Saturday, May 15, 2010

Day 11

I think I spoke too soon in the last blog. Grief can come over you in waves, no matter the loss you're contemplating. And I'm still grieving what I know will be the loss of part of my body, my hair, my youth, my health, my old life where I worried about normal things. I wish I could hit the rewind button and relive the last five or so years differently, so I could enjoy everything more and worry less. But I can't, and that bothers me.

By all accounts, we had a wonderful day yesterday. Gabe went in to work for a while and then worked from home, so we took the kids to Brookfield zoo in the afternoon. It was gorgeous--maybe the nicest weather of any zoo visit I've ever had in my life. We got dinner after the zoo and it was bedtime for the kids when we got home. Gabe and I watched the Hangover. The day was just so normal. And that's what got me.

Will I ever be normal again? Here's a problem with the internet. You can google "is life ever the same after cancer?" and get hits like "" Seriously, look it up. It's as if there's no emotion or life experience that hasn't been done before, that others haven't tried to explain. Because that's true. But that doesn't make it feel any different for YOU. All day long I would be enjoying myself, when I would suddenly start reeling from something, like seeing a young couple with a baby. I didn't even want more kids but I would think, that will never be me again, and need to turn away crying. I got sad while clipping coupons because I realized I didn't need the Pantene coupons anymore. I think I'm getting the same cold that Augie and Gabe have had, but every innocuous symptom is turning me into a basketcase as I wonder if I have lung cancer, stomach cancer, bone cancer, shit, full body cancer. I started throwing all of my nursing clothes and bras into a box, angry with myself that I ever saved any maternity clothes. This blog is filled with TMI, so I'll admit that I got my period yesterday, which while normally annoying, just made me think "well what the hell is the point in that?" And in grand irony, my breasts are just killing me, as I am very engorged from weaning. I'm mad that neither I nor Gabe can enjoy them in the last few weeks I have them, you know? A few times yesterday, I started resenting the normal day, because damnit, this isn't normal, I might never be normal, isn't that obvious.

I know I need to take it one day at a time. That's all anyone can do. And for the most part, I have been doing that, but these thoughts keep creeping up on me. I haven't even had surgery, much less treatment, but I'm already thinking about what life will be like after that. I might still be very tired, not my normal self for a long time. Many cancer patients say recovery is much worse than treatment, because they weren't expecting it to be so rough and they thought they could go back to their pre-cancer lives. Now I can hope for me it will be relatively easy, but I can imagine how you finish chemo and radiation and everyone believes, now the old Katy will be back. Hopefully, but what if not? It would be a drag to be around someone so singularly focused, which I have been these last few weeks. Will people begin to wonder when I'll get over it? When will I be the same? It's this unknown that is my second biggest fear, after the initial fear of my cancer having spread.

As an aside, I am just totally unprepared to find that out. I try not to think about it and to assume the best. That's why I've scheduled my lumpectomy, my post-op appointment and my first appointment with the oncologist. Let's just assume everything's good, I'm not BRCA positive and we're doing this lumpectomy. Let's assume I caught it early and I'm stage 2 or less. But every once in a while this fear crashes over me and I feel like I'm drowning in it. I'm not supposed to admit that, am I? That makes me weak, or negative, or at the least a downer.

Back to that subject--I know I shouldn't look at it that way, that I'm bringing people down. I'm just afraid that we're getting all of this support because people feel sorry for me, and it's hard to maintain relationships based on pity. I've been thinking back to the time after I got hit by a car when I was 9. I was out of school for three months, in a wheelchair, and I had to learn how to walk again. Recovery was the main purpose of my life then as well, but I was young, so distracting myself was easier. But I remember how my friends would visit on rare occasions, and how hard it was for them. I felt guilty about that, and also lonely. It was totally understandable--we were kids. If I couldn't play, what would I do with my friends? We weren't "tweens" then the way kids are today. We didn't sit around talking, about boys, or clothes, or whatever. We played. I couldn't do that, so they did the logical thing and waited until I could. I know my friends cared about me, worried about me, missed me. But for that time, I was different, so my friendships were different too. All of my friendships survived that accident, and some of my friends from that time are even following this blog 25 years later. But once I could play again, I seemed the same. This time, I'm not so sure.

When I got in that accident, I was on my way home from school, excited to meet my friend who went to Catholic school (we didn't see each other that often) so we could have a big leaf fight. I think she was mad when she found out that couldn't happen; of course, she didn't understand. For a few weeks after I got out of the hospital I would enviously watch other kids jumping in the leaves. I wistfully admitted to my mom that I wished I could do that. She said "oh, you'll be able to do that next year." And she probably doesn't remember that conversation, but that was one of the biggest epiphanies of my life. Next year. Next year, things will be different!

At 9, you have no concept of the future. I just accepted that yesterday I could walk, today I cannot. I am not a walking person anymore. The idea that the future would be different, that life would not always be as it is today, was a marvel. I felt so overwhelmed by happiness that I can still remember what it felt like all these years later. I went through some tough times after that, had night terrors, etc., but the next year I met up with my same Catholic school friend and there are these wonderful polaroids of us having the best leaf fight of all time. And I still kick the leaves in the fall.

This time I worry that the future will be different, but not in that good way. It's harder to have an epiphany like that when you're a more cynical adult. And most of my friendships are based on talking, laughing, etc. and for now I am not very good at talking about anything besides myself and this disease. I try, but then I get lost in my thoughts. Gabe suggested I write this blog today, so I can get out some of the negative stuff. He thinks my blogs have been more positive than I'm really feeling. That might be true. But since I've been avoiding people, all anyone knows about me right now comes from this blog, so I don't want it to be completely depressing. I'm usually a pretty even-tempered person. I get annoyed easily, but I don't take myself that seriously. And this is some serious shit.

So what to do? I think I need to get back into the world, start answering the phone. I can't make any promises, but if you all start calling, you might actually hear my voice. Don't take it personally if I'm not up for talking right that minute. As they say, it's not you, it's me. And it is still me, right? Somewhere in there.


  1. I have been there from the beginning and can say without doubt that you have been and will always be you, no matter what happened, no matter what will. I can't begrudge you the question, since it's you that has to do this, but I think this blog answers it. You are your usual talented, inspiring, insightful self and this "fever" will not change that. And I call it a fever because when you were little that was the only time you allowed us to hold you - when you had a fever and were slowed down a bit. Otherwise, you were off and running. So I look at this as a rare chance to hold you for a bit before those brown eyes see the next thing to do. and you're off and running again.
    I love you,

  2. dear katy,
    i've read every one of your blog entries and plan to continue to. i'm so glad you have this outlet, for what it's worth, in writing. your voice is so strong, no matter how you might be feeling in the moment, and i hope you will banish all worries of being "too negative" or what have you, because i, for one, am not supporting you from a distance out of pity, but out of admiration, love, and respect for the bright woman i remember from college and the vulnerable, strong, sharp, ironic, raw, weak, and powerful woman i am reading here now. keep it coming, in all of it's paradoxes, low moments, and high moments. and of course, the grief 'stage' has not passed. of course, it will all come around again in cycles. keep it real, as you have been. your friend and admirer, anne

  3. The tidal waves of fear that you're having do not mean you are weak, or negative, or even a downer. This fear means you human.

    And regarding your fear of never being the same again - your mom responds very eloquently above. For me, I turn to movie quotes. It's like Alan Rickman says in Dogma: "Knowing who you are now doesn't mean you aren't who you were... No one [and no things, including mutated cells] can take that away from you... All this means is a redefinition of that identity - the incorporation of this new data into who you are... Be who you've always been. Just be this as well..."

    Also, if you are worried about receiving support based on pity, sorry, Babe, but you said it yourself - lot's of people have had cancer, so that's not the reason for so much support. Hell, you won me over more than a two decades ago, long before your breast cells went wonky. My affection for you is based on many things, several of which are hilarious but out of respect for all involve I will not put on the internet, but not pity.

    As an aside, though, if there are those out there who are providing you with support based on pity, I say milk it for all it's worth, baby! Get all the support you can while you can! Afterwards you're still going to be stuck with the rest of us.

  4. You know, it's funny...I'm actually learning some stuff I didn't know by reading this blog--not always about the NOW, necessarily, since I'm obviously in touch with Mom at any time I'm not directly in touch with you and Gabe and the kids, though I of course do learn some things in "real time" here--but about the past.

    I remember the wheelchair and the night terrors and of course the day of the car accident (that has stayed entirely vivid for 25 years). But I had no memory of the fact that you were expecting to see Meg that afternoon...and yet I must certainly have known that then. I had no memory of your missing school having extended for 3 months; I remember individual incidents (trick-or-treating with the wheelchair), but of course had a really different understanding of the passage of time as a kid and don't remember those months as a whole stretch.

    And obviously I never could have known about your own time-passage epiphany, unless you had told me, which doesn't seem like something a 9-year-old would suddenly decide to say to a 12-year-old (I wonder if most childhood revelations are almost by definition private ones). It's rather an unimportant effect of the blog, comparatively speaking, this calling back of things perhaps once known or revealing of things never known. But something about the way various moments and relationships in your life are all intersecting through your posts and the responses to them is really impressive.

    I'm sort of getting to see you in the context of your friends and memories and forecasts into the future, whereas I normally see you in the context of my visits to Chicago, which are about family per se by definition. I cry from time to time as I read, but mostly I just smile. There's something great about having this virtual space, as awful as it is that it will (as you note) be a hundreds-of-days-long phenomenon rather than, say, a few-weeks-long one.

    It's easier for me--for anyone on the outside--to jump a year into the future, certainly. Most of the time, that's what I do: I think about being able to look back on all of this with you in the summer of 2011. The blog helps to keep a balance between the experienced present and the projected/predicted future, while also bringing back (or introducing) bits of the past.

    That's a neat temporal trick.

    I hope the whole thing is a helpful to you as it is to all of us.