Freewheeling Past the Graveyard

(My favorite film critic these days is the very wonderful Mark Kermode, who provides weekly radio commentary which the BBC (Auntie Beeb) kindly provides to deadbeats like me around the world. From Kermode, I have relearned a very useful and British expression. Forgive the liberal use of it in this post. It's a word my family encourages because it's printable and they feel I need to move on from former life as a sailor.)

Anyway, my Friday started well. I had my plans for the day, well, planned. I'd go pick up a heart monitor at Freewheeling Bikes; then I'd head back to the "Wee Flat Across from My Old House" and once there put some beef tips on the stove for the evening pasta. Then I'd work on my blog. Then I'd pick up the kid, then I'd knit a bit while watching polygamous Mormons on Big Love (I'd do anything -- anything but move to Utah -- to have fantasy neighbors like these living across the street!). After that, I'd play Scramble, this mind-suckingly addictive game on my IPhone. For an hour tops. Really. Just one hour.

Well, I did make it to Freewheeling. And they did have the Sigma chest strap I'd ordered (don't buy Polar heart monitors; they're pants.) I'd not been in the shop but a minute when in walked the new owners of my old house. The male half, William, is an avid cyclist and he was apparently picking up gear. He was also meeting, for the first time, the female half of a couple who once owned Freewheeling (she still runs the place), and who, once upon a time, also owned the very house that I just sold, that William and his wife just bought.

So, three different parties, same interest in bikes, same house. Nope, none of us heard of the house through mutual cycling friends or even knew each other existed. And not only is there the spooky bike connection, there is also the spooky ethnic connection. My husband is a British ex-pat, and William is a British ex-pat. And as soon as Ms Freewheeling opened her mouth, I had a pretty good idea that she, too, was from the land of great beer (Belgian beer, and all lager in fact, is total pants). And it turned out, upon questioning, that she was from, you guessed it, England. More exactly, she's from Suffolk, a fine county, flattish and good for cycling.

Happy occasion you'd think, no? But I had to suppress a few tears and quell a sense of dread. The tears came from just realizing again that I can't go home. And the dread came from a sense of being over-burdened by convergences. You see, not long after the Freewheeling couple moved away from my beloved old house, the house to which they'd added a fine garden dining room and a meditation loft we used for a kid-space, Frank, the male half of the couple, died of cancer. That's some dozen years ago, now.

We all know I don't believe in signs or portents or any mystical thing. What gripped my heart on this occasion was simple dread. How capricious a universe it must be to send me to a store at just the moment in time where I'd run into the past and present owners of the house I'm trying not to miss. It felt like lightning striking.

And doesn't it always strike twice? Is this just a prologue for the next strike? These occasional jolts of dread, this anxiety that lightning is always just biding its time, gathering itself into a mighty ball, will it ever go away? I realize I should take great confidence from the fact that my prognosis is good, that I have a 95% chance of not having my cancer recur. But, hey, I had a 90% chance of not getting cancer in the first place, but here I am. Numbers aren't quite the comfort they once were.

So I came back to the Wee Flat and rat-holed. I tinkered with my laptop for hours for no good purpose. It appears I can have DVD playback or non-jerky ITunes downloads, but not both. Or I can take the damn laptop to the shop after all. This conclusion should not have taken me hours to come to. Of course, I wasn't just tinkering while I tried one software module after another. Oh, no. During every gap of ten seconds or more, I played Scramble again and again, my score dropping with every round. I had to recharge my IPhone three times.

I can't handle the game and I can't leave it alone. And my highest score is complete pants.

Going Fetal

My mom has a serious love for this economic crisis. As she sees it, her kids have spent like sailors instead of living like the virtuous sodbusters she knew in her own youth. And she’s ready, so ready, for “the good Lord” (in whom, it must be noted, she does not really believe) to show her kids and the rest of their wastrel generation that Paybacks are Hell. No more lattes. No more organic beef. It’s time to load up the wagon with Grandma in the back. If we git hungry, by golly we can eat one of the dogs. And maybe soap’ll go back to being a nickel a bar.

So at least there’s one American out there who is having a ball.

My blithe heart, on the other hand, has pretty much collapsed under the weight of Cancer Anger. The anger appeared suddenly when my oncologist cleared up a little misunderstanding. When, a few weeks ago, she said that chemo was a definite, should I be positive for a particular marker, she didn’t mean to imply that there would definitely be no chemo if the reverse were the case. When I got the negative report, I clicked my heels in the air and got back to the business of life. The only niggling worry was the way my oncologist sounded when she left the message about the HER-2 report on the phone. She didn’t sound happy.

By the time I walked into her office, I was half expecting her to say what she did say. “Your case is still under review”.

A few days later, I met with my radiation oncologist. I knew he’d be the one to tell me what the docs at the tumor board had decided. I could hear him out in the hall, talking about me. He was referring to his colleagues as “mental masturbators”. He swept into the office, sat down and drew a breath. I drew a breath, awaiting their decision. And here it came: LET’S RUN ANOTHER TEST!

Why all this ire and no decision? There is concern in the breast cancer field that low-risk cases are being over-treated. And there’s the background radiation of collegial disdain: surgeons don’t like oncologists and oncologists don’t like surgeons. Radiologists don’t like anybody. But surely, I found myself thinking, they can put their entrenched positions aside long enough to make a decision about my care. Or maybe it’s time my lead oncologist just brought the hammer down and told them what she was doing. I’ve served on committees, too, and I recognize the signs: you ask for more data because you hope it will stop the argument.

This next test is the new hotness in tumor analysis. In post-menopausal women with stage 1 disease, the Oncotype DX test has been proven the best predictor, so far, of recurrence. But the test is not binary. It has a big fat gray area. I called my primary oncologist and asked her what she would recommend if the test came back in that gray area. I didn’t like her answer at all. Unless I was solidly in the low risk range, she would recommend chemo, partly because of my pre-menopausal status (still a lot of estrogen kicking around in my body) and partly because the test itself is only verified for post-menopausal women in large, randomized trials. No oncologist expects the trials on pre-menopausal women to yield very different results, but it adds extra uncertainty.

So I’m braced for chemo, because my case has been nothing but gray areas. One pathologist grades my tumors at grade 1 and the other at grade 2. I’ve been as yet unable to determine what the recommendation would be if both pathologists agreed on grade 1. Would chemo not be recommended then? If that’s true, then why shouldn’t I just decide that Mr. Grade 1 is in the right?

Yes, I’ll be seeking a second opinion from a separate institution. Right now, I’m awash in second opinions from the same institution, with the exception of the low-scoring pathologist from the Mayo Clinic.

At a recent meeting of the newly diagnosed, I met a woman whose case was very like mine: pre-menopausal, stage 1, Estrogen positive and Her-2 negative. She had thought she was completely in the clear, when her onc decided to run the Oncotype DX test. Her score came back at the very high end of probability for recurrence. She’d tolerated the chemo well. Her hair was growing in nicely. She had emerged from the wretched Babushka Phase of treatment.

The probability of chemo has eroded whatever confidence I had in the future. I don’t think I can face wearing a scarf. Nor a head-tie, or a gimme cap, or a wooly. If I find wigs too hot and scratchy, maybe I’ll wear a burka and pretend to be a member of the Taliban. If I can stand a wig, I want a red one, so I’ll be mistaken for Nicole Kidman. I don’t want to look like what Betty Cracker described as “that crazed fetus, James Carville.”

But fetal is definitely how I feel.

And could the timing be worse? My husband works thousands of miles away. I’m getting my house ready to put on the market. That market is crappy but just buoyant enough, I’m sure, to mean that any potential buyer that does emerge will, unfailingly, want to see the house 12 hours after any infusion. After eight visits, the buyers will disappear into the night, without making an offer. Meanwhile, Jesse’s band director, a malicious sadist, will schedule even more competitions and performances, to which I will have to drive her.

It’s no good telling me not to be shy about asking for help. I don’t want to think about the help I need or who to ask for it. I want Mike here. I want him working here. I don’t want to be thinking about selling and moving or, worse still, moving and not selling. Living in a tiny rental without A/C was fine for a summer, but living in any place that’s not mine would be brutal coming on top of everything else. I could deal with any two of these problems, but not all of them at once.

So something’s got to give and I’m mulling over alternatives. I could pay my mum to stay at my house for two months and look after my kid (taking her out of school early is not an option) while I go ahead and move to Long Island. I would start treatment in LI. My mum would of course do this for free, but it would be a huge commitment of her time and she could use the cash. Also, it’s not good to over-indulge her feelings of martyrdom. In her mind, she’s already Mama Joad in the back of a broken down Model-T. Excite those longings and she’ll be underfoot forever. Paybacks really are hell in the Coldsmith family.

I could possibly delay treatment. Hell, what’s two more months? I don’t know how long the delay between radiation and chemo normally is. The way my Rad Onc talks about it, radiation is a day at the beach. He accepts that I feel tired, but feels that exhaustion is more likely a reaction to the full spectrum of what I’ve been going through.

The downside of delay is that I’d be starting treatment at what should have been a happy time. Whether it’s a spruced up house of our own or a dumpy rental, we’ll be reunited again after a year of separation. Plus, my kid will be very stressed and very needy. But just as I’ve been largely ignoring her for the last few weeks, I’ll be ignoring her again while I have chemo.

My illness has, sadly, brought out the Coldsmith in her. My dad, never sick himself until he was claimed by dementia, had little patience for the ill health of other adults (kids were and are for me too, entirely another matter). His favorite line, upon hearing that some adult close to him was ill, was, “Call me when you’re better!” And he never asked for more sympathy than he was able to give. Doubtless, his attitude made dealing with a semi-bi-polar and somewhat neurotic woman a little easier. Resist, he must have thought, or they’ll suck you in to their own bottomless despair.

My daughter, tired of my whining about all the work our house was requiring to get ready for sale, said over pizza that, “Lately, Mom, you’ve been moody and unpredictable and you haven’t smiled in weeks.”

Funny, I thought. That’s exactly what I would have said about her. “Baby, I’m just a little stressed what with the medical issues and all.”

She rolled her eyes. You could tell what she was thinking: Not the cancer card again. I thought about mentioning my terrors about the economy, because that’s her second most hated subject these days. Must be calm, I told myself.

I patted her hand, said I hoped she would forgive me.

Let me whine a bit. And please forgive.