like: mental paralysis, life paralysis. I can’t do anything. I can’t plan anything. I can’t make decisions. I am paralyzed.

But this is only a metaphor. I feel pretty confident that actual paralysis would be worse.

Still. This sucks.

Today is Friday, the 20^th of May, 2011. Some people are apparently of the belief that they’ll be raptured tomorrow. They’ve maxed out their credit cards; they’ve made no plans for Sunday tea. This seems relevant to me.

I’m a graduate student. I’m a daughter, sister, wife, birthmother, friend. I’m a genius, a type-A personality, a control freak, a tenacious go-getter. I’m the one with all the plans. I’m the one who follows up my plans with action steps and persistence and good fortune and hard work. I do things. It’s who I am.

Except now I can’t bring myself to do anything.

It’s taken me ten days to make a paragraph’s worth of edits to a 6-page document. What the hell is wrong with me? Two months ago I’d have knocked that out in half an hour. But now I have this metaphor, this paralysis.

I’m stuck. Waiting.

x

In my normal life, I’m a graduate student who studies social and environmental justice issues related to climate change. Specifically, with my dissertation research, I study the impacts of climate change on the culture of the indigenous population in Tuvalu. It’s a small country in the South Pacific, one of the friendliest and most beautiful places on Earth, and if we don’t stop the sea level from rising over the next century, it’s not going to exist any longer. At least, it won’t be habitable.

A lot of research literature and news media makes it sound as though Tuvalu is a lost cause. Same with the Maldives. Same with a handful of other low-lying countries. This is not true. We can still save these countries. We can still save our species.

I was fortunate enough to get a job in my field while I finish up my degree. I’m a project assistant with an organization that seeks to bridge the gap between scientific research about climate change and regional planning. How do we make these huge reports and models relevant to the people who make daily decisions in a region, state, city, neighborhood? What is useful to them and how can we make sure they have it? That’s my job. I love my job.

I love my school too. I love my research. I love Tuvalu. I love my family. I love my friends. I love my life. I’ve got a great life.

x

I’m not dying.

I decided that already. No matter what comes, no matter what all the tests say, I’m not going to die. Not from this. And for that matter, the planes I’m in won’t crash and the boats I’m in won’t sink.

Car crash, maybe. That seems like a pretty commonish thing.

But not from this.

It’s May 20^th, and I found out fifteen days ago that I have a solid mass on my left ovary. The good news is that the cancer blood test came back ‘normal.’ The bad news is that that apparently only means ‘probably’ not cancer. Still could be. But it could also be a blood clot that’ll clear and no harm done.

I’d feel a lot better if it were only that.

But also, I have a 50% chance of having a genetic mutation that has killed a lot of women in my family through breast and ovarian cancer. I should find out by June 3^rd. If I have it, a lot of things will change. A lot of my plans will be rewritten.

It’s May 20^th. Fourteen more days to go.

x

In the ‘everything goes well’ scenario, one of two things might happen:

1) I’ll go to Chicago next month. I’ll finish most of my classes this summer. I’ll begin my field research this summer. I’ll finish my classes this fall. I’ll go back to Tuvalu in December, then again next spring break. I’ll have all my data together, write it all up, graduate May 2012. Not bad at all.

2) I’ll go to Chicago next month. I’ll conduct workshops with my job this summer. I’ll begin my field research this summer. I’ll finish my classes in the Fall and Spring semesters. I’ll go back to Tuvalu in December, then again during spring break. With all my data together, I’ll write up my dissertation in the Summer and Fall of next year and graduate December 2012. Also not bad at all.

These are two very good options. I like both of them quite a lot.

x

Because I’m paralyzed, I haven’t told everyone that I’m going to Chicago next month. People I’ve been dying to see again for years—the teens I worked with who are now all grown, my coworkers at the food pantry, all sorts of people whom I’ve missed desperately for four years—I can’t tell them that I’m coming back to Chicago. That I’ll see them soon.

I’ve bought my tickets.

I’ve arranged housing.

I’ve paid the conference fees.

But I’m too scared to tell them I’m coming. Because what if the next test comes back and it’s not in the ‘normal’ range? What if I don’t make it to Chicago? Then I’ll have to tell them I can’t make it after all. And also I have cancer. Or, and also I’ll be in surgery.

I’m really bad at telling people bad news about myself. I’m really bad at telling people when I’m scared.

x

I have a lot of supports. My friends and family have been very good, listening to me, checking up on me to see how I’m doing, what the latest word is, telling me they’re praying for/thinking of me.

Michael’s been great. He’s been close. Affectionate. Supportive. He’s really great.

x

In the ‘everything goes tits-up’ scenario, any number of things might happen. Here are two examples:

1) I have the gene and so I have to have my ovaries removed because having already developed a tumor is never a good sign in the likeliness-to-develop-cancer spectrum. And because I’ll go into menopause I’ll have to take hormones, which increases my risk for breast and uterine cancer. So I may have a hysterectomy too. And with the gene my risk for breast cancer is already so high that a few more percents is really basically all the percents I’ve got left, so I’ll go ahead and have a prophylactic mastectomy. And then reconstructive surgeries. I’ll need to take time off of school to get through all this. Hopefully I’ll still be able to continue working in between all the surgeries. Graduation will be in Spring 20?? because the important thing will be to focus on my health.

2) I have the gene and so I get a mammogram to make sure before I have my ovaries removed and that doesn’t go so well. Turns out I need to have my breasts out immediately. Same surgeries as before, but different order. Also there could be chemo. It’ll make me throw up a lot.

I don’t really like any of the options down that road. All of them hurt. All of them involve surgery. Some of them may involve cancer. Then I’d get to have chemo and surgery.

x

The paralysis isn’t just from the uncertainty. There is that, of course. The ‘what if I make plans to do this but then I can’t’ bit. But I’m a planner. I have a million contingencies always set up and waiting. So it’s not just that.

Part of it is anxiety. I’ve found over the past few weeks that anxiety, in some ways, works like depression. Some days I just can’t bring myself to do anything. I’m so tired, bone tired, weary traveler, worn soul. Some days it feels like I would watch TV and drink beer all day long if there weren’t some part of me reminding myself, ‘you know, you’re not really that type of person.’ And I have to remind myself of that because some days I really feel like that type of person. But other days I’m fine—go to work, super productive, mostly cheerful even with all that background anxiety nipping at me.

Part of it is that fine line between optimism and realism, statistical chances and hope. If I plan only around the good scenarios am I just fooling myself? Will I fall that much harder because I wasn’t ready? If I plan only around the bad scenarios am I just harming myself? Am I drowning myself in 50% unfounded anxieties? 'What I should do now' and 'what comes later' starts to get murky.

Part of it is just distraction. I can’t keep focused enough to figure out what to do next, much less to go ahead and do it.

It bleeds into other things, other things that don’t involve planning out the next year, other things that don’t matter at all.

Clean the bathroom. Read this email. Respond to this email. Make dinner. Practice guitar or violin. Practice Tuvaluan. Go on a walk. Go on a bike ride. Paralyzed and I can’t do any of it. Respond to an email? Insurmountable.

I want to finish this chapter in the novel I’m writing. I could do it in two hours. I just need to sit down and do it. Six days I’ve been telling myself that. I have the time now that the semester is over. Just sit down and do it.

Instead I watch TV. It’s easier and it takes my mind away from all of this.

x

I remind myself to do things that make me happy. I go out with friends and I go on bike rides.

It doesn’t always work. Sometimes I’m anxious the whole time anyway. Sometimes I can’t bring myself to go.

But my friends listen. They call and ask how I am, if there’s any news.

x

It’s funny, because I’m actually more worried about losing my breasts than my ovaries. Even with this unsettling idea of going into menopause at age 32. Even still. I have a direct, personal, lifelong relationship with my breasts. I like them. They’ve been good to me.

My ovaries and I have a more turbulent past. I mean, puberty? What the hell was that all about? But afterwards I got to be a woman, and that’s really cool. I really like being a woman. Can’t much imagine the alternative. Then there were those pregnancy scares. Not so great, except that one of them made Ian and there is nothing more amazing in this world than that kid. God, him and his parents who adopted him, they’re just wonderful beyond wonderful.

But if I only had to remove one and I’d not get cancer, I’d choose my ovaries, hands down. The problem is that the chance for breast cancer is waaaaay higher. In fact, if it weren’t for these problems I’m already having with my ovaries, I probably wouldn’t consider having them removed just yet. Wait a few more years, to a slightly more menopause-appropriate age.

I wouldn’t ever consider having my breasts removed if the chance for cancer wasn’t so high.

x

I have a 50% chance of having this gene. I have a 50% chance that at most I’ll just have to have this tumor removed and nothing else. I have a 50% chance of having the same chances for cancer as every other woman on this planet. I have a 50% chance that everything will be pretty much okay.

x

I wish I wasn’t so paralyzed. I wish I could just keep doing my normal life.

xxx