Tag Archives: living with lung cancer

A beautiful weekend away from it all

Sometimes you just need to get away and away is absolutely where I got to last weekend. Forever friend Melinda and I decamped to NYC for thirty-six hours of culture and inspiration. After checking into our amazing hotel in Times Square (The Chatwal–I really could have hung out in the sparkly bathroom with the heated toilet seat a little while longer), we took a cab over to the Metropolitan Opera House, where we had tickets for Donizetti’s L’Elisir D’Amore. Our evening began with dinner at The Grand Tier Restaurant with seats overlooking the winding staircase so that we could people watch to our heart’s content. Our meals were delicious; grilled octopus and duck liver mousse followed by halibut and salmon with trout roe.

First two courses finished and dessert ordered, we found our seats just before the curtain rose. I was entranced—a visual and auditory spectacle all the way around. At the intermission we returned to the Grand Tier for espressos and a baked alaska and chocolate mousse. Twenty minutes later we were back in our seats for the final acts. One of my personal highlights was the tremendous applause received by the tenor playing Nemorino, Mario Chang, at the conclusion of ‘una furtive lagrima‘ (follow link for bizarre/humorous interpretation), the romanza from act 2, scene 8. The following morning we learned that this had been Mario Chang’s premier as Nemorino and that he hails from Guatemala. At any rate, he was much moved by the applause and cheers (bravo!) and it felt like both a personal triumph (for Mario) and one for those of us in the audience as well—that we had been witness to such artistry.

Anyway, all good operas must come to an end and we finished our evening with a quick nightcap (still of the non-alcoholic variety pour moi) in the bar back at the hotel. I was sorry that it was so late as I could have spent several hours reading magazines while snuggled under the voluminous duvet. However, we had more scheduled fun early the next morning.

And that would be….backstage at the Met! What a way to round out my first opera experience. Going backstage was sort of like seeing the inner workings of an automaton. The sheer magnitude of it all! A highly recommended addition to a live performance.

Post tour we caught yet another cab over to the Guggenheim where we had lunch before taking in the Peter Fischli/David Weiss show, ‘How to Work Better.’ Whimsical but also provocative, this collaboration of two Swiss artists is absolutely delightful. It was a bonus when a side gallery revealed several paintings from one of my personal favorites, Kandinsky.

Have I mentioned that this was my first opera ever? And a very special gift from Melinda and her husband Kihan. Also, I had not been in an art museum in New York City since my teens, a situation that required rectifying. Thank you dear friends–it was oh so fun and absolutely magical!

 

By its cover

2016 began rather inauspiciously at a Great Gatsby themed New Year’s Ball. Held in a gorgeous old church, the night looked very promising. However the venue was poorly heat, the drinks insipid and the music far too loud. My grumpiness just made me feel old–not how I wanted to ring in a new year. We left a few minutes prior to midnight and when home I collapsed on the couch with my laptop. I intended to check a few emails before heading to bed but somehow got sucked into a site with before and after plastic surgery photos. Before too long I was looking at photos of Courtney Love. From bad to worse!

Fortunately I had some solid plans for the following day as I was preparing a meal for seven close friends. I’m still a little rusty when it comes to cooking and entertaining–my time management skills are way off–but I dove right in. When it comes to socializing, dinner parties are my absolute favorite. There is something about a table that is a great equalizer as conversation seems to both flow and include all.

I received a number of wonderful gifts that evening in addition to the company of dear friends. A beautiful centerpiece, a patron saint (never can get enough of those), the promise of some art (again, never enough). And a special gift from my friends Machiko and Koichiro; wrapped in indigo cloth. Tucked inside were two little wooden boxes filled with chocolate candy made by Machiko. Underneath that was another package which when opened revealed an onionskin envelope containing some mat board that had a little window cut in the center with a red tongue of paper attached–it reminded me of the advent calendars of my youth. Koichiro instructed me to open the little window and inside was a perfect, tiny platinum print of one his extraordinary photographs. I was so touched and shared with him that just the day before I had thought to myself that one day I would own a Koichiro Kurita (he is an amazing artist collected worldwide, with a photo in the Tate Museum in London). Now my year was looking up.

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This past week I made a point of engaging in all of the activities I wish to focus on in 2016. I roasted a chicken and later made soup; today I will bake some homemade granola. I walked, read, took and edited photos. I opened an instagram account–you can find me under linnoline. I ordered some canvas as I am all set to start painting again (yes!). I wrote (Click here for my latest post for CURE), made plans to get together with some of my lung cancer peeps, and began preparation for my next advocacy venture (DC in March with the American Lung Association). I participated in open studios with my vintage clothing shop–soon I will have an instagram account for that as well. On my to do list–yoga and maybe a gym membership–I’m not going to take this cancer thing lying down.

But back to covers–a highly anticipated book is about to be released–When Breath Becomes Air by Paul Kalanithi. Dr. Kalanithi was a young neurosurgeon with a gift for words who sadly contracted lung cancer. In the months after his diagnosis he devoted a great deal of time to working on his autobiography. After Paul passed away his wife Lucy, a physician as well, helped bring his book to completion. She also penned a poignant essay about love and grief for the New York Times that brought me to my knees. It is uncommon to have the perspective of patient and physician in one telling, and although I am certain it is going to be a really difficult book to read, I plan to do so.

Keeping to myself

You know, it’s been a hell of a year. Enormous change, too much loss and an awful lot of heavy lifting—both emotionally and physically. I am stronger for it all but weary as well. Make that exhausted.

Mom’s death knocked me out of orbit more than I could have imagined—as I feel I may have lost the person who cared for me the most.

I say that in a quantitative sense: Evalynn loved her children heaps. However, from a qualitative perspective, our mother did not always love us well. Strong willed, occasionally self centered and histrionic, her affections were like a wild fire, and sometimes we got burned. Once upon a time I tried to reason with her: ‘Mom, just because you will do anything for me, it doesn’t mean you can do anything to me.’

Grieving has been complicated. I miss the hell out of her but am also tasting that bittersweet broth of relief and confusion that happens when a very passionate but emotionally destructive relationship falls out of one’s life.

Make that two relationships. David and I were a couple for over twenty-five years. There are many parallels between the bond I had with my mother and that which I shared with my husband. Duration, intensity, depth of love, degree of difficulty–but also importance.  My mother and my husband have in many ways shaped the arc of my life.

Perhaps because I am the one who moved out of our home, there are those who felt my decision to leave David was selfish. I may go into more detail at a later date but I can assure you that getting divorced was never my first choice. And under the circumstances it was and is hardly easy. Again, a conversation for another day.

I realize most of you come to this blog to read about lung cancer, and that some of you have been on pins and needles as to what is going on with my lung cancer. I am feeling well—unexpectedly well—and I am also acutely embarrassed and even ashamed that I have not shared that update with you sooner. However, my illness has not been foremost in my mind these days.

There is an op ed piece in the New York Times this morning, The Problem With Collective Grief. In reference to the response of the Dutch public to tragedy, it struck a personal cord with me:

“The sad thing about mourning is that it really is quite unshareable, that it involves an extremely individual emotion. People have the right not to show their emotions and not to share them, even when it comes to soccer and calamity.”

And then this:

“…that we are often indifferent, that we are busy enough as it is trying to provide emotional succor for those closest to us, and often don’t even succeed in doing that, seems to me not so much a sign of our inhumanity, but of our humanity. Were we to actually allow the world’s suffering to sink in, we would quickly become psychiatric cases…”

I share these observations with you because they help explain my own emotional state. I’ve been grieving one very important relationship only to suddenly have another come to an end. And because life doesn’t hold still, I’ve attempted to maintain some semblance of order and sanity, all while starting a clinical trial, working on a fairly contentious divorce, attending to my children’s needs, worrying about my financial future and contending with the side effects of treatment. I’ve hit most of the high notes, but it’s been a bit hit and miss when it comes to communication. At least one friend has jumped ship and others may follow suit. I’m saddened by this inattention on my part—but it’s been all I could do to take care of my own.

Last week Peter got his driver’s license and the two of us have been busy painting walls and moving vintage clothing into my new studio space. Yesterday I had the Moh’s surgery for the basal cell on my shin. There will be a memorial for Mom in Fort Collins on Saturday and Peter and I will be driving to Colorado. We were to leave early this morning but I just couldn’t get it together in time.

It’s a good thing sometimes; pushing pause. An extra day gave me that space I needed to finally get this blog written.

We will hit the road first thing tomorrow, with Peter doing his fair share of driving. Should be a fine mother/son adventure.

Thought bubble: stuff on my mind

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I’ve got a lot of catching up to do and the longer I wait, the more daunting the task becomes. As my one and only resolution for this year is to not procrastinate (an utterly self defeating behavior), I best get started.

Oh, man. Where though, how? Maybe with the fact that my sister Binky pointed out to me that this is the first time in my entire life that I have lived alone. I’ve always had parents, brothers and sisters, roommates, partners or even my own small children as a hedge between me and loneliness. Now, it’s me, myself and I.

Fortunately, there have been only a handful of days where my newly solitary lifestyle has felt like a negative. For the most part, I am reveling in me-ness. But separating me from the mess; me-ness, messiness, has been quite the project.

You see, I love stuff. Books, beach glass, buttons (and that’s just some of the B’s). In my 54 years I’ve amassed a fair amount of treasure. Thank goodness I’ve moved into a space large enough to contain it all, but I also need to wrestle these stacks into submission. Go through it all, assess what I really want/need, and then find good homes for the rest.

A peaceful environment is enormously important to my sense of well-being. My life has been disordered for some months now, and some healthy routines have fallen by the wayside. Eating well, exercise (yoga!), catching up on email and yes, writing. However, I’ve got to stop using the chaos (however compelling) as an excuse.

It’s been far too long, and I apologize. To you, and to myself. This blog is enormously important to me, and the ability to maintain it a privilege that I never wish to take for granted. Me, myself and I; we are honored to be able to share our life with you. Even the messy parts.

Sharing on

Publishing will share in one place.(change)

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The nature of things

In the midst of all the hectic goings-on, I’ve still found time to marvel at the natural world. Frogs, newts and salamanders, who would love to share our pool but alas, the chlorine is not their friend. A fat garden spider whose neck-high web I inadvertently walked into (like a ligature!), inspiring him/her into defensive mode.

One morning, a delicate mushroom suddenly sprouted in a potted plant and which resembled nothing so much as a paper parasol. While on a walk, a dragon fly lying stunned in the road. Once home, I lay it in a bowl on the porch. The next morning the dragon fly was not there; I soon located it clinging to the inside of the screen and looking quite revived. Taken out of doors, it immediately flew up and away.

At first light, I am often awakened by the song of a robin who has roosted on the same branch outside my bedroom for three summers now and who favors an early morning wake-up call (4:30 am). We have several apple trees—presently bursting with fruit and filled with various tribes of song birds gleaning in a ‘mixed species foraging flock‘. The season’s last butterflies crowd those bushes that are yet in bloom and the cadence of the katydids has slowed considerably with the onset of cooler nights.

Back in June, a smallish snapping turtle spent an entire day depositing eggs at the edge of our yard in a decidedly haphazard pattern; we decided it was her first go at motherhood. Several days ago, David spotted a hatchling and now there are several little turtle-shaped slots in the lawn.

The wild grasses have gone to seed; beautiful swaths of yellow green, mauve and champagne colored froth lining the sides of the road. And now that the temperature has dropped into the forties at night, some of the leaves are beginning to turn as well. Goodbye summer, hello autumn.

A little housekeeping…(which, as a title for a blog, is equivalent to naming a dog Buddy)

I attend both meetings and conferences infrequently enough that I still get a kick out of what is most certainly ho-hum to the regulars. Such as, starting off a presentation with ‘first a little housekeeping’; which, according to cheesycorporatelingo.com means:  (1).  Something that needs to be done that absolutely no one cares about.

My own observation is that it can also function as an excuse of sorts; a preamble to this should have all been taken care of earlier but it wasn’t so now that we’re all assembled, time to tidy up.

When it comes to blogging, for the last couple of weeks I have been perfecting the art of procrastination and have produced only radio silence (Joan, thanks for delicately pointing that out while also checking up on me). I also started drinking again. Not heavily, but after a year and a half of total abstinence, I’ve been having a bit of a party. Or, as I said to my editor at Everydayhealth.com a little over a week ago,  ‘a good glass of wine got between me and my stated deadline.’

The combination of lack of motivation post happy hour and puffy eyes in the morning shall keep me from going on any major benders. And, alas, the return of my cough in the evening has necessitated the moving up of my next scan, so the party may be winding down.

In the meantime, the past few weeks have been blissfully busy; I have been rushing from one activity to another with all the energy that this break from treatment has afforded me. Now that I’ve gotten the (ahem) housekeeping out of the way, I shall begin to recount some of these adventures.

CHAPTER ONE:  IN WHICH I COME UP SHORT

That title was in reference to a mishap involving my wallet, but as I typed it I realized that it was actually perfect for something else:

Photo by Peter with his NEXUS

Photo by Peter with his NEXUS

I have continued to swim my (almost) daily laps, although after I made it to ninety-five lengths I had to dial it back a bit. Fifty, or a third of a mile, is much more doable. Anyway, I had just suited up (old red speedo, sunglasses, giant sun hat) and was acclimating myself to the water. Peter and his friend Miggles (that’s what they call him) were enjoying breakfast poolside. As I stood there I noticed that they were looking at me and laughing. I couldn’t understand what they found so funny (although I was afraid that if I thought long enough I might figure it out), so Peter took a picture and brought it over to show me.

Well, the lower half of my body had been optically distorted so that I now appeared to be a woman with fantastically stubby legs. It was fairly amusing, and only a tiny bit alarming when Miggles asked Peter to send him a copy. If I end up in one of those pop-up ads on the internet, they’re both in trouble.

Three!!!

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Alright, third installment of good times three days running…this one involving a trio of longtime friends!

The morning after the LIVEstrong party, my pal Melinda suggested we get together for some free performances on the Boston Common. I was more than game as long as parking was stress-free (I’m a real wuss that way). Melinda rolled right over my reticence, and we were on. Well, it’s a good thing I didn’t back out, because Melinda had a real surprise up her sleeve. She’d been conspiring with Sally, who lives in the vicinity of Washington DC; not exactly around the block. As I pulled up to the parking garage (no sweat), Melinda was waiting for me with Sally at her side. Oh joy! The only thing better would have been if Kate, Amy and Kristin had popped out of the bushes as well.

We were in the midst of that bloody heat wave, and although we enjoyed some rousing gospel sung by a choir composed of students from the Berklee College of Music, it was (to quote Cole Porter vis Ella Fitzgerald) too darn hot. So, we did the only sensible thing and retired to Charles street for lunch in the cave-like atmosphere of Figs. Afterward, with iced coffees in hand, we debated how best to spend our precious few hours together. Fortunately, Melinda has a dear family member with a lovely home a mere eight blocks from where we were debating. Better yet, knowing that I spend a lot of time in Boston, this family member had generously provided me with a key in case I ever needed a place to rest or crash. She was out of town but just a phone call away, and we received her blessing to go hang out.

It was, quite simply, air conditioned bliss. We draped ourselves over the comfortable furniture and happily chatted away until it was time to whisk Sally off to the airport. I love my friends!!! All of them!!!