Reflections on This Week's News

We know this week's revelation came as a shock to most of you. It did to us as well. But really, all that has changed is the timeline.

Out of respect for those who weren't ready to hear the baser details, we never put into bold black and white what we have known all along about the prognosis: the odds were stacked against me from the very beginning. Those of you curious and brave enough to look up the survival statistics discovered, as we did, that women with Stage IV endometrial cancer have an 80% chance of dying of their disease within five years of diagnosis.

One always hopes to beat the statistics, of course. "Someone has to be in that 20%" was a phrase oft uttered or heard over the last months. We would go over the reasons why it might be me: young, otherwise healthy, eat a good diet, had an extensive surgery to clear out visible and palpable disease. But the plain fact of the matter is it is far more likely one will be in the 80% than the 20%, and whatever hope lay in the gut was always tempered by the knowledge that lay in the brain. Once a scientist, always a scientist.

Since my diagnosis in May, one of the things I've been working on -- part of the healing process, if you will -- is adjusting mentally to the idea that my lifespan would likely be measured not in decades, but in years. In retrospect, I realize that I focused on the most hopeful option left to me: I pretty much expected to live out those five years before succumbing. After doing some more reading, I don't think even that was very realistic.

At this point, years is the hopeful option, and indeed, is something we hope for.

But just in case, I'm starting the adjustment process all over again, with months as the new unit of measurement. Better to be pleasantly surprised than painfully so.

What I'm trying to say is that in a particular way, this week's news may not be as wrenching for us as it probably is for you. We had a chance to prepare for it; we have known all along it was a possibility. It just isn't what we wanted or hoped for. We really, really wanted a remission after the chemo, preferably a very long remission. But a cure? We always knew that wasn't in the cards.

We wonder now if we should have been more forthright from the beginning. Would that help you now to absorb the news? The plain bald (but getting fuzzier!) fact is that this is terribly hard news to absorb, because we just don't want it to be so.

A Little Dab'll Do Ya

For the very first time ever in my life, I spread sunscreen on my head. Weird feeling.

Not the Holiday News We Hoped to Share

David and I have been pretty silent this week because some stuff has come up that we weren't ready to talk about. Partly we wanted to get as much information as possible, and partly it was too painful to discuss.

Here's what has happened: they've found new tumor. This is of course hugely scary and discouraging just six weeks after finishing a very aggressive course of chemotherapy, which in turn followed a very extensive surgery. I've been having some pain and bowel issues, and my doc felt a tumor during an exam. PET and CT scans confirmed that there is a tumor on my colon, and suggested that others may be developing as well.

We will decide what to do about it after the holidays. The options include radiation or a clinical trial of a new drug therapy (not cytotoxic chemotherapy). Surgery has been ruled out. I will not return to work next quarter as planned.

This is a huge bummer.

David, the girls, and I leave for a five-day Caribbean cruise on Saturday. Doc has advised that we try to pack as much of this away as possible and enjoy the trip and being together. She has sanctioned liberal doses of alcohol as necessary (hah! even if I liked to drink, we are too miserly to get drunk at cruise ship prices). We will be incommunicado while on board; even though internet access can be purchased, we learned on our Galapagos trip how lovely it was to remove ourselves from the world for a bit. It seems especially useful now.

Counterintuitive Findings

Apparently, I just didn't drink enough coffee.

A research study that came out this week reports that women who drank four or more cups of coffee a day had a 25% lower risk of developing endometrial cancer compared to those who drank one cup a day or less. It had to be caffeinated coffee; neither decaf nor tea had an effect.

Who knew? I've been avoiding caffeine for years. Dang.

Gone Yesterday, Hair Today

Remember (if you are female) when you were a girl and you wanted to start shaving, and someone, probably your mom, cautioned you that if you did the hair would grow more quickly? and be darker and coarser?

It might be true after all.

At least, I can vouch for the part that shaving seems to prompt hair growth. The day after I shaved my head I ran my hand over my scalp and thought, "Weird. We must not have shaved as close as I thought." By the following day it was clear: my hair is growing back! Both David and I swear there was not a hint of it the evening we shaved me.

No one would mistake me at this point for Cousin Itt. There's just a layer of fuzz on an otherwise bald head. But it's a start!

Conventional wisdom holds that, at least at first, my hair may grow back differently from before. It might be curlier or straighter, or have a different texture or color. David is hoping for a blond afro. Me, I'm contemplating how I'd look as a redhead. Alas, the only color change that's really likely is more gray. Sigh.

Oh -- thanks to all of you who complimented my new look. It really helped me feel good! In retrospect, I wish I'd shaved sooner.

Showtime!

It's Nutcracker Weekend. Showtime!

I danced the first two shows: one on Friday for school kids, and the opening matinee yesterday. I had a blast. Everything went really well in both shows, even the grand right-and-left, which we sweat just about every time.

David (as Drosselmeyer) is the last to depart the party and say goodbye to us, the hosts. At yesterday's performance, he presented me with a rose that he magically pulled from his cape. He is so terrific! I had a fraction of a second to decide what to do: throw my arms around him and plant a big kiss on his lips, or stay in character, look delighted (I hope -- could have been a goofy openmouthed gape instead), and curtsy politely. I chose the latter, casting a long glance after him to seal the deal.

I'm told that the artistic team up in the control booth were in tears.

Not to be outdone, my stage husband -- who has been a wonderful partner for the last several years, without whom this role would not be nearly so much fun -- presented me with a bouquet during our bows and pulled me forward for a solo bow. I knew that many friends were in the audience, and I could practically feel the love.

I want to give another shout out to the wonderful friend who made my lovely gown. She put a ton of time and effort into it, and it shows. My cousin Sandy responded to a last-minute plea and whipped up the terrific matching turban.

Now for the surprise: although that was to have been my last performance for this year, the other woman dancing this role has had a work emergency come up and will not be able to dance today. So I get to do one more performance!

Hair Yesterday, Gone Today

It's done. I finally shaved my head.

I haven't said much about it recently, but my hair has been steadily falling out. And not replacing itself. The result: very, very thin -- and very unattractive -- hair.

I've been wearing hats and scarves for about six weeks, and I've gotten used to adjusting my wardrobe choices to include a matching headdress. Who knew I could accessorize? But there are challenges too. In the cold weather, a silk scarf is not sufficient warmth, yet a hat is too hot for indoors. Solution? Pull my favorite soft fleece watch cap on over the scarf when outdoors. Whatever works. (The bonus to my fleece cap is that I got it at the thrift store in Little Compton. Cheap AND full of warm memories.)

As with so many other things, David and I made this a joint project. First he cut the remaining hair short.

Then I slathered shaving cream on and we did a first pass. I did the top and sides. David did the back. Despite his fears, I was the one who drew blood. (But not a lot). We did a final close shave with a new blade.

It'll take some getting used to the new look. And if I choose not to wear a head cover, it will take some getting used to the stares that I will certainly attract. I'll need to wear earrings and/or makeup to reduce the number of times I get called "sir". While it's a bit of a shock at first, I don't think it's a bad look at all.

Settling in for the Long Term

Over the summer and fall, my life was consumed by surgery, recovery, and chemo. While there is still radiation treatment to come, in January, we are turning towards a new phase: learning to live with cancer. Which means, living with lots of uncertainty.

My daughter tells me that in high school, her college counselor's mantra was "Hope for the best; prepare for the worst." It seems like good advice.

The thing of it is, getting into the "right" college only seems like a matter of life and death. In my case, those are in fact the two extremes. Best case: the cancer could be vanquished and I could live out a natural lifespan -- which, judging from the example of my mother and two grandmothers, could extend into my 90s. Worst case: the cancer could recur and kill me relatively soon, in a couple of years.

Hoping for the best is actually a challenge for me. I'm the "glass half empty" side of our marriage. Still, it's a good thing to strive for, and David, being naturally far more optimistic than I, keeps me working toward it.

And how do you prepare for the worst? I challenge you: if someone told you today you had at most a few years to live, what would you do? How would you think? What would you feel? In truth, I don't think anyone can answer these right off the bat. Like most of life's challenges, there's a learning curve. Did you really know what puberty would be like? Your first sexual experience? Pregnancy and childbirth? No. You can imagine these things, but to truly understand them you have to experience them. Which makes preparation difficult.

Besides: the gulf between the two extremes is so broad that I'm not sure it's meaningful to focus on either one to the exclusion of the spectrum in between. At this point, though, it's all so new that the extremes are what is salient. In truth, in recent days I've been ping-ponging back and forth between them: one day being consumed with sadness and fear, and the next, feeling that all must be well since I've been a good doo-bee and endured all the tough treatments. My work for the moment is to figure out how to settle somewhere in the middle, just as my eventual fate probably will lie somewhere in between.

Recovering!

Oh, man, does it feel good!

I just returned from a 3-mile walk along the lakefront. For most of the way, I kept up a strong pace of 3.5 - 4 mph. Sunny day, calm water, ducks scootering around ... lovely. I even ran a few steps, just to beat the light. Oh, okay, and to see how it felt (good!). Frankly, I'd have liked to embed a few more runs in the walk, but Jessica (= trainer) told me sternly just to walk or bike for now, and I pay her good money for this advice so I decided I'd better listen and obey.

I had my first workout session in maybe two months yesterday. That felt good too! I've decided to call it "rehab" instead of "working out", though, because we are doing what used to be ridiculously simple exercises that now require huge concentration to get the muscles to engage. Just stuff like getting on hands and knees, then stretching one arm and the opposite leg like a bird dog and holding that position. Clearly, it will take some work to get back online physically. However, it's one of the things that will help me feel like things are back to normal, both in terms of establishing a routine and being more active.

It's amazing to me how quickly I am recovering from chemo. I am not 100% yet, but I feel basically normal. I can conceive of and carry out tasks. I can get in the car and run an errand. The best metric for how I know I'm getting better? David assigns me tasks and expects me to have accomplished them when he returns from work. Planning dinner, if not actually cooking, is back in my court now.

I really cannot express how good this feels. But you can probably imagine.

Here's one measure of how chemo messed up my body. Remember how hard it was to establish the proper dose of Coumadin? How I had to take more and more and more to get to the proper anti-clotting level (INR = 2.5)? Well, it seems that the chemo affected my body's reaction to this drug, requiring me to take a high dose. Now that chemo is over that dose is causing me to bleed too freely (INR = 3.8 for anyone who cares). So we have to dial back the Coumadin. Life is strange.

For those of you interested in catching a performance of the Hyde Park School of Dance's Nutcracker (featuring ME! okay, featuring a bunch of really cute and talented young dancers, and including some old farts like David and me), I will be dancing the role of Clara's mom in the 2 pm matinee on Saturday, Dec. 10 at Mandel Hall on the University of Chicago campus. (I will also perform in the show for school kids on Friday morning.) I think it will come off well, even though my ballet skills are rusty and I've skipped most rehearsals. Wait, that doesn't sound very enticing. How about: you will be dazzled by my radiance and obvious delight at rejoining life, not to mention the gorgeous gown and cap handcrafted especially for me by kind and caring friends and relations!