Day 382: I hope you dance

Do you ever have those times when you just feel like a bad parent? I've been feeling that way for a few days now. First, because I was away for three days for my conference. I don't know why I feel bad about this at all--traveling was always a part of my job, and the only reason I haven't done it in a long time is that I was going through cancer treatment, and right before that, I had a baby. It's strange to think that I haven't traveled at all really in Augie's life, except for an occasional night away with Gabe or the week I spent away from the family when they were all sick and I was going through chemo and couldn't be around them. I was away for my conference last year too, but that was probably for the best. I was so out of it, being just two weeks from my diagnosis, that it actually helped not to be at home and have to pretend to be normal.

No matter how normal it is, I felt guilty being away this time. In some ways, it was a treat, so maybe that's why I feel guilty. I had a hotel room to myself, no house to clean, no dinner to make, no kids to put to bed. After 13 hour days I was exhausted, but also relatively satisfied. It's always nice to go through all of the drama of a big event, especially if it's your event, and you are the main organizer, and have it work well. It's like planning a wedding--things go wrong, you drive yourself nuts, and then all of a sudden hundreds of people are there, and things are happening, and it's great and everyone congratulates you.

Nonetheless, I had my strange cancer moments, even in the midst of this event that was so far removed from cancer. One speaker whom I recruited, who has known me professionally for many years, didn't recognize me at first. You cut off all your hair! he said. I received so many compliments on my hair, and it was very hard to know what to say. How long have you had that haircut? Um, not very long, maybe a few months (how long have I had hair, I was thinking)? Your hair looks great! I love it! I can't believe you cut it all, I've always wanted to do that!

No, no I don't think you do. Not my way, at least.

Of course I just said thank you, and I was fairly self-satisfied with the fact that I guess I successfully "passed" and in a big way in such a public venue. Neither those who have seen me over the years nor those who have never seen me before could tell that this is post-cancer hair. I waited so long to be able to walk down the street without it being obvious that it was a little weird to think that all physical vestiges of the damn thing have disappeared.

Almost, that is. I still have the pain in my breast and my chest, all the time. It wakes me up when I sleep on the left side. I still have those back twinges, and I get paranoid. I wonder what's going on with my cycles after having three normal ones post-chemo. I thought I was getting my fourth period Friday, but it appears to be spotting or something. At one point in my life I would worry that a strange or missing period meant pregnancy, and now I just think, cancer. Or, menopause returning. Pregnancy is almost too disastrous of an outcome to fathom, with the potentially cancer-causing hormones and the proximity to chemo and everything.

These thoughts can distract me and make me feel off-kilter, and I feel so distracted already, especially with the house. Houses, I should say. It's exciting but very overwhelming, with so much to do. I am not going to encourage anyone else recovering from cancer to go buy another house, but it's an excellent distraction to have a huge project to take up some of the space of this "new normal" that is hard to figure out. If your post-cancer life is exactly the same, I think you just get annoyed with it. Certain things remind you of cancer, other things just seem stupid, and in general you wonder how it's possible for life to be so similar when you feel so different.

This isn't specific to cancer. I went through this as a child after my car accident, and I went through it to some extent after Lenny was born. I went through it after I graduated from college--for months. I had spent my youth with a goal so specific I didn't even realize I had it until I achieved it. I wanted to graduate from college at age 21, never having been married or pregnant. I thought I was pregnant a few weeks before I graduated, and it turned out to be a false alarm, but I remember how it felt to think I wouldn't be able to do that simple thing. Once I did it, I was so immensely happy, and yet I thought to myself, what now? What do I do now? Now, I know you're not supposed to move, or switch jobs or have affairs or do huge things to change your life in this type of circumstance, but it's totally understandable why people do.

In a way, this house is like a scar for me. It's a sign that life is different. I've written before about my frustration over the lack of physical scars for different things that happened to me as a child. I wanted something to mark my car accident, my epilepsy even. Now, I didn't literally want to be "marked," I just wanted something I myself could see that would tell me that that thing really happened, because otherwise some of it just seemed like a dream. I think that's what's going on here too. Post-cancer should be different than pre-cancer. In some ways, all you want is for it to be the same. You want to look the same, have the same friends, do the same things with your kids, go back to your old self. That's the goal. But things shift, and rather than dump my friends or family or have some life crisis, I guess I've found some ways to remain the same, with some new in the future.

It's strange to think about the future, really. Every time I did that for a while, it made me almost unbearably sad. I didn't stop doing it, thinking of the future, but I didn't expect to be in the future necessarily either. I would think about the future, and what I would miss. Lately, I've been thinking a lot about how things were a year ago. Last May was the hardest month of my entire life. I think I can even say that it was harder than chemo. The emotional anguish was just that--anguishing. And now I have this guilt that I don't feel some sense of extreme happiness to not be in that place anymore. It's so hard to explain.

Let me try, though. Lenny had her dance recital this weekend. That made for a chaotic week, with me being gone. I guess Gabe did something with her hair (no makeup, I'm sure) for her dress rehearsal. I came home Friday from my conference totally exhausted, only to do about 5 hours of work to get the house ready to put on the market. I was cranky and Gabe and I got in a fight. Then yesterday we were busy trying to get ready after I met a painter at our new house, and we couldn't find our tickets for the show and one of Lenny's gloves got left behind. She was pretty upset on the way over there. I felt terrible about that.

I thought to myself that it was a good thing that Lenny is so cute, because I sure as hell don't know what to do with her hair, and my minimal makeup application seemed to work just fine. It was next to impossible to deal with Augie through the 75 minute show, since it was during his naptime and he just doesn't understand the meaning of "quiet." (I can't believe I ever thought he wouldn't talk.) We got through it though--Augie made it until Lenny's routine (she was 15 out of 17th, so that was something!). After all of that, we hosted our book club--at our new, empty house. I had baked in the morning, so we lugged some food and drinks over there with a bunch of lawn furniture. We got there, and realized we didn't have the keys.

No matter, I set up the porch, feeling like a fairly incompetent person at that point. Gabe went home for keys, and I started giving tours of the house. Kids apparently find empty houses fascinating. Plus, there's a park nearby, so they went there for about an hour. Gabe volunteered to take them (bad parent feeling again--I would never volunteer to take seven kids to the park), and almost immediately called for backup. The evening was a lot of fun, though it ended with us learning that Augie, who had eaten about half of a watermelon by himself, is apparently as allergic to that as he is to other melon. Holy diaper rash, Batman. Now I know that's not my fault directly, because he has eaten many a piece of watermelon with no problems, but I still felt terrible. He was just crying when we got home, yelling "Butt! hurt!" and he was tired and giving me that scowly face and saying, "No, mommy!" when I came near him. Ugh!

Today we had the same dance routine, though we didn't lose anything or leave anything behind and we got there early. Augie only made it through about half the show though. But here's where I want to explain why I feel like a failed parent--and it doesn't have much to do with all the things I've mentioned already. Those were just the more obvious reasons.

Last year, at Lenny's recitals, I cried almost the whole time, start to finish. I couldn't stop crying during her two minute piece. She was so shy, and so unsure of herself, and I was so proud of her. For one of the finales, she was carried out by her teacher because she was too shy. All I could think was, she is so beautiful and so precious. Will I ever get to see her dance again? How many of these performances will she do, and how many will I miss, because I will be dead? This year, I thought back to the previous performance when a little girl in one of the routines just stood there yesterday, arms crossed on her chest, pouting, and never moved. Another girl tried to get her to join in, and she just glared, looking terrified. They had to pull her off of the stage, and she wouldn't come on for the finale. Then today, she was fine, smiling, dancing, waving. I shed a little tear for her, it made me so happy.

But I didn't feel particularly emotional about Lenny herself. I was proud, even though she was unsure of the steps (I guess it would help to practice...she doesn't seem to need to practice gymnastics, so with our limited time after work and school that might be the preferred sport!). I was happy, she was cute. I guess I just expected to feel some huge sense of relief or wonder, since a year ago I didn't know if I would see her dance again. I expected to feel some overwhelming sense of happiness, to want to just grab her and hold her.

But I just felt normal, normal pride, normal love, nothing more or less. This weekend I continued to get on Lenny's case about all the things I normally do (eating, taking forever to do things, cleaning her room) and I continued to hold her and read to her and tell her I love her. I did her hair in a half-assed way and told her the "special word" for her costume was "tuxedo." I laughed to myself as she played tuxedo wedding with her stuffed animals (she also played planet rescue with the next door neighbor boy, which involves Diego-style rescues, only not of animals, but planets). I just didn't do anything differently, which felt somehow wrong.

Maybe I'm just too tired and annoyed with the Bulls to make any sense right now. I had a great weekend--don't get me wrong. I just sometimes feel strange in normal circumstances, like I'm leading some kind of fake life, or living my life but not well enough. I shouldn't have rushed my daughter, I should have cried with happiness for her, not another child, I shouldn't have felt so glad to have Gabe come home after four hours by myself with the kids today. These are the things I wanted to come through cancer for, right?

Maybe not--maybe my life just as it was, messy and overwhelming and imperfect, was what I really wanted. The song tells us that we should wish for something else for those we love. If given the chance to sit it out or dance, I hope you dance. That is supposed to be the lesson I have learned. But it feels more like this--I hope you dance if you want to, and I hope I get to be there. I might still sit it out. But I'll be there. Right?

Day 326: Life Goes On

This will probably be the shortest blog I've written since I've started this thing, except for the BRCA results blog. My life has just been way too hectic to write about anything, or even to sleep or eat normally, in the last week or so. Once some of the dust settles I will have quite a long blog to write, because I definitely think it's interesting how the everyday excitements and stresses of life become complicated by a cancer diagnosis. You just think about things that don't enter other people's minds in the same situation.

One of the things that has happened is that I have decided to change jobs internally at the Fed. It's a long complicated story, especially because many of you don't know what I do for a living anyway, and if I described this new thing, it would not sound that different. My title remains the same. My boss will eventually change. I may or may not keep my office. But the decision was a huge one for me, and ultimately meant that I will be doing something very new, outside of my comfort zone, rather than transitioning into something else that I have years and years of experience doing. I will, if I am successful, become an expert in financial markets and all that means: derivatives, trading, wholesale payments, switching, etc. Will I be able to do this? Who knows? Am I afraid of doing this? No, not at all. I've done scarier, more foreign and uncomfortable things, all quite recently. It was very stressful to decide--let's not pretend that just because you have dealt with cancer everything slides right off of you. That is too much to ask, that people give up their normal emotions along with everything else. But there is fear of the unknown at work, and then there is fear of the unknown after death, and the two really don't exist in the same universe of problems.

I'll write about all the other stuff later, so as not to jinx anything that's going on over here. Since this is the TMI blog, I will update on the fact that my period was not a fluke, which is something I secretly feared when I wrote that happy blog about it returning. Since I was on antibiotics for the mastitis, I worried that the bleeding was just a weird side effect, since that can happen with Cipro on rare occasions. Apparently not--here it is, 3 weeks later. Yikes. It scares me to think that my periods would be so frequent so quickly after cancer treatment, since they don't understand how hormones affect triple negative cancer. Oh well. I guess my body is just fighting like mad to get back to normal.

And for the most part, it is normal. I'm mostly normal--we all are. We just have those strange moments at our house when we talk about the future, about exciting things, and then I say, and if I die, this would provide you and the kids more security! Or Gabe says, I can't imagine making this change if you won't be here! And then we kind of bitch-slap each other and move on. So stay tuned.

Day 306: For My Daughter's Fifth Birthday

I am going to do what I promised, and include some kind of birthday message to Lenny, who is five today (at 5:48 PM…do mothers ever forget those things? I suppose not, after the two and a half hours of pushing). However, I have a rare opportunity to write about something positive on the cancer front, so I thought I would update on that first. On Sunday I was starting to feel better from the antibiotic for my mastitis; my fever was gone, my breast was still red and painful but it wasn’t nearly as swollen or hard as on Friday and Saturday. I decided to go to pilates, so I went to the bathroom to change. That’s when I almost had a heart attack.

Less than three months after chemo ended, six months after the last one, I had my period.

At first I didn’t believe it. I felt like I was 11 again, wondering what the hell that was. Then I thought, so that’s why my hot flashes are gone and my libido is back! My hormones have gone back to normal almost as suddenly as they disappeared altogether! I didn’t think it was possible to be so excited about something that is generally speaking a pain in the ass. When I was a month shy of 12 and I had my first period, I found it annoying more than anything. I was a tomboy and this whole menstruation thing just seemed like an inconvenience. My mom was worried that I would have the same issues that she had with anemia, pain, etc., so she wasn’t happy for me either. I enjoyed not having it for the duration of my pregnancies, and it didn’t return for 3 months after I weaned Lenny, though I started having regular periods when Augie was less than three months old even though I was exclusively nursing. I can’t say I welcomed it any of those times, though I suppose I was relieved to know things were working normally.

This time I was so happy about it I actually teared up a little. I called Gabe upstairs and told him, and we had another of those strange moments that only happens in cancer-land. My husband started hugging me and crying, telling me I should believe him now that I will be fine. Then he said “I guess I should go schedule that operation now.”

Is it normal for a grown man to respond to his wife getting her period with relief and happiness and a promise to get a vasectomy? Well, who knows what’s normal anymore. I am just ecstatic that my body has recovered so well, and so quickly, from chemo, after it literally brought me to my knees not that long ago. If I didn’t have this hair, you might never know I had gone through chemo at all. The long-term effects seem to have escaped me, at least those that are less insidious. On a happy day like Sunday, I could almost forget what I went through with chemo—almost. I can’t forget surgery and radiation, especially with this continued redness and pain in my breast, constantly reminding me of what I went through. In fact, I wonder if this mastitis is somehow related to my cycles, since I had it the first time almost a month ago. It’s possible that this sign of normal womanhood could bring some real suffering my way for a while.

Regardless, this little bit of normal made me so happy that I really wanted to celebrate. It was too late to find anyone to celebrate with me, so I took myself out for a steak dinner and had too much wine while Gabe took the kids to a birthday party. If anyone else thinks this bit of random news is a cause célèbre, let me know and we’ll go out on the town.

This should be the clinching example of how attitude doesn’t affect cancer’s outcomes. I thought I would be in menopause forever. My hot flashes were so severe, my sexual side effects so extreme, that I just didn’t see how it would be possible to go back to normal. And yet my body did—just like that.

So there’s the cancer update. I’m on a prolonged series of antibiotics for this mastitis and therefore I’m on hiatus from rowing but other than that my life is just the same. Except that my little girl just turned five. What do I make of that? It’s hard to put into words, but I promised to, so I’ll try:

Dear Lenny:

Today you are five years old, and I am writing you a letter. We have a mug at home that I use to drink my tea that says that a letter is a hug from a friend who is far away. A letter is not, however, a real substitute for a hug, or for being together. Words are no substitute for just being there. And I probably won’t allow you to read this letter for some time, until you are older, so this is a present you won’t even know you have received.

In some ways this entire blog is a long letter to you and your brother. I write it with the selfish hope that if I don’t survive this cancer, you will know something about me, other than that I loved you and cooked good dinners and made you laugh. It seems to me that almost everything about how a parent loves a child is selfish. We want things for you that you might not care about, we steep ourselves in denial about anything potentially bad that could happen to you because we couldn’t bear to see you go through it. You are the heart that walks away from us.

It is too easy to say that I can’t believe you are already five years old. I can believe it. Time moves so slowly for you as you wait for the next thing to happen, not understanding what that thing is or what it means. You wait for something for five minutes and it’s 10 hours in your mind. You ask about what it will be like to be grown, what you will look like, where you will live, whether you will always be older than your brother even if he is bigger than you. We sing to you on your birthday and kiss and hug you. Your father cries. He wishes time could stand still and you would stay little forever. I wish that time was just slower, until I realize that if I could choose, I would go into the future so that I could know you as a grown woman, and see the answers to your questions for myself. It is my selfish fear that I won’t be able to do that, but that is not what gives me pause.

I am astounded by you, by how you are such a…Lenny. Parents like to say that their children are a part of them. That is simply not true. Children are just small people, whole unto themselves. Perhaps there are some things, like table manners, that we can take credit for, but most of the things that are marvelous about your kids are things that have nothing to do with us. We did not give you a photographic memory. Two weeks ago, you performed in a play. Two nights ago, you decided to have your stuffed animals put on the same play. You recited the entire thing, all of the parts and the narration, without looking at a single piece of paper. When I play the insufferable parent and I say “remember when you were 18 months old and…” you often actually do remember. This talent of yours has caused us significant embarrassment as parents, and has been continuously entertaining as well.

But it’s not the only thing you bring to the table. Regardless of what convention tells us, we did not make you smart. You were alert from birth, watching us, waiting to learn about the world, too interested in everything to sleep. We taught you to read, never used baby talk with you, assumed you had some reason. But when you pointed to a photography book at your grandmother’s house when you were fifteen months old and clearly said “Signs” (the title of the book), I had no more idea what to make of that than anyone else. The things you know continue to amaze me years later.

We did not make you shy around people and comfortable on a stage. We did not make you fragile, or funny. We might have taught you empathy but could not teach you the appropriate times to use it. We did not make you fussy, or willful, or contrary. We sure as hell didn’t make you good at gymnastics, my least favorite sport in the world.

We didn’t even give you that beautiful red hair—not really. I don’t have any other hair DNA to pass on but red, and your dad is apparently a carrier of the gene. The end result was completely out of our control. Now that I have short hair that I gel up into abstraction, people wonder if you even belong to us. Where did you get that hair? My mom, you say. But it’s yours, and I know you want to hold onto it right now.

I do have to take credit for some things, even if I would rather not. You are an inherent worrier, but I have given you one of the biggest reasons to worry that a five year old can have. I am truly sorry for that and for all the times when you couldn’t sleep during this past year. I’m sorry that you have seen some of your friends less often and that you missed out on things. I gave you this burden, but I didn’t tell you how to deal with it, because I really didn’t know how. I was concerned about my impact on your friends and classmates, not wanting you to have to answer questions about cancer. How could I know that you updated everyone about my cancer treatment all the time? How could I predict that you gave a little preschool tutorial on chemo when someone asked about me and you said “my mom is on chemo. It’s medicine for people with cancer. It made her lose her hair and it can make her sick. You get chemo through a needle in your arm. Soon she won’t have to do it and she will feel better on radiation.”

As with many things over the last five years, I just didn’t see that coming. That is the gift you have given me—the gift of being continuously surprised. It is difficult to find a way to thank you for that.

There are many things I wish for you. Back in November I included a poem in the blog that I had written for you that gave voice to many of those things. I could say many trite things about wanting you to be yourself, to enjoy life, to have no regrets, to find something that you love to do, to be a part of improving the world. But the truth is I don’t know what I want for you. I just want to know that you’re there.

Perhaps that is what I am trying to pass on to you, this strange ability to be a comfort just by being. It might be a better way to walk through life than any other. Or maybe I tell myself that to make it seem acceptable that I am not the things that I am not. For example, I know that you are a daddy’s girl through and through. I know that I am not the perfect nurturer. I have been stern, and angry, and busy, and sick, and bald. I read the newspaper and ignore you. I am the reason we watch sports on TV, not kids’ shows. I leave the house a lot to exercise. I cook and clean and collapse on the couch and I rarely get down on the floor to play with you. I am, quite frankly, not the fun parent, even if I am often the funny one.

So what am I? I am there. I always come home, and when you are upset you ask for me. I know that I have the ability, good or bad, to be like a piece of furniture in your life, that seeing me there is comforting and expected. That is how I feel about you. I want to see and talk to you every day, but if I can’t, it’s enough knowing that you’re seeing and talking to someone else. A man told me once that if he didn’t see me all of the time, it would make him sad, but he wouldn’t miss me, because he knew he would see me again. Then he stopped and said, but even if I didn’t, it’s enough to know that you’re out there in the world, and that you’re all right. If I ever get to a point where that’s all I can ask for, and the last thing I know is that you and your brother are there, it would be enough. I love you.

Happy birthday, Lenny.

--Mom

3/8/11