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.

Twelve. And counting.

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Twelve years ago today I was forty five years old, my youngest child was seven and I was sitting in a hospital bed. I’d been admitted four days earlier after several weeks of antibiotics for a walking pneumonia that just wouldn’t clear up. A CT scan the previous Monday had revealed a large mass in the lower lobe of my left lung and the differential diagnosis was recalcitrant pneumonia, fungal infection or a neoplasm.

I didn’t know what a neoplasm was but my husband’s face had fallen when my general practitioner spoke that word. After she left the room he explained that it was another word for cancer. We’d then driven directly to the local hospital where I was placed on IV antibiotics.

Those first days were awful. I was in a room with three other woman, one of whom was dying and another who’d had a severe asthma attack. As I lay in bed I worked incessantly on my laptop researching everything I could about lung cancer. One thing stood out–the dismal five year survival statistics–15%.

The day of my biopsy the patient before me was a prisoner, handcuffed to his wheelchair and accompanied by two officers. When my turn came the surgeon performing the procedure told me that it was highly unlikely that I, a young never smoker, would have lung cancer and that what he was seeing on the CT scanner looked like a fungal infection.

After the biopsy I had to lay very still for several hours without speaking so as to minimize the chances of a pneumothorax. This was difficult as one of the attendants was someone I casually knew, and she kept asking me questions. My lung did partially collapse, as it now has every single time I’ve had a biopsy.

On Thursday morning my doctor came to my room first thing. My husband hadn’t arrived yet and she stalled, telling me a protracted story about her daughter and some dramatic production that featured a field of sunflowers. She said “You know, a sunflower represents hope.”

When my husband entered the room my doctor got right to the point. “I’m sorry but you have lung cancer.”

I really don’t remember anything she said after that as both my vision and my hearing seemed to have suddenly constricted. I had this sensation that I was in an airplane and it was going down. My husband would end up having to call my family members–I was simply too devastated to speak to anyone.

However something incredibly fortunate happened later that day, something that changed everything.

I was assigned an oncologist, who spoke to me only briefly. That evening my husband called him with a question and this oncologist was incredibly rude. We decided that he was not someone to whom I would like to trust my care. And so my husband immediately called one of my dearest friends, whose husband was a surgeon, asking for their opinion as to a good doctor.

Her husband had done his residency at Massachusetts General Hospital, and he gave us the name of the thoracic surgeon he had worked under. And that is how I ended up at a major research center rather than a local hospital. Because of one rude oncologist. To whom I actually now owe a thank you.

#twelve&counting

Losing it

Earlier this week I made my morning cup of coffee immediately upon rising, just as I always do. But then I couldn’t find it. Anywhere. And I live in a one room loft. I also left my eyeglasses at a local restaurant over the weekend and as their staff’s search turned up nothing, I’m going to have to buy a new pair. Yesterday I misplaced the bra I was planning on wearing. I later found it in a bowl of oranges. Don’t ask, as I couldn’t answer, because I simply do not know.

Sometimes it’s funny, other times it’s frustrating as hell.

All these years of clinical trials and continuous treatment are catching up to me. Add in menopause and advancing age as well as the fact that I live alone, in itself a rather extraordinary thing for a person dealing with a terminal illness.

Yet there is an upside. I am now convinced that children have incredibly short attention spans by design (so to speak). That if they were able to mull, ponder and plan the way adults do, they might well waste the precious time allotted to childhood. There is a magnificent advantage to a wandering perspective–so incredibly well suited to experiencing the world with eyes wide open and without bias.

With my limited ability to recall, I am rather like a child. Everything feels fresh and seemingly brand new. My focus is short, but also incredibly intense. At times it as if I am tripping, my senses tickled by any stimulus at all. As an artist, this is a boon. Emotionally, it can also be of enormous benefit, as I am no longer prone to extensive rumination; once upon a time, losing my (beautiful and expensive) blue eyeglasses would have undone me, at least for a time. I regret their loss, but in the same way a child mourns a broken toy–briefly.

It is only when I need to function as an adult; someone with responsibilities and hard deadlines, that this lack of linear concentration becomes a true liability. I would in fact consider it almost a disability, although one that is neither obvious nor fully understood by those around me. I believe that might be because my cognitive challenges don’t reflect diminished intellect but rather the increasing inability to retain, recollect and organize information.

I could use some help–some sort of cheery task master. Someone who would commit to a couple of hours each week to assist me with those chores I now find so daunting (paying bills, taxes, getting my vintage clothing business up and running, managing my finances).

I already devote well over a third of my income to health care and I think a personal assistant is likely a luxury above my means. However, I would like to propose that there should be some sort of federal agency (yes, I’m dreaming) akin to the U.S. Department of Veterans Affairs for clinical trial participants. That there be recognition (on the federal level) that in the war on cancer, clinical trial participants are serving on the front line. And that we,┬álike veterans of other wars, deserve some sort of special consideration of both what has been given but also taken. Financially, emotionally, physically.

I’m committed to continuing to fight the good fight–and I do so gladly. With or without assistance. However, if anybody out there with mad organizational skills and a little spare time wants to come hang out, coffee’s included.

*if I can find it ­čÖé

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.

In gratitude

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So I’m about to tell you something that is either going to make you laugh or cry. Or not. Maybe you’ll just want to punch me in the face.

Sometimes I get really, really tired of being grateful.

Awful, isn’t it. I know how flipping lucky I am to be alive and most days, my gratitude is boundless. However, twelve years of being grateful for something most people take for granted (waking up in the morning) actually can get old.

As a cancer patient it is expected and accepted that you will feel all sorts of less than pretty emotions. Anger, sorrow, frustration, fear. Confusion. Depression. Bone deep weariness. All taken in stride.

But ingratitude?

The minute I start feeling anything resembling self pity I quickly self admonish. Because I am only too aware what the alternative is.

Those of us with terminal illnesses set the bar both impossibly high but also brutally low.

There is a self conciousness to life when every moment is fraught and at times I dearly miss the insouciance of before. As in, before cancer. The self awareness I have gained has been prompted by significant and persistent provocation. I am both wiser and sadder. And some mornings I’d just like to skip that part about being grateful.

Not because I’m not, but rather because there was something glorious about being so certain that something was due you that giving thanks never even crossed your mind.

I am beyond either innocence or assumption. And that’s ok. I have scans tomorrow, and an appointment with Dr. Shaw next Tuesday. The scans I could do without but the appointment with Dr. Shaw? There is no place I’d rather be. And yes, I will be feeling enormous gratitude.

How many ways can cancer break your heart

Seemingly the possibilities are endless.

Upon first hearing ‘you have cancer’ we were forced to face the specter of mortality; in our face and way too close for comfort.

Next up was the impact our diagnosis had on friends and family and if we were parents, our children–now suddenly faced with challenges that had no rightful place in the happy childhood we’d imagined for them.

Loss was a word that soon figured largely in our everyday existence, with bodies that suddenly looked and felt very different as cancer became part of our identity on both the meta and purely physical level.

Stress and anxiety—our finances, interpersonal relationships, jobs. Everything was suddenly at risk.

However, that didn’t stop each of us from trying to put a brave face on. We sucked it up and made an honest effort to find the silver lining in cancer. Certainly there was opportunity for personal growth, but at a cost oh so dear.

And then we discovered that the one really good thing to come from our disease was each other.

Since my diagnosis, I have had the privilege of knowing, interacting with and often growing quite close to an incredible assortment of extraordinary individuals. Brave, gracious, generous, kind, caring, fun. Lovely, lovely people who have made my life so much richer.

However, there is an obvious downside to falling in love with others who are battling cancer and that is the potential for heartbreak.

Last week the lung cancer community lost someone who had touched the hearts of many. Maybe it was her youth, the fact that she was a young wife and mother, or perhaps it was Elizabeth Dessureault’s┬áradiant smile and outgoing personality that made her so appealing and accessible.

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Her passing took us each by surprise and the ripple of grief soon became a big wave. Shock and sadness turned to anger and for some, fear.

The truth is, you can have the best oncologist in the world (Elizabeth, like me, saw Dr. Shaw) and although your odds may be improved, the course of this disease remains ridiculously unpredictable.

It is all so very disheartening.

And yet. There is only one way to go and that is forward. You and me. Live and love some more. Because every moment is precious and no one is assured a tomorrow.