Wednesday, October 31, 2012

Happy Halloweens

I've mentioned the steroids previously, but the day before, the day of, and the day after my chemotherapy infusion, I take four pills of powerful steroids to ensure that none of the fluid I will receive collects in places that it shouldn't (like my lungs or my brain). It's a remarkable medicine, like they all are, but this one is funny because it makes me absolutely wired.

An hour ago, I woke up ready to go downstairs and do 30 minutes on the elliptical in the basement (I would have much rather walked outside, but I could hear the rain falling in sheets). I was so proud of myself for sleeping the whole night before my second round of chemo without any Ativan. In all honesty, I'm not at all nervous for today so I didn't feel like I needed the Ativan even though I felt completely entitled to it. My alarm clock is only two feet away from my head but I can't read it until I put my glasses on. When I did, I was shocked to see that it wasn't 6AM like I thought it was. It was only 2:02. Huh.

I could tell there was no way that I was going to be able to fall back asleep. But I gave it a shot for about 45 minutes. Then I quit and came downstairs to write and get some work done. (Exercising feels inhuman at this hour, steroids or not.) So here I am. Not really in need of writing as therapy for emotional distress, but rather, in need of it as something to occupy my overactive mind and body for some of the next three hours until my kids wake up. And in want of it because I've started to think of this space more and more like a public diary, even a memoir if you will, on those days when I don't feel like I need it to be my therapy.

Since I have nothing particular to write about and my stomach is growling, I'll go grab a bowl of cereal (with my organic milk, sigh) and hopefully come back with an idea. ...

My first proof that it really is far too early came when I opened the dishwasher to grab a clean bowl and the dishes were still hot. Oh well. Tonight I'll be sure to take an Ativan.

As I crunched my sugar-less Grape Nuts in the near darkness of my living room (lit only by the strings of ghost and pumpkin lights hung across the mantle), I thought about the day ahead. Since it's Halloween, I got to thinking about that.

Like most kids, I loved Halloween. The first Halloween I remember I was probably only about five or six. It must have been one of my last Halloweens in Duxbury, because we lived there at the time, and we moved to Canton when I was seven. That Halloween, I decided I wanted to be a ballerina. I think Rachel was an astronaut. Thinking back, it was a funny choice of mine because I never did ballet, I never cared for princesses, and that was the last girly costume I wore until I hit college (and those girly costumes had a different flavor). Lots of embarrassing family photos adorn my parents' house of later Halloweens with me dressed as a football player (I wore my Dad's BC game shirt) or a washing machine (Rachel was the dryer).

On Halloween, my parents would get home early from work and we would carve the pumpkins. I always loved playing with the gooey insides and threatening to put it on my Dad or Rachel or Sean's shoulder (I think my Mom was already hiding in the other room with her book by this point -- she's a reluctant Halloween-er).

Once the pumpkins were lit and the newspaper full of goo was emptied into the trash, it was time for trick-or-treating. On that ballerina Halloween, I remember my parents trying to convince me to put on a warm coat or pants over my leotard, tutu, and tights. But that would have totally ruined my costume so I refused. They tried again, but I was more stubborn than they were. That, or my parents had a better technique -- they let me go out without a jacket and see for myself. So I did, and a few houses later I was begging for anything to keep me warm. My Dad had quietly stashed my coat in the red wagon that he used to wheel us around, and costume or no costume, I put that thing on and zipped it up tight. Of course, I was still cold and I'm sure my Dad dealt patiently with my complaining. He was always so good like that. And he was, and still is, so much of why I love Halloween.

When I got older, and Halloween was no longer about my Dad pulling us around in the red wagon, I wasn't such a fan. In middle school, I wished I could just disappear for the night. I was too old to be a kid but too young not to be. It made me so sad to see kids egg a house or even toilet paper it, and I worried that someone would fall off a ladder trying to clean up the mess. Back to that far-too-heightened sensitivity again. Oh well. Part of me hopes Teddy throws a few eggs or wastes a few cans of shaving cream when he's in middle school. Only on the street of course, and never on anyone's house or in someone's eyes. Sure, that all sounds likely.

By college, I dealt with Halloween, too shy to enjoy wearing skimpy costumes, but too wrapped up in college culture not to. Now that I've got these fancy new boobs, however, I may be singing a different tune next year. I'm kidding. Kind of.

Anyways, I started to love Halloween again when Teddy was two. I tried to love it the two Halloweens before that, but the poor kid hated Halloween as a baby. I guess I can't blame him. It is kind of odd to have perfect strangers dressed in costume ringing the doorbell for candy.

But when Teddy was two and three, we were settled into our wonderful new neighborhood and Teddy (and Brian and I) had grown close with neighbors that we all adore. Brian volunteered to stay home and pass out candy and the last two years, one of my siblings joined me and Teddy for the trick-or-treating adventure. When Teddy was two, Rachel was in town, and last year, Sean kept me company. I remember those nights so clearly, and loved every (OK, almost every) moment of them. I could have done without the moments of physically forcing Teddy to wear his jacket. You'd think I would have learned, huh? Because that kid is hot-blooded, and a few doors down, he was sweating and begging me to hold his coat. Serves me right for not learning from my Mom and Dad's parenting techniques.

Eventually, we joined a huge group of neighbors and their kids and walked around our perfect-Halloween-sized neighborhood. Rachel, and later Sean, and I laughed as Teddy tried (and failed) to keep up with the group. He'd always be the last one to the door, typically having tripped at some point on the way. We'd help gather the candy that fell from his bag and I'm sure he left a little trail of Kit-Kats and Reese's Peanut Butter cups that we missed in the dark. Then we'd stand back and watch him wait for his turn to fill his bag. The first time I watched this, and even the second, I found it to be such a remarkable thing. I was watching Teddy become independent, or at least, more independent, and it kind of melted my heart.

I've dropped my kids off at full-time day care since they were little babies, so I'm not really one to get all emotional at the sight of my kids doing their own thing without me. I've heard Moms say it's hard when their kids aren't sad to see them go, but in all honesty, I've never felt that way. The relatively few instances when my kids have yelled for me at drop-offs, I've had to fight back the tears and the impulse to run back in and scoop them up. Typically, however, drop-offs are very smooth, and every time they are, I'm nothing but elated, thankful for their great teachers, and even a tad proud of myself and Brian for finding a school where the kids would be so happy.

But watching Teddy run ahead without me on Halloween was powerful for me. He didn't really want me for company, or at least, not for primary company. He wanted his friends. At first I tried to make conversation as we walked between houses -- What kind of candy did you get, buddy? But he didn't know and didn't care. He was just trying to keep up with the group whose legs moved much faster than his did. So I quit trying, and just became the person that held the parts of his costume that he disassembled as he heated up. I cherished the sibling bonding time and I enjoyed peeking in neighbors' houses to see what the insides looked like. All the while, I watched my son from a distance. And as I watched him be very cautious of any scary Halloween decoration, and as I listened to him mimic the happy screams of the group when they happy-screamed, I loved him so much.

This year, Teddy decided to be a pirate. Since Annabel is going through a phase where she constantly wants to take her clothes off (I really hope that ends before she reaches elementary school, and it better darn well be over by high school), we thought our best shot at her costume was whatever costume Teddy wore, so in theory, she'll be a pirate too. We went to a Halloween party last Friday night and all we got on her were the pants, so I'm not expecting much. But being costume-less and shoeless didn't stop her from spinning around, shaking her hips, and bouncing her shoulders up and down to the DJ's music, alone in the middle of the dance floor last Friday. So costume or no costume, she's got the spirit, and she loves herself a piece of candy.

The last few years, I've dressed up in theme with whatever Teddy chose. Last year, he was Woody from Toy Story and I was Jessie. This year, I have my modest pirate costume ready. If I purchased the women's pirate costume from iParty I certainly would have been able to flaunt my new boobs, and most other parts of my body, but I don't think tonight's post-chemo neighborhood Halloween party is really the time or the place for that. So I went with a big long and messy red-haired wig and last night, per Brianne's good idea, I added dark beads and feathers to it. I have a pirate scarf, eye patch, hook, and a jacket, which will definitely be more fitting for the occasion.

Brianne and Seamus are coming over tonight to see the kids and pass out candy while Brian and I take the kids out. Did I mention yet that they are the best? I can't wait for their little one to join the fun next year. And it's not the steroids talking when I say that that thought makes me want to jump out of my seat with excitement.

It's a neat thing watching our kids become more independent. Annabel won't even let us help her get dressed or put her shoes on anymore. I can do it! she yells, and then she flips on her jacket or puts her "snee-coes" on the wrong feet. But I don't dare switch around her shoes or fix her jacket when it's upside down, because if she put them on that way, that's how she wants them. So I let her be. Just like my parents did with my tiny ballerina costume on a frigid night, I'll wait for her to figure it out for herself.

A few days after my first chemo treatment, I asked my Mom what she thought of it. It went great, huh? She agreed that it had. I told her that I hadn't been scared but asked her if she had been. She paused, smiled, and said something like, Well, I did have to watch my kid get chemotherapy. Good point. And that can't be easy. I've said it several times to different people, but I'll say it again for the record. A lot of the time, I think it's easier being the patient than being the loved one of the patient. I can't even imagine watching any family member or friend, or (gulp and shiver) one of my children go through this. In fact, the most oddly comforting thought I have about my chemo is (knock on wood) that I'm not driving Teddy or Annabel in for treatment. Because I know what it feels like when they stick me with the IV, when my Allies start to flow into my veins, and when the symptoms set in after that. I know I can bear them and I know I will win. But I don't know how I'd handle watching someone I love bear this burden.

Meanwhile, my loved ones need to do just that. They are forced to sit back and watch me keep up and keep going. I'm sure they feel like I do when I watch Teddy run full speed down the grassy hill of a neighbor's house after he collected his Halloween candy. I desperately want to be right by his side to hold his hand so he doesn't fall. Or I want him to be clad in full hockey pads, helmet and all. (Every year I try to get him to be a hockey player for just this reason!) But every year that he chooses to be something that doesn't involve full padding and a helmet, I need to just stand by, warn him if I see danger, and be there to help him pick up his candy when he falls. Then I need to watch him run ahead again without me. And I need to appreciate the joy in that sight. Because it really is one of life's "little wonders."

Yesterday when I was in the shower, my stubbles of hair started to fall out in large clumps. I knew it was coming because it's time, and because for days it would come out with the slightest little pull. At first, I started to cry at the handfuls of hair. I yelled for Brian to pause the Wii game he was playing with the kids and come up (Annabel is quickly figuring out that her remote control doesn't do anything, and she's not happy about it). He saw my hair in my hands, and assured me that it will all be OK. I know it will, I told him, and he gave me a kiss. But when he went back downstairs, I cried a bit more. Then I remembered so much of what I have written about. That I am who I am when no one's watching. When I'm not in Monique's salon surrounded by my family and friends. When I'm not posing for photos that the whole world can see. I remembered that this period of my life will be over soon. That the medicine is working. That I need to be strong for other people, not just myself. And I quickly pulled it together.

In the next day or two I will likely be really bald, not GI Jane bald. To others, I may not look tough or strong or athletic with that hairdo, or lack thereof. Many people, especially strangers, will probably just think I look like a sick cancer patient. But I promise you, even if my stomach, chest, feet, mouth, or breast is hurting, or even if I just got over a terrible nosebleed, I don't usually feel like a sick cancer patient. I feel like a strong and healing fighter; a healthy mother, wife, sister, friend, and daughter. I'm grateful and I'm proud, for so many things, including for the fact that I'm no longer afraid of the time that I must spend by myself. In fact, I've kind of come to love it. I've got a few hours to go before the kids wake up, we get them ready for school, and we leave for Dana-Farber, and I've got much that I still want to do (OK, that must partly be the steroids talking). Either way, I no longer feel alone even if I am. Because being in the shower with my hair in my palms was sad, but it was bearable. And even though I sometimes need to run ahead without holding anyone's hand, I'm certain that if I fall, someone will be there to help me pick up my candy.

(PS -- After re-reading this entry and realizing its length, I think a better title would be "Halloween Blog on Steroids.")
Halloween 2011.

My Lil' Matey, 2012. 

Annabel and Uncle Sean at Annabel's classroom Halloween party.

1 comment:

  1. Dear Tara, your inner strength and determination is inspirational to me and I think to all of us at First Parish. We are with you in spirit every moment of every day. Here if you need me, Buffy