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.

Horseshoes and Hand Grenades

Cycle 6 is looming. The first day is this Friday, the day after tomorrow. I know everyone expects me to be excited about this. It's the Last Cycle!!!! And yet. For me, it's hard not to see it as anything but the Next Cycle.

It's hard to look beyond the day spent at the Infusion Center, the bloated belly, the discomfort, the weekend spent zoned out and the week spent feeling fuzzy and shaky. Then there's Day 8. More chemo. At first, I was tempted to focus on that day. It really is the Last Day! Then I realized, it's not the end of the cycle. I still have more days that I will feel debilitated before I start a permanent upswing. I wish I knew what that trajectory will be like.

Yes, I'm glad it's the last cycle. But that's a cerebral kind of gladness, and the visceral not-gladness overshadows it.

This past weekend we substituted a metaphorical getaway for our customary end-of-cycle trip. We have subscription tickets to the Steppenwolf Theater and to the Joffrey Ballet, and we arranged for both to happen this weekend. Saturday night we saw Clybourne Park, a wonderful play that examines race relations in Chicago by portraying the interactions between buyers and sellers and neighbors of one house, first in 1959 -- when the concern is a black family moving into the white neighborhood -- and then fifty years later, after the neighborhood has declined and a white family wants to raze the house and build something bigger and newer, which the community resents. Sunday afternoon, we saw a sparkling new production of Don Quixote. With brand-new choreography, a streamlined story, lovely costumes and proficient -- sometimes bravura -- dancing, it was a great production.

It also completely wore me out. I stumbled through the door and headed for the couch, while David cut up some watermelon -- my "drink" of choice when I'm really exhausted -- and then fetched my comfortable clothes. I dozed for the rest of the evening.

Do you know that feeling of aching emptiness when you are really short on sleep? Like after you've had several nights with just a couple of hours sleep, or maybe one all-nighter? Yeah, that's what I feel like. Only I get there after just a little exertion, and regardless of how much sleep I had the night before. It can come on very suddenly -- sometimes just because I've made and eaten breakfast, or spent a pleasant morning visiting with a friend. Yesterday I went for my bridge-to-bridge, lakefront, two-mile walk. I took it at a moderate pace (23-minute miles) and never felt challenged or worn out. (It was, by the way, absolutely gorgeous: 70 degrees, clear sky, scrubby trees by the shore all golden and green.) And when I got home? Instant depletion, that yawning emptiness, relieved only by a two-hour nap.

Bits and Pieces

• Ah, the life of leisure! Even if I don't sleep well some nights, I have the luxury of sleeping in on other days. Today I slept until 9:15 (about 10 hours), and the day before yesterday I slept until 9:45! This offsets the nights when I wake up at 3:15 and go back to sleep at 5, and get awakened by a mistakenly set alarm at 6:50.

• I have cancelled all gym workouts until chemo ends and I begin to recover from it. This pains me. I adore my trainer, if you couldn't tell already, particularly because she can tailor workouts to what I need on that day. But I just don't have the energy reserves now. Some days, just making and eating breakfast sends me back to bed for a rest. So for now, I'll continue to rely on walking for my exercise. I am excited because after two days of really horrid, cold, windy, rainy weather, we have blue skies and a pleasant chill. I am hoping to walk over to the lake, which I haven't done in a while. I doubt I should do the whole 2-mile bridge-to-bridge loop, but ... well, once I get there you never know what foolish thing I will try. At least I know where all the benches are.

• I am rethinking my habit of leaving a glass of water by the bedside. You can't see her little pink tongue, but Umbra was indeed getting a drink.

• Here are two pictures of the "new" haircut that I promised weeks ago.

• You can see from the side picture that I was getting pretty thin even three weeks ago, and it's gotten worse. This week I started to wear hats and scarves. I still feel a little self-conscious with this new style, but I'll get used to it. It helps when people like the coordinator at the blood lab -- who continues to recognize me, even thusly disguised! -- compliment me on the way I've tied my scarf. Accessorizing has never come easily to me.

• We have discovered that missing just one dose of Coumadin sends me below the "safe" level that protects against blood clots. I might have to find a reliable way to ensure I've taken my daily meds. I know that having a routine helps offset my middle-aged, chemo fogged mind, so indeed I use a day-by-day pillbox and take my meds at a regular time. But sometimes I feel ill in the morning and postpone taking meds. (No good having them come right back up again!) And if all the compartments in the pillbox are empty, who knows if you took the morning's dose and now need to refill the box, or if you meant to do that yesterday and forgot? Hmm .... Well, this is the kind of problem I work on all the time in my teaching life, so I'm sure I'll come up with a system to try.

Cycle 5 Wrap-Up

All the treatments for Cycle 5 are complete. Just two more treatments to go. I cannot express how much I am ready for this chemo stuff to be over. Have I mentioned that it sucks? It does. Both figuratively and literally. It sucks the energy right out of me.

While I was getting my Day 1 treatment, a visiting doctor from England stopped by, escorted by chemo nurse Connie. This doc was in town to learn about intraperitoneal chemo, which her practice -- and perhaps her country? -- does not yet offer. Somehow, between her somewhat desultory questioning and my tendency toward bravado, she got the impression that IP chemo was easy. Really, that's the word she used. Perhaps she was just trying to be supportive, or searching for something to say. At the time, I responded, "If this is easy, I don't want to do hard!" Later, I wrote an email to my doc for her to give to the visiting doc. I didn't want her going back to England with a false idea of how difficult this is for patients. I made two points. First, the only reason I can do the things that makes it sound 'easy', like taking long walks, is because I have the luxury of focusing pretty much exclusively on myself and my own well-being. I can do this chiefly because I have no day-to-day responsibilities for other people. I am not working, my kids are no longer at home, and we have financial resources to pay others to do some of the chores many people have to shoulder on their own. Moreover, I have a fabulous support system that starts with the ever-dependable David -- who, I think, has been waiting all our married life for me to accept his natural-born talents as a caretaker -- and extends to the many friends and family who supply meals, rides, conversation, and encouragement. The second point I made is that she was seeing me at my best, before the chemo took hold. Had she chanced to stop by my house on Day 2, she would have found me lying on the couch, inert, with my eyes closed because it simply took too much energy to process visual stimuli. On Day 3, she might have found me reading the paper, but only for the length of an article or two, and then I'd have to take a rest. No: this is not easy.

I asked my doc why the IP chemo is so much harder. (In one study, almost half of women who started this regimen completed just three or fewer of the six planned cycles. Needless to say, it pleases me that I am in the other half.) She said that the drug dosages are higher, and the drugs stay in the system longer than IV therapy. The trade-off for reduced quality of life during treatment -- and for a while after -- is a 20-25% bump to both progression-free and overall survival. Caveat: these data are for ovarian cancer patients. As far as I know, data don't exist for uterine cancer, but, as noted in my last post, my uterine cancer is acting much like an ovarian one, especially in that the metastases were scattered around the abdomen, where the residual cells left after their surgical removal are readily bathed by the IP drugs.

Of the possible side effects, most that I've experienced range from annoying to debilitating, but not of lasting concern. Fatigue wanes and waxes depending where I am in the cycle, and overall continues to increase. It's worst in the first 10 days. Unlike the earlier cycles, I'm not recovering as well after the first treatment so the second one hits me harder. Even in the second 11 days, I seldom have what I'd consider to be normal energy. Nausea is also increasing. After each treatment I take anti-nausea drugs on a prescribed schedule, and prior to this cycle I experienced few bouts of nausea. This time, I have had to take additional drugs on additional days to suppress nausea, and, lacking access to drugs, have on occasion had to use willpower to suppress the, um, bodily urges that follow nausea. My appetite remains remarkably good, except for the first two or three days of each cycle. Like fatigue, the ability to taste food wanes and waxes across each cycle. I don't think it ever gets back to normal, but that's hard to assess. Certainly, I've lost the disappointment I initially had at not being able to taste the complexities of a good recipe. My blood counts have, as expected, dropped, but never so much as to require transfusions or other blood-building treatments (beyond the scheduled injection to build up neutrophils once each cycle). Temperature regulation goes haywire following the Day 1 treatment, and for the next week I am annoyed by hot flashes that interrupt sleep as I constantly toss off the covers and then freeze. Hair continues to thin out, but, quite remarkably, has hung in there much longer than expected. With the advent of fall weather, however, I have been experiencing new sensations of cool wind blowing on my scalp.

The one side effect that is causing some concern, and that might ultimately modify or cancel my last scheduled treatment, is peripheral neuropathy: changes in the nerves that carry signals from the rest of the body to and from the brain and spinal cord. Unlike the other side effects, this one might not get better once chemo stops, so they watch it carefully. My symptoms have progressed from tingling in my feet to slight numbness in both my feet and hands. When I walk, it feels as though I am wearing extra-cushy socks. My hands feel slightly uncoordinated and weak, though luckily my right (dominant) hand is less affected. Patting the cat feels ... different. Chemo nurse Connie has me soaking my hands in hot water three times a day, while flexing and extending the fingers. I also decided this might be a good time to take up the piano again -- especially some of the scales and fingering exercises -- and to dust off pointing, flexing, and relevé exercises from ballet to remind the feet how to work well. I'm sure Connie will run me through my paces of buttoning my shirt and trying to pick up paper clips and coins before she approves me for my next treatment.

How Did We Get Here?

Probably you’d like to hear some reassuring story, such as how I haven’t seen a doctor in 20 years, and ignored really obvious symptoms until they just couldn’t be ignored anymore. You know, the kind of story that lets you say, “Thank God that will never happen to me!” Sorry, can’t oblige. The truth is, I’ve gotten pelvic exams annually – the last one was in fall 2010 – and I see my primary care doc at least every six months.

This either happened incredibly quickly or, more likely, just flew under the radar. You’ll see in a moment how elusive it was.

The first symptom I had surfaced in something like January: shoulder pain. I know, I know, everyone but me experiences shoulder pain and immediately thinks “gynecological cancer”. I’m slow that way. Actually, my trainer and I spent much of the late winter and early spring trying to decipher it. It clearly wasn’t muscular – I’ve experienced rotator cuff injuries and knew it wasn’t that – and it seemed to move around a bit, first showing up under the clavicle and then farther outboard in the region of a small joint where the collarbone and shoulder blade meet, and it was tied to breathing. Very mysterious. I tried a course of anti-inflammatory doses of ibuprofen, which helped the pain while the drugs were in my system, but didn’t make it better in a permanent sense.

By February, I was also having persistent pelvic pain. It felt kind of like a combination of menstrual cramps and ovulation. Of course, the ibuprofen I was taking for the shoulder pain also took care of the pelvic pain, so it was a little hard to pinpoint when it started. I wasn’t alarmed, though, because at my exam the previous fall, the nurse-practitioner thought she felt fibroids in my uterus, a diagnosis that was confirmed by ultrasound. The ultrasound was otherwise unremarkable. (Are you paying attention?) I assumed the fibroids were causing the pain.

Mid-March, I saw my primary care doc. She sent me for chest and shoulder xrays, and referred me to the gynecologist and the orthopedist.

Mid-April, I had my appointments with those specialists. The orthopedist chalked my shoulder pain up to moderate arthritis visible on the xray. (In the end, it would turn out to be caused by a tumor on my diaphragm.) The gynecologist gave me another pelvic exam and another ultrasound, noted nothing remarkable on either (are you still paying attention?), assured me that fibroids don’t cause pain, and suggested I return to my primary care doc to have the pain assessed. (I know, I know … I’m still pondering what to do about this.)

I should note that at the beginning of April I felt well enough to consider joining the University of Chicago team for the Corporate Challenge 5K, to be held at the end of May. At the end of April, we had a delightful weekend in DC celebrating the wedding of my nephew and his bride. This included a lovely run through upper Georgetown and around Dumbarton Oaks. All with the help of ibuprofen, of course.

The earliest I could schedule an appointment with my primary care doc was May 23. (Cautionary note: I’m quite sure if I had talked directly to my doc, I could have gotten in sooner. Moral: make noise when you believe it’s important.) In that month, things deteriorated pretty quickly. The pain increased, and generalized throughout the abdomen. I felt short of breath. I had some bloating, as evidenced by tight jeans and, later, by direct measurement. (This is another plug for working with my personal trainer, who had all these measurements on file from yearly assessments.)

My doc was able to see me a few days earlier than the scheduled appointment, after I finally sent her an email with the subject, “Going from crappy to awful.” That’s when I got the first rude shock. I decided to go ibuprofen-free for the appointment, so I could accurately report my symptoms. I had NO IDEA how much pain I’d been masking with my increasing intake of analgesics. The doc walked in, took one look at my miserable face, and asked, “WHAT is going on?” All I could say was, “I don’t know, and I’m depending on you to figure it out.”

That was Thursday, May 19. And everything kicked into high gear.

Doc sent me for a CT scan the next day. She phoned me Saturday with the results: “Multiple mesenteric soft tissue implants predominately in the right 
hemiabdomen and also extending into the pelvis. Given the patient's age and gender, a 
gynecological primary malignancy considered most likely.” In layman’s terms: metastatic tumors, most likely caused by a cancer originating in the uterus or ovaries. (Regardless of where metastases are found, the tissue reflects the cells of origin, called the primary malignancy. So, for example, a colon cancer that has metastasized to the lungs will be composed of cells from the colon, and is distinct from a lung cancer that originates in lung tissue.)

Great. Did I mention that David was in California for the week? I made rhubarb compote at 3 am while trying to parse this bombshell.

The following week was dedicated to identifying the primary malignancy. (Like the two ultrasounds, the CT scan didn’t show any terribly obvious problems with my reproductive organs.) While a gynecologic cancer was most likely, colon cancer was also possible – although I had ALSO had a clean colonoscopy last fall, but at this point who’s trusting any of those tests? – as was, in my mind at least, a recurrence of the melanoma I had several years ago.

Monday, my doc sent me for blood tests and set me up to see the gynecological oncologist the following day. Tuesday morning, the blood results came back positive for gynecological cancer, but not able to specify whether uterine or ovarian. Tuesday afternoon, the oncologist did an endometrial biopsy – a biopsy of the uterine lining. Regardless of the origin, she said, I was facing immediate surgery and chemotherapy down the road.

Thursday, my surgery got scheduled for the following Tuesday. The biopsy report came back positive for endometrial cancer. But that left a remaining mystery, because these cancers don’t typically metastasize the way mine had. Could there actually be two primary cancers, endometrial AND ovarian? Or was this one cancer, endometrial in origin, presenting weirdly?

And that’s where things lay. The whole family took off for a previously scheduled Memorial Day trip to Little Compton featuring long, contemplative walks and general gratefulness for each other’s company.

In the end, the post-surgery pathology report would confirm there was just one primary malignancy, originating in the endometrial lining of the uterus. My ovaries may have looked and felt fine, but both had been invaded by tumor cells and one had been largely replaced by tumor. Sneaky little cancer!

I think the moral here is to insist on prompt and comprehensive care when things don’t feel right. To ask questions until you are satisfied with the answers. And for doctors, to be curious and inquisitive when a patient’s symptoms just don’t square with the test results, even if those tests are “the gold standard.” I don’t know that my outcome would have changed at all had this been discovered sooner – indeed, I don’t know how much earlier it was discoverable – but I do know that several opportunities were missed to do easy and definitive tests. And of course, it would help if we had a medical system in which one could routinely see a doctor in a matter of days and not weeks.

Media Metastases, and When It's Not "Happily Ever After"

I'm sure they were there all along, but haven't we all had the experience of something that is invisible until it's salient, and then it's everywhere.  All of the sudden, there are movies about cancer (comedies, even!) and TV shows about cancer, and TV shows not about cancer with very special episodes about cancer.  All come complete with extensive ad campaigns and promotional appearances.

There are commercials for cancer treatment centers and cancer drugs.  There are heartwarming stories about people who have recovered from cancer and moved on to do remarkable things.  There are testimonials from people who are doing wonderful things in the name of someone who has or had cancer.

The NFL goes "pink" to raise breast cancer awareness (see below).

When you tell someone you're dealing with cancer in the family, nearly everyone has a story in return of their or a loved one's battle.

Were they all there before?

This past week has brought two stark reminders, however, that the disease is far more than a plot device.  It's real and not all its stories end "happily ever after."

The first, of course, is Steve Jobs.  Many, many words have been written about his passing; I needn't add to those except to say that when Leslie was headed to surgery, I bought her an iPad (identical to the one on which I'm typing this post).  Surely, Jobs had the iPad in mind long before he became ill, but he certainly helped design a device ideal for someone bed bound and with minimal energy.

Far more in my mind (though not on the cover of Time) is the death on Saturday of Paula Ford, from breast cancer.  I met Paula on the Internet, a fellow member of my online running group.

I probably didn't see her in person more than a half-dozen times - the Madison Marathon, Dances with Dirt (where she ran with the wonderfully-named team "Does My Butt Look Big From Way Back There?"), a long bike ride to celebrate another friend's 40th birthday, and a few other races (including the Chicago Marathon, which took place this year just 12 hours after her passing).

In our virtual world, though, Paula was a star.  She was brilliant - a soil (not "dirt," if you please) ecology expert with a focus on sustainable nutrition.  She could sling snark or bad jokes with the best.  She was a "Jiminy Cricket" to me on the topic of food marketing and obesity, sending me research studies and her analysis, bemoaning kids' increasingly unhealthy diets.  She was fearless -- a proud and outspoken liberal living in red America (Kansas, then Texas).

I don't usually like to use "fight" or "battle" to describe cancer treatment; it suggests that those who don't make it didn't fight hard enough.  Without question, Paula fought.  She railed against mindless "pinking" that made cancer a fashion statement (see above).  Even when her treatment options were exhausted, she spent time in her academic office, ensuring that her research programs and graduate students could go on without her.  When her systems shut down, her body went on for almost a week on sheer will (as a mutual friend put it, she was never one to leave a party early).

Paula's death would have saddened me at any time; right now, it's far too close to home.  As Leslie is fond of saying (as am I, as are all of Paula's friends, as are Apple fans, as are...), cancer sucks.  Pardon me I don't rush to the theater to laugh about it. 

Loyalty Programs

You know you are in the Frequent Blood Draw program when you walk into the very busy blood lab at the hospital clinic, and the coordinator -- who must see hundreds of people a day -- greets you by name and knows she has to search two different folders to find all of your orders. You'ld think by now I would qualify for a free cholesterol screening or something.

Don't Just Do Something...Sit There!

Friday we return to chemo, and I resume my role as chemo-sabe.  As it turns out, the job description is pretty simple - be there (and, of course, "other duties as assigned").  As easy as it is to summarize, though, it's equally hard to carry out.

On chemo Day 1, Leslie is pretty upbeat and peppy.  She's had two weeks off and, while there is a cumulative effect, she's more or less at her peak of feeling well.  She's usually got a good appetite, so part of my job is packing breakfast, lunch and snacks (it's a long day - 7:45 to about 3:30). Almost right away, though, they give her Benadryl to head off reaction to the drugs, and that puts her into a valley of grogginess that lasts about an hour.  I seek out the least disruptive place to park myself (near her head for stroking as called for) and get to work.*  I start in on my two large travel mugs of coffee.

 

Even after the grog wears off, there's not a lot we can do other than talk and read.  Having a few liters of saline and drugs pumped into your body doesn't lend itself to sitting up and playing games or going for walks (though she is on a mobile IV pole).  The lingering effects of the Benadryl make the Friday NY Times crossword and KenKen pretty challenging.  Even a massage doesn't necessarily appeal when it means lying on a tummy filled with fluids (though at the end of each treatment, she has to lie uncomfortably on each side and her stomach for 15 minutes to "marinate").

Holding hands helps.

Day 8 chemo tends to be even quieter.  A week of queasiness, plus the anxiety of willingly delivering yourself for a noxious experience, leads to most of the morning being spent under headphones, drifting on a Pandora folk stream.

Once home, I can release my inner "gofer."  I'm a putterer by nature, happiest up and about bouncing from task to task.

(Why, then, you might well ask, is our house such a mess?  I am a surface putterer: doing dishes gives me pleasure; making decisions about piles of paper provokes catatonia.  Thank you for asking, though.)

The hurt of watching your spouse - my stronger half, to be certain - in discomfort and anxiety, is offset only a tiny bit by keeping busy, fetching ginger ale and blankets, chasing away the cats, locating wayward phones, slicing melon.  I've volunteered a few times to take my turn getting the chemo, but apparently there are rules against that.

Just being there helps, but so it seems does just not being there.  Leslie nearly had to push me out of the house to spend a weekend away running my favorite crazy trail race, but when I checked in with her, she was up and about.  Sometimes - a bit counter-intuitively - the more you do for yourself, the more energy you have.

Last week, both Leslie and I woke up in the middle of the night (not uncommon these days).  I put my arm over her and she said, "just having you do that makes me feel calmer."  "Don't just do something, sit there" takes getting used to, but it's good to know it's effective caregiving.

* Work = bouncing among e-mail, Facebook, various blogs and the Friday five-star Sudoku, plus the occasional sympathy nap.

Fall in Little Compton -- Text

We did the annual Rhode Island garden wrap-up this weekend. It was much easier to do this year because there was so little to harvest. Not much got planted, nothing got tended, animals feasted, hurricanes happened, and in the end, we reaped one squash, three small sweet potatoes, and a respectable pile of Good Mother Stallard beans. Those are the ones that vine up a supporting structure. The bush beans -- the Ireland Creek Annies and the Hutterite Soup Beans -- were a dead loss. They got beaten down in the hurricane and embedded in the encroaching weeds, and rotted on the ground.

Sad to say, this is probably the last year for the garden. Successful spring planting requires good bed preparation in the fall. I usually mix in compost and then cover each bed with newspaper and straw to keep weeds from sprouting. Right now, it's hard even to locate the beds. With no regular weeding, the surrounding hayfield has exerted its dominance over the garden. Even if the beds were evident, I have had neither the energy nor the interest to do the work required.

This garden was never intended to support us through the winter. As I worked in it, though, the phrase "getting in touch with my inner pioneer" often went through my head. What would it be like to farm this land for real? What if life depended on a good harvest? This year jolted me into the realization of how slim the margin can be sometimes, how one misfortune can snowball into another, bigger one. My inner pioneer would starve this winter. Of course -- another jolt -- lacking surgery, my inner pioneer might not have lived to see the winter at all.

I learned a lot from this garden. I learned there is a season to weeds, just as there is to other plants. I learned that you can't bend nature to suit your needs. I learned that it takes a whole lot of time, energy, money, and luck to grow good vegetables. I learned respect for the people who have tried to live off this heavy, sticky soil that is rich with clay and rocks, and poor with nutrients. I learned that good gloves prevent blisters, and that ibuprofen helps you to dig one or two more beds. I learned that even though a gas tiller is noisy and not authentic, it is way more efficient than tilling by hand with a mattock, a shovel, and a spading fork. I learned that sometimes it is impossible to accomplish what you set out to do, and you just do the best you can and let the rest go.

On a different note: I am sharing the last picture because it is so darn cute. My dad has Alzheimer's, and, at 91 has trouble getting around. One of the joys of his life is visits from his great-grandson Owen, who he calls "the little guy". Today, we hoisted Owen onto Dad's walker and Dad gave him rides around the house. It was hard to tell who had more fun!

Fall In Little Compton -- Photos