Category Archives: Living with lung cancer

Why I freaking love Facebook. And all of you.

Sometimes a girl just needs a hug.

For a laundry list of reasons, April is not my favorite month, even though my beloved youngest son was born on 4/20/97. His original due date was the 22nd, and I hoped against hope that he would choose another day to make his way into the world. The 22nd felt like a bad omen, as my stepfather had committed suicide on that date, also his 65th birthday, twelve years earlier.

And then, of course, I was diagnosed with lung cancer in April, further un-endearing me to the fourth month.

However, I can’t blame everything on April as the shit hit the fan in late March, when I got a text message from my oldest son asking if I was awake yet at 7 am in the morning, 5 am his time.

Never a good thing—an early morning text. I called him immediately and his first words were, ‘Mom, I’m in the hospital but I’m alright.’

Barely. The previous afternoon he’d been cleaning beakers out behind his lab (he works in the legal cannabis industry) and one of them had exploded. The resulting shrapnel had severed several arteries in his neck. His quick thinking coworker dialed 911 and the strippers next door who were sunning themselves (can’t make this stuff up) came running with towels to tourniquet his neck, which was gushing blood like the stuff of horror films.

He was rushed by ambulance to the ER and into emergency surgery. A salivary gland and a nerve had also been severed, he lost so much blood he required transfusions and they told him he missed his carotid artery by millimeters.

A mother’s worst nightmare.

I came down with the flu and then pneumonia shortly thereafter–the stress/illness link undeniable.

Then a week ago we experienced yet another family crisis. Like much of the tough stuff in my life, this one’s going to need to remain private, but I am currently in the midst of one of the most challenging times I’ve ever experienced. And that’s saying something.

About that hug.

Three days ago I posted this on my Facebook feed:

It’s been a hard week in a hard month. I am in need of a giant group hug.

No details, just the ask. And they started pouring in. The likes and the loves (137 of them to date) and an additional 135 personalized hugs–many of them from people who were probably in need of a hug themselves (and that’s the beauty of a group hug–it hugs back).

My virtual community was there for me; all I had to do was ask. And of course a handful of people contacted me privately to ask what was up as well.

I understand that some people feel social media is taking something away from the way we interact with each other but I absolutely disagree. Facebook is a tool, and if you use it with the understanding that it will never replace real interactions, it has the potential to enhance your emotional life. Sure, there are times where I log on while I’m sitting in the waiting room at MGH only to see someone’s photos from say, Paris, and I may feel a momentary twinge of envy. But that’s life. Whether I see the photos or not, you’re in Paris, and I’m still in my waiting room. Get over it.

Mostly I think of Facebook as a big giant bulletin board–a place for sharing interesting things. But other times it functions more like a greeting card–short, sweet, silly and genuinely sincere. The like button is a wonderful way for someone to let you know (without any more effort than signing a card) that they are paying attention and that they, in some small but not insignificant way, care. And sometimes, that’s all I’m looking for–a reminder that I’m not so alone after all.

So a big xoxoxo to everyone who answered my request for assistance. You helped me more than you can know.

Tested

Kumo can run like the wind. Before I knew his given name I was calling him Ghost but felt that Arrow might be a better choice.

I learned from the get go that giving chase is of no use–Kumo can run circles around me and does. He is also smart and wily and careful not to get close enough that his collar can be grabbed.

This dog absolutely will not come when called and is not tempted by a proffered treat. In other words, approach is totally on his own terms.

With Kumo’s history of roaming, I took no chances and had him microchipped during his recent surgery. But even with that precaution, there is no question that being off leash is something that can occur only in contained areas.

Kumo arises early, and our first walk is taken while I am yet a bit groggy.

This morning my thoughts were elsewhere when I had the unsettling realization that the leash in my hands was suddenly connected to nothing–evidently I had not attached it firmly to Kumo’s collar and it had come loose. Kumo was just ahead of me but at the same moment I realized he was free, so did he. And he was off like a shot, an arrow.

I didn’t know what to do and nor did he. The call of the wild and all those mourning doves were pulling him off and away. And yet, he did stop when he was a good distance away to look back. Suddenly he was running toward me again and for one brief second I thought he would return. Rather, he ran wildly to and fro, close to me, away again, exhilarated by his sudden freedom of choice. Because it really was up to him at this point.

As I sat on the pavement in the middle of the parking lot, my heart pounding, tears quietly rolled down my cheek. ‘This is it’ I thought, my dream of a little white dog over. And so I stood back up and walked slowly to the building. Maybe, just maybe he would follow. And if not, I would go get Appa, the great white Pyrenees who is Kumo’s first and best friend at Western Avenue, and try to lure my little wild thing back inside that way.

I shut the glass door behind me and Kumo came closer. The minute I opened it he bolted. When I closed the door a second time he cautiously approached. I opened it just a tiny way this time and to my great surprise and overwhelming relief, he came inside.

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At the moment he is laying beside me on the couch, pressed up against my arm as I type. We’ve had our breakfast now and he’s licked my bowl clean for me.

I think we’re good.

Little love

I suddenly find myself in a committed relationship, and nobody could be more surprised than me.

Although there are certain things I’ve missed about having a partner, I have relished living alone. Going to bed at all hours of the night and sleeping in as well, with nobody in that bloody bed but me. Playing loud music, keeping my own schedule, eating what, when and if I feel like it. Staying inside all day long, wearing anything I want or nothing at all–a beautiful way to become more comfortable in one’s own skin. It’s been a long, blessed vacation of sorts.

But then I met somebody. Or rather, my friend Brian did, wandering around out by the train tracks.

This somebody was a wee white dog and he seemed to be lost–a bit disoriented and clearly frantic. It was cold and dark outside–no place for a lost pup–and Brian asked me if I would help corral the little fellow.

That turned out to be easier said than done as our new friend was not about to let us get close to him. So Brian and I spent thirty minutes running around and chasing this wild little dog back and forth, doing our best to corner him so that one of us could grab his collar.

The situation looked hopeless until our neighbor Howie came outside with his great Pyrenees, Appa, whom the little stranger took a great interest in. Then Marianna joined us with her two pups and between the four humans and three dogs we were able to lure the stray close enough that Howie was able to grab his (tagless) collar.

Marianna provided a crate and Brian said our guest could spend the night in his loft. The next morning Brian texted me that he had some previous commitments and so I agreed to walk our little friend. When I let him out of the crate the first thing he did was grab a cat toy and start tossing it in the air. I was charmed and ended up hanging out for two hours until he trusted me enough to approach. And then I took him back to my loft along with the crate.

Several days passed with no word from Animal Control. We decided to take the dog to a local vet to see if he might be microchipped but he was not. By this point I’d given my guest a flea bath and he was sleeping in my bed rather than the crate. And, of course, I was growing fond of him.

But then, on day five, his family called. We learned that our visitor’s name was Kumo (Japanese for white cloud–I’d been calling him ghost). And I said I’d be happy to bring him to them the next day.

That last night together was bittersweet but then again I imagined how happy both Kumo and his family would be at his return.

The reality was slightly different–although they had a teenage son, there were also lots of people in and out of what appeared to be a very chaotic household. Most troubling, Kumo had run away on a Friday evening but they hadn’t even noticed he was gone until the next day. The woman asked me if I loved Kumo (yes, I did). She told me that her husband was ill and that she wasn’t really sure if she could handle the care of a dog–and that she was considering tying him up inside the house to make sure he didn’t escape.

I left her with my name and number but my heart was heavy as I closed the door. However, the reality was that Kumo belonged to this family, not to me.

One week passed and the woman called. She told me that Kumo had run away several more times and Animal Control had warned the family that they would begin incurring fines. She asked if I wanted Kumo. I told her I would call right back–I needed a moment to think.

But of course the answer was obvious.

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Kumo

My free dog has turned out to be quite expensive between some gastric upset, all his shots and neutering (something you get a certificate of bravery for–who knew). He has severe separation anxiety and clearly has had some mistreatment in the past–he ducks when petted, gets frightened easily, and absolutely will not come when called. In other words, in need of some tender loving care.

And I have realized just how much I missed the act of nurturing as well as having a companion.

This is Hope

It’s been more than two weeks now but I’m still high on Lungevity’s National HOPE Summit. Some clever person in attendance coined the hashtag #thisishope which absolutely sums up what I have come to view as one big family reunion. This year we numbered about 300 survivors and caretakers. All with a common goal; doing something about lung cancer.

Dolio, Linnea, Bruno and Diane.

Dolio, Linnea, Bruno and Diane.

Leslie and Andy Trahan (<3 these two)

Leslie and Andy Trahan (

Striking this year were the number of young people in attendance—and of course the older I get, the greater the number of survivors who I look at and think, ‘you could be my child’. Absolutely unacceptable and something that really gets my panties in a twist. However, what these young survivors and their caretakers bring to advocacy is immeasurable passion, energy and optimism. I am also always incredibly moved by those advocates who have lost either a family member (sadly, sometimes a child) or a close friend to lung cancer but continue to fight for not only their lost loved one but all of us with this disease. Thank you.

It is never a good time to have lung cancer but with FDA approval of eleven different drugs for lung cancer since 2006, it is at least a time of increasing therapeutic options. And look at that picture of all the people who have lived for ten years past diagnosis (Diane and myself included)—again, hugely encouraging.

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Survivors ten years and more out from diagnosis

And that first photo? Dolio, Bruno, Diane and I are all lung cancer patients/advocates (although you wouldn’t guess the patient part looking at the picture, and that is why I love it so). The four of us went out to dinner the final evening of HOPE summit. Our reservation had been mistakenly made for the following night and the only available table was outside and it was pretty darn chilly. Diane played the C card and upon hearing that we were all living with lung cancer, the manager was overcome. His mom had just been diagnosed with advanced breast cancer, and our smiling faces made him feel infinitely more hopeful. He ushered us over to perhaps the best seat in the house and then brought us this ridiculous (but oh so fun) tropical drink. It was a lovely and somewhat surreal ending to a fabulous weekend of learning/bonding. Thank you Lungevity and see you next year!

Eleven beautiful and breathtaking years

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And counting. I’ve been so busy LIVING that I have neglected to note that we just zipped on past the eleven year anniversary of my diagnosis with lung cancer. That’s right–ELEVEN BEAUTIFUL AND BREATHTAKING YEARS that I didn’t think I was going to have.

Ever mindful of what a miracle waking up is, I continue to marvel at the fact that I AM ALIVE. Today, this day–and maybe tomorrow too. And you know what? It never gets old. The good, the bad and the ugly alike–it is a privilege to be here and something I shall never take for granted (and if you are reading this, neither should you).

Several days into year twelve (!), I vow to honor the memory of those who had to leave this party far too soon. Your departures hurt and anger–but death cannot tear apart the connections we made in life.

My personal goal going forward? To shift my focus from surviving to thriving. If you run the numbers, I’ve now known I had lung cancer for almost 1/5 of my lifetime–much of that lived on hold.

No longer. It’s full throttle from here on out as I plan to see and experience all that I can possibly cram into this life I call mine. To adventure!

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!

 

Life is good good good; make that great.

What can I say? Twenty months of stability (my last scans were remarkably stable) and it’s starting to feel like a new normal. Dangerous perhaps, this recently acquired ability to relax. Come June I am moving into a different loft and I will be signing a THREE YEAR LEASE. Just words, I know, but heady ones for a girl who has spent the last eleven years imagining the future in three month increments, the time between scans!

I have been in survival mode for a long, long time but I’m starting to switch things up a bit—moving from survive to thrive. I’ve been hitting the art hard—most days I start painting around two or three in the afternoon and go until the light fades. And I’ve been pulling together The House of Redemption, my vintage clothing venture. The best part is neither of these things feels like work anymore—rather like purposeful play.

Self improvement is a central theme for me as of late. Apple is phasing out their one to one program but my subscription is good for another eight months and I’m using the heck out of it. I’ve been limping along on my computer for far too long now—really underutilizing so many of its functions. And then there are my sloppy personal habits, like the 33,000 (really) unopened emails—those have got to go.

Happy picture for a happy post: my cute and colorful college bound kid.

Happy picture for a happy post: my cute and colorful college bound kid.

I’m trying to get a grip on my finances, now that I’ve got some personal assets again post divorce. Last week I opened up a money market account and met with a free financial advisor at the bank—there is so much I don’t know but I am eager to learn. Peter’s got all his college applications in and I’ve spent the last two days working on his College Board financial aid applications and in the process have made a lot of headway on my tax return for 2015—something I have not done alone since I was married almost twenty five years ago.

Of course, I continue to exercise (walking, and soon yoga as well) and I am hoping that this is the year that I really become an inspired cook. I’m reading and writing a lot in in my free time (!) and learning how to play mahjong, japanese style, thanks to Koichiro and Machiko. Supposedly it helps with cognition so I am having fun but also exercising my brain.

The only thing missing is travel plans. I want to visit friends and family but also spend some time getting to know those people and parts of our planet that I am currently unacquainted with. Iceland, here I come!