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.