Wednesday, May 4, 2011

Day 364: One Year Later

I know that from the title, you might think that I don't understand how many days there are in a year. I do, all too well. I started this blog on "Day one," or one day after I learned that I had breast cancer, on May 5, 2010. On May 4, 2010, I received the news that changed my life.

This idea of a cancerversary is interesting, as there are so many dates that one might use to mark a year. I could think about yesterday being one year after my biopsy, after I received the piece of paper telling me that the results of the mammogram indicated a possibility of breast cancer. I could think about June 4, one year after surgery, when the cancer was removed (that is the date that the doctors use, I believe, to say you have survived for one year). I could mark the end of chemo, October 18, or the end of radiation, December 10.

I could, but every cancer survivor I've ever met counts from the day they received the diagnosis. And what a day that was.

I went to work, in pain from the biopsy, and concentrated on the logistical issues that came up in regards to my major conference that was to take place a few weeks later. I got a call from my ob/gyn who had given me the referral for the ultrasound a week earlier (99% sure it's nothing, go get it checked out and call me back with the good news, he had said) and if I hadn't been in such denial I could have reached out and touched the pain in his voice. Have you heard from the radiologist? No, nothing yet. Oh ok, well let me know when you talk to her.

I learned later that he already knew, that she had called him to say that she was very concerned with what she saw and that she thought I had cancer. I think he was crying when he called me, but I just couldn't let myself hear that.

I went home and hung out in the yard with Gabe and the kids and our next door neighbors. I watched my cellphone, waiting for it to ring, and I brought the cordless phone from the house out too. A call came in on the landline and Gabe answered it. The doctor asked to talk to me. I took the call and again, if I hadn't been wishing with all my heart against it, I would have known from her voice the second she said hello.

Before I made it to the house she said "I have to tell you that we did find abnormal cells in your biopsy." Pause. OK, I said. "Specifically, we found cancer cells." I felt like I would vomit but I just stood there numbly and said OK. "Are you in a place where you can talk and where your husband can get on the phone with you? It would be helpful if he could take notes while we talk." I was silently crying. I walked back into the yard, looked at Gabe and nodded. I saw my neighbor put her hand to her face and gasp. I guess Gabe must have handed Augie to someone, but honestly I wasn't paying any attention.

That phone call was one of the most surreal and nightmarish experiences of my entire life. Gabe took notes on a netflix slip. I learned that I was triple negative, though that meant nothing to me at the time. She told me I would need to do chemo, that it was early stage, perhaps even stage one but most likely stage two, and that I was a good candidate for a lumpectomy and radiation. She told me I had either two or three tumors. I was referred to a few surgeons. She knew I was still nursing so she said that I couldn't have an MRI but that I would need other tests, and that due to my age and triple negative status I should get checked for the BRCA gene. She told me I would likely need to wean as soon as possible. I asked about my chances for survival and she told me they were good, that many women in my situation did very well. All I could hear in that was what was behind it, the fact that some women did not do well at all. I had to acknowledge that if I was asking about my chances to live or die, that that was exactly what I was facing: a life or death situation. It didn't seem possible. This doctor had a very naturally cracking voice, but I could hear the emotion there too, even though I couldn't, if you understand what I'm saying. I couldn't let myself hear that.

I remember looking outside and thinking how beautiful the day had turned out to be, how sunny and warm. I felt so healthy, so fit, so alive. I know that I responded to the information I was given, and I know Gabe tried to sound very businesslike as he asked questions and took notes. I know he thought I was going to die and that he would be left to raise the kids himself. I know that, even if he didn't say it. I don't remember if I cried during the call itself, but I remember how hard it was to breathe. The rest of the day was a blur. I think I took a walk, but other than that, I'm not sure what happened. Where were our kids? Did they eat dinner with us? What did the neighbors tell them? I have no idea. I'm not ashamed to say that for a few hours I had to pretend that I didn't have kids at all, that I wasn't a mother, because thinking about them was too painful for me to bear.

I didn't want to talk to anyone after I hung up the phone. I made Gabe call my mom. He agreed, though I know he had no idea what to say. He went upstairs so I wouldn't hear the conversation, but he called from Augie's room and didn't realize the monitor was on. I heard the whole thing, him crying, saying, Kate has cancer. Of course, I couldn't hear what my mom was saying, though I could imagine. Later that night I called my ex-boyfriend. I still don't know why I could do that but I couldn't pick up the phone when my brother called. It doesn't matter, I guess.

I decided that night to write this blog, when I realized how impossible it would be for me to tell anyone in person, or on the phone, about my cancer. I just couldn't handle it. I had no idea who, if anyone, would want to read it. I didn't care. I wanted to update my family and any friends who might be interested, and I wanted to give those closest to me an out. What does that mean? Well, when people would ask Gabe tough questions, ask him about things he was too emotional to discuss, he could just say "read the blog." I also wanted something else, deep down. In those initial days of terror, I wanted some way to document something of myself, to leave something for my kids to remember me by, as they were too young to remember me much, if at all, if I didn't make it.

The blog has been more than that for me. It's been cathartic, and has helped me work through more emotions than I could have handled in any other way. It's enabled me to write about the injustice of cancer treatment, to document all the unfair and torturous and bizarre things that happened. The blog has been my photo album of cancer, allowing me to see what I used to look like (is that woman with long red hair really me? She must be someone else), what chemo did to me, what it looks like to be healthy after cancer treatment. It actively hurts me to look at some of the pictures we took of me, especially in the late fall when my eyebrows were gone, I was still bald but had the horrible peach fuzz coming in, and my body was burned from radiation.

What the hell kind of shit was that?

I've tried to read this from start to finish, and I've never made it all the way through. First of all, it's very long, probably 350 pages or so at this point. Second, something always stops me. I get to the middle of my A/C treatment and I just can't get past it. I am shocked that I worked while doing chemo when I look back and read the documentation of everything that was happening to me at the time.

You might ask what was the worst part, and you might ask what I have learned. The absolute worst part of this year has been the fear. The fear that I started with, the fear that remained. It has dissipated but not disappeared. It was with me last night when I had a strange, tingling pain in the back of my head. It's with me all the time, with every decision I make about what to do with my life. I don't focus on it, but it's there, in the background, reminding me.

I haven't written about this at all, because I was afraid of jinxing it, but we are in the process of trying to buy a new house. The whole deal might fall through for a variety of reasons. It has been very stressful, though once I received the news of my clear mammogram last week, I felt such a huge weight lifted from my shoulders that in some sense I stopped caring about the house or about anything else. The enormity of that relief was fleeting, however, and life continued, and some of the stress returned. But here's the point I want to make:

I think we want to buy this house because of cancer.

For me, it's because it gives me something to look forward to in part--it's a project, and it could even signal a fresh, post-cancer start. But more than that, I have wanted to do it because I feel that given our occupations and the fact that we are never going to make it big, buying this house might be the best investment we could make that could put Gabe and the kids in a better situation if I were to die. I think Gabe wants the house because you can see the sunset and sunrise from the top floor, which is very rare in Chicago, and he sentimentally wants to watch those with me for as long as I'm alive.

We will be fine in our wonderful cozy current house if this doesn't happen, but the point is, I don't think those are the regular reasons that most couples have for buying a house.

We are fresh out of regular reasons over here. I can honestly say that 2010 was the worst year of my life. It's a terrible thing to say, given that I had a healthy baby who was learning 75% of all the things he would ever know in his life (how to walk, how to talk, how to feed himself, give a hug, and eventually use an ipod) and that I had a little girl who needed me to be happy as she lived out her fourth fragile year. But it's the truth.

I know I should celebrate and say, I made it one year! I know there are a lot of people with cancer who can't say that. I should look at this self, this body, and wonder at how completely I have come back. What makes this anniversary so poignant is that I can remember what it was like a year and two weeks ago, when I was just living my life and death was nowhere lurking. I can remember how it felt to have my youth taken from me, my idea of myself as a healthy young mother. I lost so many things in one year, as did my family. I have detailed all of those things here--from the physical, such as my hair, or Augie's ability to nurse, or the friendships that didn't survive cancer, to all of the intangible emotional losses. I won't even try to explain how it feels to come out on the other side, because while it is beyond wonderful, it is not worth knowing if you don't have to know.

And so I have learned something. A year is not enough. It goes by so quickly, no matter how much you suffer, how much changes, how much things get better. Time is so fleeting, and that's both a blessing and a curse. If you have one year, you want ten, especially if you have small children and you realize how much they change in such a short period of time. They say that as parents, we lament how the days are long and the years are short. That has nothing to do with parenthood--that's just the truth of life. Thirty five is way too young to have cancer, to be so close to death's door. And yet it's hard for me to believe that I'm thirty five, when I was five just yesterday, when everything that has ever happened to me, no matter how big or small, might as well have just happened.

One year ago, I found out that I had breast cancer. I should say that I will never look back, because that is what I am supposed to say. But of course I will look back. That is the only way any of us can look, back into our lives, to remember. The rest, the looking ahead, we are just imagining. It is worth imagining and dreaming, it is worth it to look forward to what hasn't happened yet. It is also worth it to remember what was real, no matter what it was. I would have liked to trade this year for just about any other, but I wasn't given that option, as no one ever is. So I will look back on this year and shake my head, but I will look with some fondness as well, because it's my life. For better or worse, before cancer, during and after, it's my life.

1 comment:

  1. Reading this nicely combined uplifting and heartbreaking blog entry, I started to think that I'm so grateful for the insights into your brain that I've gotten over the past year, and the opportunities to bounce back at you. It has been like hanging out with my old friend again. And then, of course, I felt awful because the Big Katy Brain Insights all came through your cancer blogs, and the emails, and phone calls, and visit, all in support of you during cancer treatment. But you said it well: while it is beyond wonderful, it is not worth knowing if you don't have to know.

    I can't even imagine the friendships that didn't survive the cancer, and I'm so sorry that you had to experience that on top of everything else. I know you believe that we're here, and that's it; so I'm glad that we're here together, sickness or health. Me, I believe that I've been your friend for eons, and will be long after we're both gone from this ride. Me does not exist without you, no matter what the context, form, proximity, or amount of hair. I'm sorry for the folks that skipped out on you, but there are a lot of us that you are definitely stuck with. :)

    Lastly, don't feel guilty or anything - I consider the first year of my kiddo's life one of my worst as well, and I wasn't even dealing with half the stuff you were. So. Here's hoping this year will be one of the best. Happy Day #1 of this year, my old friend.