Monday, September 22, 2014

Day 1,471: Cancer Doldrums

At some point, somewhere down the line there, cancer got boring.

Yeah, I said that.

I have the luxury of saying it. I can be bored of cancer, because it is not actively trying to kill me, at least not that I know of, not now. But I felt the boredom in the middle of treatment. The appointments, the treatments, the tests and screenings and medication, the physical therapy, reading through the bills and dealing with insurance and talking to your boss and trying to act like this is just a normal part of life, it all seems so...tedious.

When you have an early stage cancer for which the three year mark is a supposedly magic number, and then it comes back after three healthy, fit and active years anyway, in addition to all the other feelings, you might find yourself just being kind of PISSED that right after you graduated to yearly visits you had to go right back to basics.

I remember feeling anxious for quite a while before each visit with my oncologist. I know many women who still feel this way today. I just went to my 3-4 month checkup (I went after 4, but almost stretched it to 5 until I got in trouble and they rescheduled me) last week. I was vaguely nervous the day before, but I told Gabe not to come with me and I just hung out there and didn't feel much of anything. I knew my onc wouldn't do any tests--no blood draws, no scans. He would have someone check my vitals, he would give me a physical, feel my breasts--the real and the fake--check me for lymphedema. I was there maybe 10 minutes; he told me we wouldn't go "chasing problems," and I know what he means--that we won't check for signs of mets because checking for signs of mets doesn't prevent mets and once it's there it's incurable. We don't have to say these things to each other anymore. I find myself annoyed at having to go to the doctor, and yet relieved when it's over. One thing I don't feel anymore is the kind of relief I used to feel, that most women feel, upon being told everything is fine. I don't cling to that notion anymore. Sometimes having cancer means figuratively holding your breath in between appointments, especially when you have something like TNBC for which there are no targeted therapies and so therefore no advice other than "try to be healthy" and "everything in moderation." I understand that people feel they have been given a little bit of their life back when they go to the checkup and get the all-clear.

I don't feel that way anymore. I mean, the all clear doesn't really mean anything. Just like the tests don't really mean anything. I was clearly healthy with no other symptoms but lumps that came out of nowhere both times I was diagnosed. Now, that doesn't mean that I am worried all the time--quite the opposite, in fact. The knowledge that it's kind of a crapshoot enables me not to feel anxious OR relieved. I've had this cough that won't quit, but that was after my strep throat, and my ER visit brought on by an allergic reaction to the antibiotic, and I worried about it for a few minutes, and brought it up to him, but I couldn't take that seriously. I told him: "I've had this crazy hacking cough. But you know, it's gotten better. I know it's better because I can talk to you. I couldn't talk last week. And it's been annoying. Because I don't get sick. I just get cancer."

And he said "You got cancer. Let's use the past tense."

The man has grown on me.

I mean, it's a joke by now, but I knew he would say it, and he didn't disappoint. He told me: "You look good."

I smiled, got dressed, dutifully made my appointment for January, walked the two miles to work. I posted a message letting everyone know I got the OK. I was relieved to learn I didn't need to visit a surgeon anymore. My last surgeon moved, and the first one hasn't seen me in a year and a half now, and honestly I am bored and tired of seeing multiple doctors all the time.

I'm tired of it, and that's why I haven't written much lately. Sometimes I am absolutely astounded when I think about the fact that I have had cancer, much less that I have had it twice. It doesn't seem possible, and yet I can hardly remember not being this person. I feel like my marriage to cancer has wilted on the vine and maybe it's time to take a lover or something.

Except, then, something called me back to reality.

Something reminded me of the initial fear and desperation and disbelief that accompanies cancer in its early stages.

Gabe, the guy who has never really had anything physically challenging befall him in his life, who is blessed with that metabolism and physique that guys half his age envy--Gabe suddenly had some really, really scary medical stuff going on. The main symptom was disturbing, then got more disturbing, and I had to tell him: If they are not listening to you, if no specialist can see you for weeks, you tell them that is unacceptable. You tell them how it is. He got an appointment with a physician's assistant. I went with him. She didn't even examine him--she went straight for the doctor who was too busy to see patients for weeks as soon as we told her what was going on, and he came in, perplexed. All of a sudden there were multiple tests ordered and scheduled--for that day, including a CT scan. I stayed with Gabe through the worst test and he told me to go back to work for the CT scan. We bonded later over how weird it feels for your body to go hot after they put the radioactive dye in your veins. He was pissed that they blew out one of his enormous veins with a failed IV. I opened the mail and rolled my eyes when I saw the bill for $8,000 for the three hours of tests. We waited. We told ourselves it wasn't cancer. We used stupid logic like cancer couldn't happen to both of us. We went online and looked up other possibilities. We tried not to worry about it. He worried about what it could be if it was NOT cancer and he went to the worst places in his mind. He tried to make me feel better, which is what sick people do with healthy people, and I should know, because I have done it all my life. I got moody and testy and then felt terrible about it because I was never like that with my own cancer, but I felt so helpless about his situation.

We waited.

And then we learned that he is fine. Though several doctors told him they have no idea what the hell was going on, which is not exactly comforting, except that it is, because saying we don't know what is going on but you don't have cancer is just about the best phrase ever heard in this family.

His symptoms left almost as suddenly as they came.

He is already bored at the thought of follow up appointments. He's not sure he'll go back. He told me that although he went with me, although he was there, he has no idea how I've done all the tests and scans and appointments and everything all these years, that it would make him crazy, that it took up too much of his time and that was just over a time period of one week. I said, I know. I did that, with a new job, and babies, and all of it. I did that after being pregnant and nursing twice and all the medical stuff that goes along with that. But I've done that all my life, since six years old with epilepsy, and I don't know any different. But you? You're the healthy one. I can't have you doing this too.

I just don't know how to be the one waiting and unable to do anything. And I guess that is the curse and the blessing with cancer. On the one hand, it's my life, and my mortality, and my disfigurement and the end of certain things I wanted with my own life like having more children.

On the other hand, at least it's happening to me, and not to my people.

Somehow, that's easier to take.

Monday, September 8, 2014

Day 1,457: Kindergarten Blues

Last week, my kids had their first day of school. My daughter started third grade, and my son started kindergarten. I expected to feel the urge to write something about that, as seeing my son off to kindergarten was one of the milestones that seemed more like a far-off dream in 2010. The second cancer diagnosis just made it more so, and it's hard to explain to anyone who hasn't been there (and luckily, it's rare to find someone who's been there) how it feels and what you think when you find out you have cancer with a baby and a preschooler at home. So many things changed in an instant--the possibility of us having more kids, the chance to keep nursing, and most of all, the assumption that the future was something we would all experience together. I remember thinking to myself "I wonder if I'll see him reach kindergarten."

And I did.

And I thought I would have more to say about it, but I didn't. I said what I could say: "You guys. I made it to his first day of kindergarten."

And then life kind of slapped us in the face, like it always seems to do, and I had other things to think about related to my son and kindergarten. So I wrote my husband this letter.

Dear Gabe:

I’m sick, and I really feel like shit, and I can’t talk at all and the antibiotics might be preventing this strep from going to my heart but they just make me feel worse in the meantime. So I’m writing you this letter instead of just talking to you, because I can’t. I just can’t talk for more than a few minutes.

It’s Augie’s third day of kindergarten. We have this issue before us, trying to decide if he should stay in the classical school he tested into or whether he should go to the neighborhood school. It’s so stupid that decisions like this matter in kindergarten. We both know that if we take him out of the classical school, he can’t get back in, or at least it’s unlikely. Some other kid will take that precious spot. I know after touring the neighborhood school that it is a great environment. I also know that Augie is reading 300 page chapter books and reading the newspaper to us in the morning and that he might not be challenged there.

I’m just not convinced anymore that it matters.

Now, I don’t believe he would be BORED there. My mother always said there is no excuse for boredom. I had gifted programming for one year for an hour a day in grade school. I can’t say I cared when it was gone. I learned to read at 3 and sat there in kindergarten watching other kids learn their letters and I was not BORED. In sixth grade I completed the impossible geometry extra credit assignment that my brother’s advanced 9th grade class had been given, and I was the only one who had ever done it. I was probably learning some kind of basic math in my actual grade. I’ve said it before, no school will beat the smart out of our kids. It didn’t happen to me.

Now, I know times are different. But more than anything, place is different. I grew up in a working class neighborhood. No one was stressing about our achievement. We were expected to be polite, focused, respectful, productive, friendly to the neighbors. You grew up in some kind of weird conglomeration of places raised by a whole host of people and the more pressing concern was your childhood hunger, not school. There’s some sense that we live in Chicago and there are so few public high schools that are decent and we are not Catholic and private school can be insanely expensive and it goes against our beliefs anyway and the things that happen now matter and you know what, the thing is, I’m tired of it.

Kids at the neighborhood school score well on tests. Not ALL of them like in Lenny or Augie’s current schools, but enough of them. There’s no reason our kids wouldn’t be among them. I could go on and on about how Augie will never get to play sports after school if he doesn’t get home until 5, how I don’t want him riding a bus by himself with no one to talk to for 45 minutes, how hard it is with conflicting schedules and working parents and everything else. I could give so many reasons one way or another. But the real reason I want to pull him out of this school is entirely selfish.

I can explain, but it will take me a minute to get there. Normally, I wouldn’t be home to see my kids after school and the time that someone picked them up would matter to them but would affect me the same. But I have created this opportunity for myself, in spite of some fairly insane obstacles, and I want to enjoy it. I am the one in the family with the job that has taken precedence, as I make more money and do something fairly specialized. I am not saying that to be shitty, that is something you have said yourself. You could have done more with your career and you haven’t so that I could. Neither of us is a world-beater. We can leave that to someone else. But look. In the last nine years, I have spent 18 months pregnant. I have spent 18 months nursing. I have spent 10 months in chemotherapy, 2 months in radiation, months recovering from three breast cancer surgeries. I have continued to work full time through everything, gotten myself promoted, and didn’t even blink when I told HR at the BRAND NEW JOB that I would have to start later because I had to have a mastectomy and begin chemo for recurrent cancer. I have worked through stuff that marked the permanent end of working for many, through necessity or choice. I don’t want to stop working. There’s no reason to do that now.


How did I end up here? I work from home several days a week regularly and can work from home almost whenever I need to, and I am not a freelancer and I do not work for myself, and I do not work part-time, and I did not take a pay cut. I work for a company with excellent benefits. I have a strange, obscure and nerdy job. I get paid well to do this work. It’s luck, that’s the way I see it. But you know, I made this for myself, for us, too. To me, one of the biggest middle fingers to cancer, and the mommy wars, and people’s attitudes about elitism and ambition and all the things that are supposed to mark success, is me doing this in the midst of all this. I’m not asking anyone to believe I am competent or worthy ANYWAY (in spite of being a woman, a mother, a cancer survivor, someone who went to a public university at night, whatever). I am saying look. I am competent and should be recognized as such.

And now I want to enjoy what I’ve built here.

We fight about housework all the time. I am resentful that I do work the job I do and travel and seem like one of those classic “dads” on the one hand and yet also do the laundry, go to the grocery store, plan and make all the meals, clean up after everyone and all that just like a “mom.” I am alone all day for long stretches of time and I know you envy that, but it gets tiring. So my flexibility is of great benefit to us, with some sacrifices from me. The thing is, even though it’s tough logistically, I really like having Lenny home after school. I am still working, and she needs to let me do that since she’s home so soon after 3 pm, but we can have a snack together and talk for a minute and most importantly I know she is there. Doing her homework in her room or downstairs. Whining about something. Wondering when Augie will be home. Playing. I don’t care if she talks to me. I hate the idea that Augie gets home, we make dinner, and then it’s night. I wouldn’t hate this if I still had a job that required me to be at work downtown every day until then anyway. But the point is this: I don’t. I have this. I have the opportunity to both work full time and pick my kids up from school three days a week. It’s hard, and I travel, and sometimes feel I’m losing my mind. And on the days when I do go into the office and especially the weeks when I travel, the logistics of two kids in two different places with two different schedules seems almost impossible.

The point is this: how long will this last? How long will the kids still want to play together? How long will they want me to make them a snack and talk about their days? How long will I have a job like this? Maybe a few years, right? So I want those years. You know I don’t know how many I’m going to get. Be pissed at me for saying it—I don’t care. I want to see my kids walking home from school TOGETHER. Even if they’re not at the same school.

This strange series of events makes it so that they can go to different schools and still get that—but not if Augie stays where he is. Maybe he will get into Lenny’s school next year and this will all be moot. But even if not, I’m not sure it is really that important. Augie is so much like me. He will find something else to occupy his energy. Hell, Lenny would too—she might be frustrated by not being challenged, but maybe not—maybe that’s a skill in life, learning how not to be bored and how to recognize other people’s strengths and your place in a larger society where not everyone is like you. It’s how I learned that I was smart about many things, but writing most of all. Math too. I was competent at things like art and music but nothing special. Other people were better and smarter and more talented than me about a million different things. That’s not a bad thing to know. I learned how to learn, and what is more important than that? These kids already have that. I mean, I think back to high school, which was extremely rigorous, harder probably than my grad school, and I honestly don’t remember working very hard. I was in AP classes and I did a million things but I also kind of chilled out and didn’t care if I got a B or something. It wasn’t just because it was a different time. I knew a lot of people who were more success-oriented, as kids are today. My best friend says the only time she ever ditched a class was on accident when she had the date wrong for the PSAT or something. And there I was, barely showing up for AP English senior year (and still getting As) and ditching to get to second base with some boy in some abandoned stairwell somewhere in the 9th grade.

We both turned out fine.

But I know which type of person Augie is, and so do you. You married me. You must see something good in it.

Let him come home and get on my nerves and make it hard to work and ask to play video games. Let him be the only child on earth who just wants the marshmallows, no hot cocoa please. Let him sit there reading comic books. I don’t think it will ruin his future. If his school let out at 3 and he was home before 4, it wouldn’t be that big of a deal. I just don’t want him coming home in the dark in the winter. When I’m working, I work. If I can, I take a break, for 5, 10 minutes. I throw the football around with him. I help them with their homework. I help Lenny organize. He’s older now, he’s not three. If I’m on a call I can tell him to read or I can give him his bat and tell him to hit some balls against the garage. I can send them outside to the back yard to play together. I don’t have to watch them every minute. He’s so damn loud I can hear everything from inside the house.

How long until they don’t want any of that anymore? How long until one of us loses a job or none of this is possible? Parenthood is a selfish beast. But I don’t feel guilty about any of this, about anything. I know he’s been at daycare his whole life, and he’s loved it. It’s different now and you know it and I know it.

Lenny rides a bus for 15 minutes and gets home at 3:15. He rides a bus for 45 minutes and gets home at 5. He can do it. He would be fine. He would do well and make friends. He would be challenged.

But he wouldn’t be here for much more than meals. And for most working parents, that is how it is. That is how it was for us for years and I never felt guilty and I know our kids were fine. And don’t get me started on the people who say that “someone else” raised our kids because they were in daycare. That is just complete bullshit and is something that is only said to mothers. I’m sure no one has ever told you that you had a job in IT, therefore you didn’t raise your kids. But we have a different opportunity here. We can never give them summers off, but looking back, we could say that at least for a few years, the worst thing that happened was that they were doing too much of nothing rather than too much of something.

What do you say?

He said yes. We initiated the transfer this morning. Augie should start kindergarten at the neighborhood school tomorrow.