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!

Giving Thanks in Challenging Times

Our Black Friday has been more sky blue, evergreen and bleached grey.  We’ve barely left the windswept, lakeside home in Michigan graciously made ours for the weekend by a friend and colleague of Leslie’s.  Just now, at sunset, Leslie and I walked down the hill to the beach and to the castle that gives Castle Park (between Saugatuck and Holland) its name.

Our families are far-flung for the holiday, and with me just back from New Zealand and Leslie still gaining strength, neither of us much felt like traveling far or braving crowds.  Our wonderful friend Katie came up to Chicago from Tennessee for an extended visit, and accompanied us around the lake.

 

We did most of the prep and mise en place for our Thanksgiving dinner in Chicago, before leaving midday on the holiday (avoiding all traffic).  Our gift house has a well-equipped kitchen, so we had only to roast the turkey breasts from our "happy meat" farm, toss the sweet potato "coins" in olive oil and herbes de provence and roast them, make the mashed potatoes, heat the Kleeman-family-traditional carrot ring and stuffing, and dish out the cranberry relishes.  We did make one concession - Trader Joe box o' gravy, since we weren't sure the turkey breasts would yield enough drippings.

 

Open the wine and voila!  Thanksgiving dinner for a crowd, with only three to serve!

The traditional Thanksgiving toasts caught in the throat, just a bit.  Our annus horribilis (to quote the Queen) has been well documented in this blog, though we've written less about other family difficulties like fathers (both of ours) who suffer from deepening dementia and mothers on whose shoulders so much caregiving has fallen.  Katie has had her own challenges.

The soundtrack to Thanksgiving 2011 could easily be more Cee Lo (F*** You) than Earth Wind & Fire ("Gratitude").

Nonetheless, we found many things to be thankful for, first and foremost that Leslie is alive and doing well, thanks to the skill and care of many doctors, nurses and technicians.  From surgery to post-op setbacks to recovery and strengthening to chemo, we have been blessed with a medical staff that works and relates to one another as a team, mutually dependent and appreciative of one another's roles.  Leslie makes it a practice to learn and remember every caregiver's name, and this small gesture has meant she's recognized and treated with respect and warmth by all, even those whose daily lives are an endless stream of patients.  (I marvel, too, at Leslie's ability to be gracious and appreciative of someone who's just pumped several liters of toxic chemicals into her belly; see her posting about about what's done to you and what's done for you.)

We're thankful for our longtime friends who have rallied around us, and also that we've made so many new friends.  The house in Michigan where I'm writing this belongs to the family of a teaching colleague of Leslie's.  She only knew her in passing before this year, but over wine, barbecue and my first-ever martini with her and her husband, we've found a sympatico couple who share our preference for spur-of-the-moment get-togethers.  Friendships take on new dimensions -- among my running friends, some have shared their own stories of illness and recovery or caregiving; others - the doctors in our group - have been solicitous and generous with information.

We're fortunate, too, to have close and caring families.  I left for two weeks in New Zealand the day after Leslie's last chemo treatment; that would have been impossible, or at least uncomfortably anxious, but for Leslie's brother and sister-in-law coming to stay with her at the start, and my sister and brother-in-law visiting toward the end (with a visit to our daughter in California in the middle).  My mother and my aunt have struck up sustained and enjoyable e-mail conversations with Leslie.

We are thankful that we've raised strong and giving children, who have not complained that their mom and dad have been somewhat unavailable to parent this year.  That said, we're equally appreciative that they are open and confident enough to tell us when they do need our strength, as when Emily told Leslie at one point this summer, "I just need a mommy right now."  Both kids have found boyfriends who are rocks of support and gems of thoughtfulness.

When I first met Leslie, I used to say what I liked most about her was her ability to be equally at home in a softball uniform or an evening dress.  After the last six months, I can say that she is as graceful in extreme duress as she in in fancy dress.  I'd be lying to say "it's not fair," has never passed her lips, but I've never heard "it's too hard" or "what's the point."

Dark has fallen on Castle Park, and tonight's turkey soup is on the stove.  Katie has headed home, and -- as it's often been for the past six months -- it's just Leslie and me and a quiet house.  Here it is Black Friday, and we've bought nothing, but we have everything.

Energy Returns!

Things are definitely looking up. This is what I accomplished today:

• made cranberry sauce
• made granola
• had my blood drawn
• sent packages to the girls
• walked home from campus
• filled out online paperwork for our Christmas cruise
• made a carrot ring

Here is what I did not accomplish:

• get a good nap

Oh well; can't do everything.

The best part of the day? The delivery of scores of Happy Thanksgiving/Get Well/We Miss You cards made by my former students. I savored the individuality of each one and basked in their good wishes. There were many amazing sentiments, but one stood out for its stark honesty: "Dear Mrs. Hornig, I am a new student here so I don't know exactly what happened, but I hope you feel better from what you are suffering from, and I hope you have a nice Thanksgiving. Love, _______"

Last night was good too. It was the first Act I rehearsal for Nutcracker. Truth to tell, I wasn't sure how it would go because I've only attended two other rehearsals so far, and only danced in one of those. I was going purely on memory from prior years. And I was not certain I would hold up through an entire run-through. I did, though. And I had enough left over to step in for a missing person while the Artistic Director set some new choreography. (My alternate was dancing our shared role).

Apparently, I did hit my limit, though. My on-stage husband -- a wonderfully gentlemanly partner -- walked over and offered his arm. Obediently, I took it. And asked where we were going. He told me I had had enough for the evening, and that I was to sit down. So I did. He was right.

Feeling What We Think

For some time I've been interested in the interplay between cognition and emotion. As a teacher, I see that kids need to be, as we say in the trade, "available for learning". That means that, at a minimum, their mindset has to be open to taking in new information and working with it; they can't be distracted by emotions that are flooding their senses and using up energy. Optimally, they are motivated to engage in cognitive tasks by positive emotions. As my friend and mentor says, "People do better when they feel better."

In my personal life, I've come to believe in the ideas associated with Cognitive Behavioral Therapy. CBT is based on the idea that most behavioral and emotional reactions are learned, and, in particular, that thoughts influence feelings and behaviors as much as, or more than, external events. If a person wants to change how they feel about a situation, a useful step is to change how they think about the situation. CBT helps people achieve their own goals by showing them how to unlearn unwanted reactions, to seek and apply information that might have gone unnoticed, and to develop new, more accurate (and less upsetting) perspectives on the reality of the situation.

Why do I bring this up? Because I've been watching this play out in real time in my own life. It's kind of fascinating.

Lately, I've been falling into the mindset that "they", i.e. my medical team, are "doing" things to me -- things that are unpleasant and assaultive. In the past year I've undergone surgery and chemo, and there's radiation therapy yet to come. As a by product, I've had to start taking blood thinners. These treatments have left me debilitated and scarred and annoyed. They have wreaked havoc on my quality of life. If it weren't for "them", I'd have my old life and body back.

Ah, but that is incorrect thinking, no?

Yes, "they" are doing these things to me -- because they are trying to help me. It's important to add that piece in. They are actually doing these things for me, because I have asked them to use their expertise to treat the cancer. It's unfortunate that at this point in time the only ways "we" know how to do that involve bodily discomfort and provoke significant side effects.

Adding in this piece of information significantly changes how I feel about everything. When "they" are doing this to me, I'm inclined to rage. When I remember their motivation, and reflect that science has only taken us so far, I'm calmer and more accepting. I might yearn for it to be otherwise, but I'm not angry or irritated or annoyed. Frankly, it feels a lot better this way. Life is too short to spend it feeling upset and stressed.

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Tooth update: The oral surgeon eased it out Friday. As often happens, the administration of the local anesthetic was the most painful part. I didn't even know when the tooth came out! Since then it has behaved nicely, and doesn't hurt at all now.

Life After Chemo

I left you hanging, along with my loose tooth. Sorry about that.

I had a terrific time with Emily in Claremont. The weather was a bit chilly, so no lounging out by the pool as I'd hoped. We did get in some hot tub time. Mostly, we just hung out. Emily and her boyfriend Joey were great about meeting my needs, from meeting me at the airport -- exhausted after my dental adventures -- and making do with not-very-good Thai takeout to studying quietly while I took my daily nap. (I made up for the takeout with better dinners out on subsequent nights.) Emily was particularly patient during the lost-phone episode, about which I needn't tell you more than it had fallen in the parking lot at Macy's and was recovered about an hour later from the department nearest to where my car was parked, but only after we'd called it multiple times and driven around to some other sites I'd visited.

One of the highlights of the trip was watching Emily rehearse her dancers in a piece she has choreographed for the fall show. I loved her sense of confidence in working with them, and with the accompanist. The rehearsal had a good flow to it, Emily knew what she wanted everyone to accomplish at each moment, and when moves didn't work well she listened to the dancers' suggestions and made adjustments. I really like the piece, in which four couples are negotiating their relationships -- some gay, some straight, some evolving, some deteriorating.

I'm back in Chicago now. My fuzzy-headed fatigue reminds me that technically I am just today finishing the last cycle of chemo. I don't actually expect everything to magically get better tomorrow, when chemo is officially over, but I certainly will celebrate not getting another dose! Instead I will get the remainder of my broken tooth pulled. Much more fun will be the evening trip to see my nephew Gaby in the musical RENT at Northwestern University!

It's Always Something

Yesterday afternoon I was enjoying a snack of cashews and M&Ms when -- CRRAACCKK -- something felt distinctly not right in the left upper quadrant of my mouth. Things hurt. Things were moving that normally stay still. Things hurt when things moved.

I thought I had dislodged a crown. And, by the way, did I mention that I'm flying out to LA this afternoon to see Emily?

An emergency call to the dentist secured a spot first thing this morning. By the time I arrive there, it's clear that this is more than just a loose crown. My evidence: the little piece of tooth I spit out after brushing my teeth, and the curious gap my tongue keeps probing,

My dentist takes a look. I am not heartened by his doleful look and his assessment: "Oh, this is bad. Very, very bad." One of my bicuspids has split in two.

The tooth is not salvageable. The options are: pull the whole tooth; pull the piece that is loosest and put in a temporary filling; try to stabilize the whole mess with glue until it can be properly dealt with at a later date -- a thoroughly unorthodox procedure. The dentist takes a long time mulling these options. It is clear he doesn't like any of them.

Complicating the decision is the fact that I take a blood thinner. Tooth extraction tends toward the bloody. He doesn't much like doing extractions himself anyway. But he's not sure how far down the loose piece has broken, and how easily it can be extracted on its own, and what kind of bleeding will result even from that.

Initially, he opts to try glue. And immediately discards the idea when he realizes that, as much as he'd like it to work, it just won't. So he numbs me up, grabs the loose piece with his pliers (probably there's a more precise dental tool name), and yanks. Once, twice, three times. It finally yields. He clamps a piece of gauze in the wound and has me bite down on it for many, many, many minutes until a clot forms. All is good. He puts in some temporary filling goop, hands me a prescription for an antibiotic and a referral to the oral surgeon to complete the extraction when I return from LA, and sends me on my way.

This is what cancer will do to your sense of perspective: it makes everything else seem small. The whole time the dentist is wringing his hands and telling me how bad it is and warning me that I'm going to lose this tooth, I'm thinking . . . "It's just a tooth. No biggie." This revised sense of perspective is actually pretty useful for stress reduction. Things that used to make me anxious just roll right off now.

What a Long Strange Drip It's Been

Apologies for not posting in the past few days. Partly, this cycle has felt particularly brutal and I haven't had much energy until recently, and partly, every time I contemplated what I wanted to show and say I experienced what we might call acute paroxysmal nausea. That is, I had the immediate urge to vomit, and sometimes did. Even while on heavy-duty anti-nausea meds.

It has truly been a long, strange drip. Remember back to last July, when I was perky and everything about chemo seemed fresh and new? Man, that was a long time ago. What a neophyte I was!

This past Friday, on the very last day of treatment, did I celebrate? Did I joke with my nurse? Was I lighthearted and excited? Nope. I answered all of Marissa's standard questions (What meds have you taken today? How's your energy? Any pain? Do you have diarrhea or constipation? When was your last bowel movement? Any nausea? Numbness or tingling in your hands or feet? etc).

And then I did this.

I dropped off immediately, and did not wake up until it was time to rock 'n' roll, i.e. spend 15 minutes on each side, front, and back to distribute the chemicals. I wasn't aware of Marissa attaching any drips to my catheter; I wasn't aware of her changing my dressing; I wasn't aware of her disconnecting the drips. I wasn't aware of anything.

I marvel sometimes at the body and mind's ability to protect themselves. Feeling overwhelmed? Just shut down. Shut everything out.

This is what was flowing in while I was asleep:

But now it's well and truly over. How do I know? Because ... the catheter going into my belly is gone!!!!!!!!! It got pulled on Wednesday. And I do mean pulled. Tugged. Yanked. What a strange feeling! And yes, kind of painful, but completely tolerable. To my surprise, there's almost no wound; the skin surrounding the tube closed up immediately. No care is required. I can shower and bathe and swim at whim. Ahhhhh. The best part is, I never, ever, ever have to do this kind of chemo again.

Hip Hip Hooray!

DONE!!!! Cue the fireworks!

"Keep spirits up. Keep breakfast down."

That was the message David emailed me this morning. Yes, that most
iconic of chemo side-effects -- nausea -- has arrived. Last cycle it
showed itself in the need to take anti-nausea meds for a few extra
days after treatment. This cycle, the meds have failed to control it
fully.

Yeccchhh.

I am eating small amounts of easily digestible foods. Drinking ginger
ale. Taking meds three times a day instead of two (with chemo nurse
Connie's blessing). Using Edy's Fruit Bars as additional sources of
hydration (very refreshing!).

The prevailing theory is that my body (or mind) has finally let down
its guard, now that the end is in sight. I've heard this idea
independently from three very smart people, so I think it's a good
one. It explains also why this last cycle has felt so debilitating in
general. It's not exactly that I've used up all my energy -- although
it feels that way -- but that the finish line is there, just ahead of
me, and I'm going to get there anyway, so the urge is just to slow
down and walk.

As I type those words, I think of races I've run, particularly my
first 5K in modern memory. David sacrificed his own chance at an
age-group medal to run with me, encourage me, and be my tactician.
The last bit of the race was around a field, with the finish line
tantalizingly visible the whole time. I felt totally spent, but
somehow I found the energy to kick it into a higher gear and finish
with a small burst of speed.

Think I'm gonna try to do that now, too.

Thanks for Holding Us In the Light / Our Night of Hard Knocks

Leslie and I want to start this posting with thanks to so many friends who called or wrote this past week with messages of encouragement as we entered the final cycle of chemo.

When we’ve written about the few good things that have emerged from this difficult experience, we’ve usually focused on our embracing community of friends and colleagues.  Inseparable from that, however, has been Leslie’s and my growing realization that we can, indeed, feel the buoyant waves of that community’s thoughts and prayers.  As children of scientists and a journalist, we can at times have doubts about that which can’t be seen or proven; your constant love and cheerleading (not to mention soup, chili, wine and more!) erode our skepticism and propel us forward.

Your “holding us in the light” (as the Quakers say) was indispensable yesterday.

Leslie has written here about the specter of the unknown; however (and with no hat tip at all to Donald Rumsfeld), sometimes the known is equally daunting.  Leslie walks out the door each week (i.e., I have yet to have to carry or drag her) to deliver herself to chemo sessions she knows will be uncomfortable, painful and debilitating.  Since she doesn’t like the word “heroic,” in the car yesterday morning we coined the term “braverageous” – a little bit “brave,” a little bit “courageous”…with perhaps a soupçon of “outrageous” in the olio.

Ironically, yesterday’s Day One of Cycle Six was the most challenging yet for Leslie.  As soon as we arrived at the lab, she lay on the bed unable to control her anxieties; she was a bit teary, her legs were shaking and just looking at the (individually and collectively wonderful) chemo nurses made her feel sick.  She added an anti-anxiety pill to her pre-treatment cocktail, and quickly dropped off to sleep.  This is quite unusual; she is generally made groggy by the Benadryl given to protect against allergic reaction to the Taxol, but seldom really sleeps.  Her loud snoring confirmed that she was, indeed, out for almost three hours.

The nap revived Leslie’s spirits, and she was upbeat for the remainder of the treatment – visiting with a friend, joking with her supervising nurse, and eating a healthy portion of Indian food for lunch.  As she finished, she celebrated that she never, ever has to go through a Day One (Taxol and Cisplatin, intravenous and intraperitoneal) again.

Once home, we passed a quiet afternoon working, reading and napping.  We watched the World Series Game 7, then retired…and that’s when the night’s adventure began.

I was asleep but Leslie wasn’t when, around 11:15, someone began banging on our front door.  This wasn’t knocking, but banging and kicking and, after almost 10 minutes, adding the doorbell (insert Christopher Walken saying, “more doorbell”).  Leslie (braver or more foolish than me) raised our bedroom window and saw a young woman, in a dress meant for weather 40 degrees warmer than last night’s near freeze, tottering on under-the-influence-of-something legs at our door.  Leslie called out to ask what she wanted, and the only word she said was, “Open.”

At that point, we dialed 911 and the Chicago police showed up in minutes.  They very gently (kudos to them) questioned the woman about where she thought she was and where she wanted to be.  They talked for about 10 minutes, trying to get a coherent answer to their questions and to examine her ID.  When the University of Chicago police joined the group, they established that she was a student, and coaxed her into the UC squad car.  We called out thanks to the police and went back to sleep (myself faster than Leslie).

I’ve had this odd feeling all day that the young woman will show up at our doorstep to apologize; Leslie believes, far more probably, that she couldn’t find her way back here to save her life.  Though, perhaps, some day she’ll be walking down our street and wonder why that one house looks so oddly familiar.

December, Normal and Nutty

In our dance-oriented household, December means Nutcracker. The girls, of course, have danced in one or another production from the time they were quite young. David and I started somewhat later in life.

Yes, for something like a decade, we have been adults in the party scene for our local ballet studio's production. (There is a lovely picture of Emily dancing the Arabian variation at that link.) David originated our school's Drosselmeyer, the mysterious and magical uncle. I progressed through the ranks, from party guest to Clara's mother. Doing this annual bit of community theater is something we both very much enjoy, even though the girls are no longer involved.

This year has been something of a question mark for me. Would the Artistic Director want me to dance? Would I have the energy to rehearse and physical ability to perform?

Short answer: we're going to try. Through the wonderfully good graces of both the AD and my surgeon/oncologist -- two species not always known for their ability to take the personal needs of individuals into account -- I am "rehearsing" the role and hope to dance in one or two of the four performances Dec. 9-11.

"Rehearsing" is in quotes because my chemo treatments prevent me from taking part in most rehearsals right now. Some I can attend and do a little dancing -- but have to sit down after a couple of energetic polkas -- and some I can attend and watch, and some I have to miss altogether. Luckily, the role is very familiar to me, so I think I'll get by with jumping in more completely at a later date. And because there is an alternate learning the role, the other "party guests" don't depend on me to be there for spacing and cues. (The alternate is also a safety valve, in case I don't recuperate as fast as hoped and can't perform in the end.)

I'm really very grateful for the support shown me by the AD and my doc. The AD began asking last summer if I'd be back for Nutcracker, and didn't flinch when I reminded her I'd likely be bald and would miss many rehearsals. Her repeated answer was, "We can work with that." My doc injected some necessary realism by nixing the idea of dancing all four performances, but didn't rule out one or two -- proposed the idea, even. I didn't even have to sell the AD on that idea; she came up with it independently after I tried to gracefully bow out on doctor's orders!

I suppose this whole thing might look foolish, but for me it's an attempt to re-establish normalcy to my life. This is what we do in the fall: we learn, we rehearse, and, ultimately, we perform. There's a party, we dance, we make merry, we watch Drosselmeyer's magical dolls, Fritz is naughty, Clara is adorable, the Nutcracker breaks, we wave it off and dance some more. It has always been thus. This year should be no exception.

In the seemingly never-ending blessings of humankind's generosity to me, a friend is sewing me a new gown to honor this occasion. Well, okay, she's doing it also because I've lost weight post-surgery and -chemo, and I don't fit last year's costume. She brought over patterns and fabric swatches, and we had fun dreaming about how gorgeous I will look decked out in her finery.