Category Archives: Living with lung cancer

Oh yes you can

When it comes to life, I am not adverse to dreaming on a large scale (go big or go home). And yet I remain ineffably grounded in reality. Words such as scaleable and practical come to mind. And, my all time favorite, doable.

I like doable because it is a word that neither dashes hope nor over-promises. Doable simply says, this thing could be done. Put another way, it is possible. And that leaves a lot of latitude.

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And the phonetic rendering is absolutely charming…

When I first learned I had cancer and specifically, lung cancer–I knew I was heading into some stiff winds. However the little voice in my head said, ‘This is going to be hard but I can do this.’

That can-do attitude has served me extraordinarily well, and the word can’t has been pretty much excised from my vocabulary.

The truth is, some words just aren’t particularly useful. Take cure; that word is absolute bullshit. First of all, the meaning is nebulous: ‘relieve (a person or animal) of the symptoms of a disease or condition’. Secondly, the impact of a word like cure is potentially nefarious.

Everyone with cancer wants to be cured. Far too many of us have been told we never will be, that our cancer is ‘incurable’. The distinction/distance between these two supposed states–cured and incurable–is one of immense emotional devastation.

It you are incurable, than what can you possibly hope for?

Well, how about being healed. Whereas cure may be a technical impossibility, (and do remember, these are words, all words, not necessarily realities), healing is actually incredibly doable. The definition of healing is ‘to become sound or healthy again’.

So do it. Reframe the way you regard yourself. Discard that which is unhelpful and even hurtful. Embrace where you are at at right now. Heal yourself.

xo

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Words: the worry and the wonder

Approximately eighteen months ago an old friend said the most astounding thing to me. “I believe you’re healing.”

I had no idea what to make of these words and my first impulse was that this friend had truly misunderstood the gravity of my situation. “It’s stage IV, terminal cancer” I reminded him.

But then I started to turn those words around in my head. The idea of healing was so very compelling and yet seemingly beyond the realm of possibility. And to be clear, it was not a spiritual healing I was imagining, but rather corporal—that this diseased body of mine should become whole again.

Once I started thinking about it I couldn’t let it go. I was tired of being terminal. Thinking about dying all the time is a hell of a way to live, and I had already spent far too much of my life doing just that.

Finally, in an ultimate moment of WTF, I decided that I would embrace the idea of healing. That I would take that final leap of faith and simply resolve myself healthy.

I mean, what did I have to lose? Believing I was healed, even if it wasn’t quite true, could only make my life better.

And so it has. Of course, that resolve was tested with my last scan but damned if it didn’t turn out A-ok. I had a little chat with Dr. Shaw and told her that some days I felt as if I was cured. Rather than discouraging me she simply said ‘Good.’

The truth is, nobody really knows. Certainly my lungs aren’t clear, but then again, with all they’ve been through, it could be scar tissue that we are seeing on the scans. In the meantime, I feel fabulous. And, frankly, healed. A feeling I am determined to hang onto for as long as possible.

xo

 

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!