April 2012


“Time to brush your teeth.”

“Can I get some water?”

I sighed. It was always something.

“Yes, but it has to be quick, okay? It’s time to get ready for bed.”

She nodded. We traipsed back downstairs. Ella helicoptered around me as I went to get her cup, and then turn on the tap. When the cup was about 2/3rds full, I stopped it and put the plastic sippy on top. Making sure it was on tight, I handed the cup down to her. Those big brown eyes stared up at me as she drank. Sluuuuuurp. Sluuuuuuurp. She occasionally came up for air: inhaling in a big way for such a small girl, she quickly returned to sucking on the square tip.

“Ahhh. All done!”

“Are you sure?”

“Uh-huh.”

“Positive?”

She nodded. I put the cup in the sink to deal with later and scooted her back upstairs. Bathroom.

Ella pulled out the stool and stood up on it. I forget how small I was, once. She reaches her whole arm out to get her toothbrush, and I help her get toothpaste on it. It’s hard to really call it “brushing,” but it’s better than nothing.

“I need to go potty.”

“Okay. I’ll be right outside, okay?”

The door closes awkwardly. I give it a few minutes, pace up and down the hall, check her room, get some matching pajamas out and lay them on her bed.

“Um, Sarah?” I hear from the door.

“Yes, Ella?”

“I need help.”

This was, I admit, one of the stranger parts of babysitting. I realize parents put the life of their child into my 14-year-old hands, but going to the bathroom feels too personal. What could she need help with? Then again, I’ve been successfully doing it on my own for years.

When the bathroom chores are out of the way, she carefully washes her hands and walks to her bedroom.

“Can I wear the stripe ones?”

“Why don’t you just wear these?”

“I want the stripe ones.”

“Okay,” I say, picking up the polka-dot pajama set off her bed. Stripes, tonight. I rummage in her top drawer to get them out. Finding both, I help her out of the rest of her clothes and into her pajamas. The head always makes me most nervous; it seems to always be the hardest hole for Ella to get through, and every other kid I’ve babysat. I toss her clothes into the laundry basket in the corner and help her into bed. Here comes the part I love and dread at the same time.

“Will you read?”

“Of course, Ella. What do you want?”

“The alligator one!”

“Get under the covers, okay?”

“You come too.”

“What?”

“Mommy always lies with me.”

“Oh. Yeah, let me get the book first, okay?”

She smiles. And how can you resist that? Still, this is why I dread it. It’s not the sleeping next to her, which I won’t actually do if I can help it, but it makes it awfully hard to sneak out without waking her. I settle in and she leans her head on my shoulder to see the pictures.

“Al the Alligator was an unusual alligator. He stood on two feet, and walked around, just like you and me. One day, he decided to visit his friend, Ollie the Ostrich…”

You know. One of those. I got through it, and closed the book.  “And that’s the end,” I whispered.

“Mm.” She nodded sleepily. A few seconds passed. “Can you read another one?” her tiny little voice said to me.

“Just one. I’ll be right back.”

A story about an alphabet family. Cute – and relatively easy to read. I’m always afraid I’ll get the beat wrong or not rhyme the right way. Silence. I slowly look to my left. Eyes: closed. She shifts down so her head can be totally on the pillow. But now, after a few times babysitting Ella, I know: it’s make or break time. One false move can change everything. And so, I wait. She breathes so peacefully, and I wish my sleep was so innocent. That nightmares involved green monsters and not friends or family. Also, that she’d wake up with boundless energy, again, ready for another fun day. Homework was increasingly leaving me sleep-deprived. I bounce these thoughts around, watching the small alarm clock. Sitting in absolute silence like this feels like an eternity. Finally, when I deem it’s been long enough, and her breathing pattern is a touch slower, a touch steadier, I prepare for my exit. This is a process.

An inch at a time, I roll down the covers on me, taking care not to move anything near her. I slide my knees up, gently slipping one foot dangerously close to the floor. It always creaks. I pause here, thinking it has been nearly too much. I wait another 30 seconds, and grip her nightstand for support. Cringing, I let my foot take most of my body. The other comes down, I slide the covers back on the bed, and pause again. I forget to breathe. I glance at Ella. Nothing yet. Tiptoeing, I pick up my shoes on the floor and get to the hallway. Gingerly, I close the door.

Exhale. The stairs are a little work, too, since they creak a lot, but I manage to dance down them and enter the living room. I pick up a random book and wait.

“Sarah?”

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So, heads-up: cancer costs a lot of money. Besides knowing how crucial health insurance is, and how much it affects the jobs my mom can take, if any, I have not really asked about the expenses. See, it’s now a pre-existing condition, and insurance has the right not to cover the treatment my dad needs. Suddenly, when I was home, the reality of insurance, coverage, dependents, spouses (and partners) came crashing down. My mom had some cool job offers. On the plus side, they’re in the medical field, which could mean it is easier for employees to switch, receive benefits, and be set. But just as easily – not. What’s interesting is how much hinges on how good your insurance is. This is something I finally learned at my current (and first) job: a lot of the cost of keeping me on as an employee is the money I don’t “see.” Procedures, specialists, medicines: these all cost money. And so far, knock on wood, the only thing I’ve had to pay is a $20 copay per visit (pretty standard), and a slight cost for medicine I need from the pharmacy. To have someone with years upon years of medical training examine me and tell me how my body is doing. Such as getting the blood test to confirm I didn’t have Lyme Disease after my boyfriend pulled 4 ticks off me. Getting baseline blood tests to see what was “normal” for me, what was high or low, and advice on how to handle it if I needed it.

How much does cancer treatment cost? I don’t know. A lot. Not $500 a lot. Tens of thousands or more, I expect. Hundreds of thousands. How much is still out of pocket? I don’t know. So I was intrigued, then ashamed, of this article I stumbled upon: “When life hands you cancer, make cancer-ade: via lemonade stand, 6yo boy raises $10K for dad’s chemo.” At first I, like the author (kind of) suddenly wondered if I shouldn’t start a lemonade stand for my dad. My parents have helped me with everything: helped pay for a very expensive private college education, added to two years of private boarding school education, my first apartment, a car…I have been incredibly lucky to have such supportive and able parents to aid me in my journey to “adulthood,” whatever that means. They’re still covering student loans for a bit, to help me get started on my own. Hah. I’m hardly on my own yet; I don’t know what I would do without such a family team. I can take my full rent, I can take accountability of my own loans, I can write a check from all I’ve saved up – not knowing if it will make a difference, a dent. Or if it’s unnecessary. Or, more likely, they wouldn’t take it.

But then…why do I have to do this? Lucky for us, this kind of cancer is more common, and the therapy shouldn’t last even half a year. In the article, she writes,

First, hooray for this child. I hope his dad gets the treatment he needs, that the treatment is successful, and that the family doesn’t go into debt or have to forego treatment for lack of funds.

But second: this is a disgrace. I hate it when stories like this are flogged in media as “feel-good” stories. This story should make America feel ashamed, not feel good. Seriously? A working father gets cancer, and the family has to rely on charity, and a lemonade stand manned by their 6 year old son, to obtain life-sustaining medical treatment?

Well, ouch. Here I was full-steam ahead and a brick wall appeared out of nowhere. As @bobrk posted on Twitter (yes, Twitter. Evidently it can be cited in papers now), “@marykvalle @chemobrainfog @xeni My wife’s mastectomy was over $102K Each chemo is $3K or so. Without insurance we’d be bankrupt.”

I…but…it…OK, so this needs to change. Somehow? But it’s not, not right now, and my dad has cancer right now. Now I feel appropriately poor and ashamed, and I am not typically either; I have a job I like and it allows me to pay all my bills and still put savings away, and I’m proud of where I am. Anyone else? Thoughts on this? Mom, Dad, can I write you a check?

Of course, now there’s the “money can’t buy love,” and how cold could I be if that’s what I offer…but, I disagree. As I wrote previously, I wish I could be around more when he is doing radiation, but I don’t live within driving distance anymore, not really, and for my job summer=workworkwork. You never quite know how strange it is to not be able to “just drive home for the weekend” until you can’t. But I digress.

Paying taxes: meh

Tax Season: no fun

Getting money back for the un-fun Tax Season: sweet

Student Loans: no good

Cancer: worse

I’m so confused.

Today I decided to “clean out” some of my Friends on Facebook. I went from 395 to 324 by the time I was done. I doubt most of those people will notice. Because we haven’t actually interacted in…wait, I can’t even remember. If you were one of those people who didn’t make the cut and care, send another friend request. That’s the cool thing: it’s not permanent damage. Now, if I were in middle or high school, it’s likely this would be a big deal:

“Oh my god, you know that girl in English class? The one who sits in front of me? She de-friended me on Facebook.”

“For real?”

“Yeah, can you see her profile?”

“Um…oh, yeah, I can. Oh my god. I can’t believe she’d do that!”

“Wait, me but not you?”

And so on. Perhaps this can only be said for girls; we’re known to be catty at times.

 

But, though I may have been rather harsh on this round, 71 all at once, basic criteria were as follows:

  • We have not interacted in a year or more
  • I don’t remember where I know them from
  • I find I don’t care all that much about not knowing every detail of their lives they decide to post on Facebook
  • The profile name has changed so drastically I don’t even know who they are
  • The profile name has changed so drastically, and I can’t determine who they are from the picture
  • We knew each other in college (or high school. or elementary school) but never talk now (often falls into the first criterion anyway)

This is not to say it was easy. Some weren’t. Some were. Did I delete people I was still a bit curious about? Yes. But being a nosy neighbor is generally not my style. Generally. I kept some. Did I linger on people and wait for the list to re-load before I made my decision? Yup. Did I remove certain friends from some circles but not others? Yes, and that was pretty hard. I removed some camp friends, some high school friends…but not others from the same circle. I’m better friends with some than with others.

One of the first, and weirdest, was my first ever crush. We reconnected on Facebook some time ago (Honestly I have no idea when, or who sent the request. Probably me.) and besides a single “Hey! Been awhile! How’s life?” post on each other’s walls, I saw pictures and description boxes of his life, more than a decade later. We couldn’t really reconnect. What we had in common then we probably don’t have in common now. Oh, A. Remember that time I asked you to the Beach Boys concert and you couldn’t go? Hardest phone call of my life, up to that point. But life moves on. We grow up.

And that’s okay. It’s normal. I would argue that it’s healthy. Yes, there are some friends I probably should have deleted but didn’t and some friends who might notice I deleted them.

But hey. If you really want to catch up, just find me. Press the button to become Facebook friends. I’ll say hello.

Two specifically good things happened today:

My company won a contract with a brand new customer today, and a close friend and coworker, at long last, got his first win. Everyone cheered and clapped, and everyone’s spirits, across both offices, were lifted. I’m not super competitive by nature, I don’t think, but winning on a proposal is a pretty awesome feeling. When you write the winning proposal (not me, this time), it’s even better. It’s like…learning that the sweet apartment you were in love with was finally available and affordable. I don’t kid about finally: it can take several months, sometimes years (this is rare) for a decision to be made by an agency.

George Zimmerman, the man who shot Trayvon Martin, is in custody and has been charged with second degree murder. <Bad part: it took them 45 days to do this.> I look forward to this case being fought in court, not through the media or pleading websites. Justice, perhaps, though I know it will be a long battle. I’ve already discussed some of the issues I see with it.

There was some losing today – though I couldn’t help but laugh at the absurdity of it all. With Santorum out, the political race for President is surely heating up, and, frustratingly, the ridiculousness of today will be nothing compared to August. Today, Romney tried fighting back on the Democrat’s accusations of the “War on Women” by the GOP (and conservatives in general). It is Obama, he said, who is waging “the real war on women.”

Go ahead. Laugh. It’s okay. I did. I caught this while I was in the breakroom at work today; there was just a little blurb (more tonight! kind of deal). I stared at the TV – I could not have heard what I thought I heard. They messed that one up…right? Wrong. No, he sure did. Why, do you ask? How is someone who has supported laws that denied women certain rights – but not men – actually saying Obama has instituted a war on women? The economy. Because it is one of few weaknesses Obama has (though not if people actually looked at accurate graphs and statistics. It has been rough. But in fact, getting better. Promise. And jobs have increased.). Yessir, more women have been hurt in this economy than men; have lost more jobs. Fact: there are more women than men in this country, today. So…yes. I can’t even…just read this.

But I want to end on a good note, or I’ll rant about politics all night.

Win: Work (I can’t tell yet, but maybe later this week)

Win: Justice

Win: I may be getting a TV stand to replace my current one – which will free up my current one to serve as a wicked handy shelf under my desk! Woot!

Also, I expedited an adapter for my snazzy, but older, extra monitor so I can plug it into my laptop and have two screens. Anyone who has ever had this will tell you how awesome it is. It is sweeeeet. Also, I expedited it because I could. Yes, I actually paid more in shipping than for the actual dinglehopper, but that’s ’cause it was all paid for by a forgotten gift card. Yay!

They don’t really look all that different from any other doors, at any other hospital. Big glass pieces, pull them open. Get in from the wind.

It’s the entering through the doors that’s different. Those doors. I’ve entered that hospital a thousand times, but never there. It’s the damn stigma. It’s that word, “cancer.” Knowing the difference between what society has given us, cancer in all its terror, the scary, violent images (like “battling”) associated with it, and what my dad is going through, which has a high rate of survival and, as I’ve heard more times than I ever cared for, “it’s the best kind to get.” Well, thanks. How reassuring. Let it be known that saying to someone who has or is close to someone else who has prostate cancer, “well, that’s the best kind to get” is not helpful. And everyone says it. Please stop. Yeah, I know: you just said it’s different from cancer, that stigma. Bear with me. Life is not black and white, and it’s not easy to explain. But maybe, if you’re here, you understand.

Dad went first, for his appointment, and my brother, me, and my boyfriend followed for support. I got quiet, I was quiet all day. We found the right reception desk, and dropped him off. Then we grabbed breakfast and waited. There’s a nice, cheap cafeteria with a chipper cashier. None of us were all that hungry, but we had a few eggs, sausages, homefries. Bacon. Tea. We finished and walked back to the waiting room. There was a bookshelf of resources, for those going through cancer and their families. I hesitated, considered getting one down, but followed my brother and boyfriend to a little couch and chair area. After all, what would they be besides gushy repetitions of things I already knew, or the seven stages of grief: I needed neither. They’d either annoy me or put me into such a state of nervousness and fear that I’d be useless through the whole ordeal. Well, at least this one. Taking my dad to an appointment – one of several, one I can make it to. Not to mention the 63 consecutive radiation therapy sessions this summer. But I will be here, working my butt off, since that’s how my business must run its summer. Perhaps I can skip up for a weekend. I feel even more useless being far away. But what can I do, really? I can’t fight for him, stand in for him. I watch. I hug. I call. Mostly, I listen.

I sat down next to my brother on the couch and picked up The New Yorker, some old edition. I scanned it for the poems, a short story. Just waiting. My brother and I exchanged a few quiet words. I glanced up, often, at either of the hallways my dad was likely to come out of. When he did, we got up. Chris gave him a hug, told me to do the same. But a man sitting down caught sight of my dad’s jacket.

“Are you a firefighter, sir?”

Well, there was no stopping that. Blocked by another cancer patient. He’s in for a much rougher time than my dad. After, still somewhat blocked, I went up and at least awkwardly gave my dad a pat on the back.

After a swing by a coffee shop, we headed back the way we came. Outside the doors, the ones below the big white sign: Cancer Center. Someday, this year maybe, it will be the last time he has to walk through them. He will be walking. And on his way outside. No more meds. No more treatments. Cancer-free.

And we will buy him scotch and throw a party.

OK.

Whenever I begin to pack up my things and leave my parents’ house…this is what hits me the most. Missing this, in “the big city.” Be-a-utiful. And it’s right outside.