Cancer Christmas.

Last week I finished week 10 of chemo. I was going to do 12 weeks of chemo, month off, 6 weeks of radiation, month off, then another 12 weeks of chemo, which is called a sandwich, and allegedly breaks up the misery. But chemo's going pretty easy for me (thank goodness) so I just signed up to keep going for the whole 24 weeks straight. Radiation scares me anyway so I say it can wait- I'm fixated on what it's going to do to my lungs (the right upper lobe). Probably nothing.

After all this is over, I'll be on adjuvant drugs for another 5 years. Basically, the estrogen receptors that fed my tumor need to be blocked so any future tumor will starve. Women who are still fertile take Tamoxifen, and women who are post-menopausal take an aromatase inhibitor such as Arimidex. I've been pencilled in to have my ovaries shut down, probably surgically, so I can do the aromatase inhibitor, which has preferable stats for non-recurrence. On Monday, my oncologist, who is female, older than me, has no sense of humor, yet loves Broadway and ice cream, game me some fresh info that she picked up at "the" cancer conference last week (probably Southwest Oncology Group). Apparently, the usefulness of Tamoxifen (which you can take with functioning ovaries) vs. the usefulness of aromatase inhibitors (with which you can't have functioning ovaries) is pretty negligible unless you have a specific non-functioning liver enzyme. So folks with that one liver enzyme skewed the results for everybody, and that made AI's look more effective than Tamoxifen. Point being, the argument in favor of shutting down women's ovaries so we can take AI's may be a bad argument.

For me this is a moot point, because my tumor is/was profoundly positive for estrogen receptors and not much else, which means all my body's sources of estrogen need to be minimized. Other than ovaries, fat cells are the primary generator of estrogen. This means my life literally depends on my being very lean, forever. Being of Norwegian descent, such that my body wants to store a ton of fat while I sit by the fire, knitting sweaters, waiting for the ice to melt so I can go catch more mackerel, this is a huge challenge for me. I could stand to drop plenty, and I've dropped about 10 lbs already, but emotionally it's a lot like finally getting in trouble and spanked for something I've typically gotten away with. Sigh.

I continue to be amazed at the kindness and professionalism of everybody involved in my treatment. My doctors have bit parts - they write the play, everybody else acts it out. My infusion nurses, Jo and Jackie, spend more than an hour with me each week, and they aggressively interrogate me about everything I might possibly complain about. I had a cluster of spider bites on my hip, for instance, and that got everybody milling about, making decisions, marking me with pens, with much wringing of hands. Then there's Jan, the foundation upon whom my sanity and happiness rests, who schedules me, who makes me laugh, who adopted three kids from the Ivory Coast 15 years ago, before Angelina made it cool. And Lexi, my physical therapist, who spent an hour last time just talking me through expectations, and let me interrogate her about whatever I wanted (lungs). And Sarah, my nutritionist, who figured me out immediately, spoke to me of enzymes and cofactors, and gave me the Come to Jesus /Lose Weight or Die speech. And Merisa, who usually puts the fishhook in my chest catheter on chemo Fridays, so that various folks can take things out and put things in me. Merisa and my mom and I really get into it about family history and Where Trouble is Brewing and such.

But Mom's the rockstar here. My mom, who is 74 and still works for a living, comes to all my chemo infusions and is helping me out immeasurably. All my treatment providers love her like I do. As I've probably said before, having my mom for my treatment companion instead of a husband is definitely the way to go. She will NEVER make me pay for what she's doing for me, and I don't even know anybody else who's that generous.

I had no interest in celebrating Christmas this year. And so I didn't. But I started knitting again, after four months of not wanting to, so I figure another baffling lack-of-impulse is okay to trust.

Hail the Rhoten

The smartest guy I ever worked with actually read the Economist. I loved, loved, loved working with this guy, who was just a kid back in '94, on Publisher. His name was Matt Rhoten, and he stood out from all the other ridiculously bright and variously twisted Microsoft developers. Matt used to come in my office to verify that he already knew what I thought. "Um, I need to hook up the UI on this thing, and I can either do it like this or like that." I'd say something inane, full of pretense that I had some legitimate basis to channel user preferences, and pick one of his options, hoping that being logical was close enough. Matt would nod, usually skipping the part where he said "thought so," and go back to his office and get it done in 2.4 seconds.

My job was supposed to be designing killer software experiences that would delight users, sparking their creativity, causing viral product addiction and making us 'softies even more filthy rich. The job that I chose to do was setting up management to make decisions that would have the least negative impact on Matt and "my" other developers, and when I had time, try to do stuff to keep the software usage experience from making customers cry. I'd work up the chain to get reorgs and office moves postponed when the guys had deadlines to hit. I'd make sure that whatever Office (the Borg) was doing was known and accounted for in the schedule, so that we on little Publisher wouldn't get fishpoled too often. I'd call in favors. I'd order dinner. I wanted happy devs. Especially Matt. What a superstar.

Matt knew pretty much everything relevant that I needed to get my job done. He was deeply, instantly thoughtful about possibilities. I'd need a quick answer, to something like "can that text edit be shown as it's typed?" His eyes might roll up in his head for a bit, maybe he'd run the Wheelo some, and then he'd either say "sure, no charge" or "um, not hard, are you sure that's a good idea?" or "no, we have no existing structure for that, prohibitively expensive, nondeterministic, probably NP complete, hoo boy, but let me know if it's really important." For comparison, there were some developers that would only answer such questions during an official specification review meeting with management and corporate lawyers and human resources present, or would only respond to issues logged as an official feature request in the official bug database, or would blow up, yell, and threaten to quit, or hide from me, or, most often, put up the teflon to deflect responsibility or concern. Matt made solving problems really fun.

Over the course of about 4 years on Publisher, I watched Matt grow into a true stud. Straight out of Stanford, he had long hair and weighed about 57 lbs, would wear his hair in ponytails, clearly wicked smart (and really, very kind, from the beginning), clearly new to the rites of corporate sociopathology. Towards the end of my Publisher tenure, we'd be in a large, scary, critical, hostile, super high pressure negotiation with a rogue group over whom we held almost no influence, and all I needed to happen was for Matt to open his mouth. The clouds would part, the angels would sing, hearts were at peace, we got what we came for, we won the meeting. Nothing could light a fire under my ass, everybody's ass, like Matt getting pissed off, which I think I saw twice. As with many wicked smart devs that I worked with at the 'soft, there was an inherent loneliness in all that intelligence, and with Matt, a consistent generosity and patience in communicating with well-intended pretenders like me. I was relieved and thrilled for him when I found out he was dating a wicked smart, very kind woman (whom he later married, yay!).

I put a couch in my office. Bingo. Worked on Matt like a spider's web. This was a short, white, deep and intensely comfortable thing (the couch, not Matt). It got him to hang out exactly where I needed him. Even if he fell asleep, I swear, he could still answer questions or offer opinons ("snore, ABCdupPOs, snore"). A very reassuring presence, on any terms. And frequently, he read the Economist. I could not read the Economist; I was not smart or concerned enough. It was completely beyond me.

I was going to write about something I read in the Economist last night, but it can wait. Yep, fourteen years later I'm finally enough of a grownup to not just read, not just need, but enjoy that magazine. I so rarely get nostalgic about my software career, but in this case, gratitude is due. Thanks Matt.

uh oh, I'm becoming an enthusiast

Breast cancer is not my pet issue. It's something I'm doing, sure, but my deal is HIV/TB/malaria/refugees/SGBV/FGM/other stuff you don't want me to explain. Breast cancer is high profile, and famous people get it, so I'm not terribly worried about it being funded and fair. I dislike pink. I'm ambivalent about ribbons. I already did triathlons.

But I admit that when my friend Roy gave me a well-worn bright yellow Livestrong rubber wristband to wear, mysteriously alluding to its deep and meaningful history, I took it and I've been averse to taking it off. Recently my physical therapist took it off without asking, which was completely jarring (she's very nice, grabbiness notwithstanding, plus I can move my right arm now, so that's pretty cool). Point being that now I'm a cancer-wristband type of person.

And tonight in the Miami Herald I saw something that drew my enthusiasm like only Paul Farmer or trauma surgery manuals usually can. www.mamorial.org. I've signed up to have what's left of my chest casted. I doubt they have a shortage of white womens' post-BC chests in their repertoire, but I really do think I have interesting carnage.

Definitely watch for the Mamorial in Seattle, in a few years, as a fine followup to the cadaver show Bodies.