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And these are life lessons

So. I want to have a little chat about love and will. Love first.

The last five years have tested my heart in ways I never imagined. My interpersonal relationships, once tied up in a tidy package called family, totally unravelled in the summer of 2014. My mother died several days after I took my first dose of lorlatinib. A month later, I was served with papers and my divorce moved from somewhat amicable to highly contentious.

The initial side effects of lorlatinib (I entered trial in the third cohort, dose escalation phase) were unanticipated and horrific. Arthritic neuropathy so severe I awakened one morning to hands that felt like blocks of wood. Hallucinations at night, a sense of disorientation and unreality during my waking hours. Emotions that were both unfamiliar and impossible to modulate. An inability to recall much of anything including wide swathes of the past. And my short term memory was totally fried; I could no longer think in a linear fashion and became incredibly disorganized.

I was alive but a friggin mess. Struggling with the details (cooking, paying bills, getting through that awful divorce) while also adjusting to a totally different lifestyle.

Eventually I began to revel in my freedom and the fact that I was feeling physically strong again. Sadly, my increased irritability and lack of inhibition meant that I got into arguments with far too many people. Some would come to understand that this was beyond my control, others have yet to forgive me.

It was, at best, an imperfect life. At times I was incredibly sad. But I would drag my ass out of bed every single day and go outside and walk. Sometimes for miles and miles, taking in the (also imperfect) world around me.

I was learning about unconditional love. I didn’t need to be cancer free, my relationships didn’t need to be shipshape, my home could be in disarray. I loved life and eventually came to truly love myself as well. Before long I realized that simply being ok was enough. More than enough.

And of course while I was being schooled in unconditional love I was also coming to understand the role of will. There were times (many times) where I thought it was all too much. One crisis would be followed by another and I was dogged by depression. However, I began each day with ‘I’m alive, I’m alive, I’m alive’; my form of litany and a sincere expression of both wonder and gratitude. I also kept walking–convinced that being physically strong was one way I could take back some control.

Eventually my brain began to heal; old memories like a field that had been scorched but now sending up fresh shoots. And just as I was growing stronger physically, all the trials and tribulations were building emotional muscle as well. When I would go to the gym with my son August he would encourage me to always push harder. ‘It’s not going to help until it hurts’ he would say. Oh how true; how applicable to life itself.

So here I am. Once again facing the unknown and yet, as prepared as a person can be. If will alone could keep me alive, I’d be immortal. It can’t and it won’t but I have no doubt that a strong will is only a good thing. And life? Well, as my love is unconditional, it shall not disappoint.

This is life

It occurred to me some months ago that one of the you can’t win for losing aspects of cancer is the accompanying stress. A diagnosis, progression—just living with this shit—it’s all incredibly anxiety making. And you know what? That is to the cancer’s advantage, but not to ours.

I am certain stress has such a deleterious impact on our immune system that it exacerbates malignancy. Yup. Cancer really has the upper hand as it not only fucks with our cells, it fucks with our heads as well.

That is, if we let it.

Cancer may kill my body but it will never get my spirit. I have decided, yes, decided, that I’m just not going to let my progression get me down.

Crazy maybe, but so far, so good.

To wit. The week before I travelled to Italy (trip of a lifetime!) I went on six dates. That’s right–seven days, six dates, five different people. And I found a place to live.

The three weeks in Italy? Could not have had more fun. Ate a ton of pasta, drank way too much wine, and had gelato at every opportunity. Walked a minimum of six miles each day and actually lost weight. Also wrote and submitted an abstract as I am heading to Barcelona in the fall as faculty at the next IASLC annual meeting.

I hit the ground running upon my return, as I have begun to pack for the upcoming move. I’ve already been on two dates (one the night after I returned) with two more before the week ends. On Friday I will be presenting at Harvard Medical School and on Monday I fly to NYC to speak at GE.

My cough reminds me of what is going on in my chest but determination is keeping me from dwelling on it. The goal is to stay strong enough to live with my cancer until the next effective therapy comes around.

And in the meantime? I am living large. Over the top, unrealistic, and totally blissed out. Not a bad way to go. Wherever it is that I am heading 🙂

An atheist in Italy

That would be me.

Although I am very open about my lack of belief in or adherence to any religious doctrine, I also don’t focus on it or make it part of my general discourse.

No need to, from my perspective. I am firm in my disbelief. And just as I won’t try to talk you out of your viewpoint, I would prefer that others not try to talk me out of mine.

I am, however, very generous when it comes to religion. Again, as long as you don’t step on my rights, I am always open to learning more about and even experiencing the things that are important to others.

Cathedrals have always drawn me–particularly the notion of sanctuary. And not only are they often architectural marvels, houses of worship are home to much precious art. However, visiting a place of worship is not a religious experience for me. My awe is strictly secular.

In addition to churches and cathedrals, my friend Marc and I have been making the rounds of the museums. Last Thursday we went to Museo Galileo, where the Medici collection of scientific instruments is housed.

Museo Galileo

Atheism is not to be confused with belief in nothing. This atheist believes in love, life, death, art, being in the right place at the right time, and a whole slew of other marvelous (and some not so marvelous) things. And, of course, science. Observation, experimentation, empirical evidence. All in a quest to better understand ourselves and the world we live in. This is my belief system. This is the source of my joy.

C’est moi

Freethinker: a person who thinks freely or independently : one who forms opinions on the basis of reason independently of authority especially.

I view the world from two distinct lens. Natural law (an observable law relating to natural phenomena) versus human constructs. And I really, truly only respect the former.

Although I would argue this is a sensible approach to life, I often run afoul of those entities which either hew to or consider themselves The Authority. Undoubtedly this viewpoint started early in my life, when so-called rules got in the way of whatever activity I had planned. My response to being admonished by my parents and or teachers– ‘You are not the boss of me’ was certainly uttered only under my tongue after the first few retorts resulted in a spirited spanking.

Tall, tom-boyed, gap toothed, left-handed, atheist. Non-normative comes naturally to me. Which is not to imply that I am always well received.

What is a breath of fresh air to some is a pain in the ass to others. Just ask my soon to not be landlord.

Or the pharmacist who would not refill my prescription (for a drug I have taken for fourteen years) simply because there was an error in the way it had been transcribed, with it reading both every seven hours and twice a day.

One week later I finally said to him, ‘You know, it doesn’t matter what it says on the bottle, I will take those pills as often as I want to anyway.’ Note added to chart, I would imagine.

Fortunately my oncologist is on board with logic and is a goddess of empathy. As the scrip was for ativan and I was coming off of two sleepless nights per restarting lorlatinib, I was feeling a little desperate. Saturday night I messaged her. She was out (on a date with her husband, I hope) and yet stopped what she was doing to call the pharmacy on my behalf.

That night I slept like a baby. Dreaming dreams unschooled and unkempt. Authority free.

Stone baby

Night shadows

Life threw me a little curve last Saturday. It started with a sharp pain in my right side. At first I thought it was a muscle cramp but it went zero to sixty as it wrapped around my back and moved up between my shoulders. Two hours later I realized I was in some trouble when I tried to go to the bathroom and almost fainted.

Living in a community has some solid perks. We have a loft-wide email and I sent out a plaintive message: Help. Within five minutes a number of neighbors had responded. One called 911, another agreed to watch Kumo.

In the meantime I had messaged my oncologist, who made it clear that she preferred I come to MGH rather than the local hospital. Once the ambulance arrived they told me they weren’t able to transport me to Boston so two of my neighbors, Ann Marie and Bill, pulled their car up to the entrance of the lofts and then drove me straight to the ER at MGH.

My daughter Jemesii and son Peter were already there when we arrived. And man, did those two advocate for me.

I was in the most serious pain I’ve ever been in (with a spiral fracture of my ankle, a ruptured ectopic pregnancy, and vaginal delivery of a 10 lb 4 oz baby for reference). Jem and Pete manned the call button and pestered the staff until I got my first dose of morphine and a handful of relief. When the ER doctor came to examine me he asked what I had been doing just prior to the pain starting. ‘Eating popcorn’ I said. ‘Buttered?’ he asked. Well, of course.

He then said, ‘I am almost certain this is a gallbladder attack.’

I could live with that. The problem is, none of the diagnostics (labs, CT scan, HIDA scan, x-ray, ultrasound, colonoscopy) were confirmatory.

Fortunately, by Tuesday (day four) the pain and nausea began to ease. That night Peter came to hang out with me and he was reading to me about what it was like to pass a gallstone. It suddenly occurred to me that that morning when bathing (after a little accident secondary to prepping for the colonoscopy) I had found what, in retrospect, was almost most definitively a gallstone.

Well, medical science likes clear hard data so the official diagnosis is no diagnosis. But I haven’t any doubt now what happened. In fact, when describing the pain, I said it was like trying to pass a cherry pit through the head of a needle. And once the morphine kicked in, I joked with my kids that at least labor resulted in something good, like a baby. Not, as it would turn out, a stupid stone.

However, even though I could have done without this particular adventure, it was a formidable bonding experience for me and my adult children. In the face of crisis, we all responded quickly and without hesitation. In the ER my son and daughter took turns holding my hand and only left just before midnight because I shooed them out.

This will not be the last storm we face together, and as a trial run, I’d say we all got an A+. Yea for team Linnea.

Rock, reel and roll.

up down up

Getting knocked on my keister is a personal proclivity. Not by choice but rather situational in nature.

I just can’t seem to arrive at a place where life is smooth sailing. In fact, I think I ought to stop believing that I will. It’s disappointing. Reclining in a lounge chair on a beach somewhere with a cold drink in hand (garnished with some fruit and a paper umbrella please) is a go-to fantasy of mine. As in, I sure would rather be there rather than stretched out in a CT scanner, as I will be tomorrow morning.

In all honesty, getting scanned is not such a big deal. Been there, done that, will do it again. And again.

That is something I can count on. It’s the surprises that catch me off guard. Which is surprising, because those too are predictable. At the moment I’m dealing with a major inconvenience that has nothing to do with cancer. Although that isn’t quite accurate, as having cancer often complicates even seemingly simple situations. Plan a trip three months from now? Sure. Maybe.

When the shit hits the fan my emotions generally assume a fetal position. The old duck and crawl–right under the covers. However, the fact that I both live alone and own a dog keeps me honest. Six hours max and I must rise to the occasion.

Which is really very helpful. Sometimes you just have to go through the motions, with an emphasis on moving. Actionable. That’s a beautiful word, connoting possibilities. And although it is not probable, it is possible that both some sand and a long tall cold one are close at hand.

xo

Ten four. Incoming: year fifteen

Well y’all, I may be limping across the finish but I made it. It’s now been fourteen full years since my world turned upside down. Fourteen years since I learned that in fact you could be forty-five years old, a never smoker, and still get lung cancer.

My general practitioner–the same one who misdiagnosed me with asthma–broke the news. It would be several years more before I would learn that my earlier doctor–who had been traveling to a birding convention on the morning of September 11 and was a passenger in one of the jets that hit the twin towers–had written this in my charts: ‘On the off chance that this young non-smoking woman has a lung neoplasm.’

By the time I received the diagnosis, my tumor was five centimeters in diameter. Fortunately, the brain MRI came back negative for metastases and the full body PET and bone scans also seemed to indicate that the cancer was contained to my lung.

One week later I met with my thoracic surgeon. I put on a pink sweater that morning, consciously trying to look young, healthy and worth saving. Another week would elapse prior to my surgery. I had wanted to pin a note to my johnnie reading ‘Out, out, damn spot’–a cheeky nod to Shakespeare, but I chickened out.

The surgeon had explained that the first thing he would do would be to remove a number of thoracic lymph nodes which would be biopsied immediately. If any of them came back positive for cancer, he would close me right back up.

When I awakened in the ICU, my first question was whether or not it had been a long surgery. All of the tubes running from my body should have made that obvious.

Once I was released to a room, Peter came to visit with his dad. He immediately crawled up in my bed and wrapped himself around my legs and just lay there whimpering. It broke my heart but also reinforced what I already understood–I absolutely had to stay alive.

In 2005 no one could have imagined that fourteen years later I would in fact still be here. Two weeks from today, we will celebrate Peter’s 22nd birthday.

It’s been an incredible journey and it’s not over yet. Here’s sincerrely hoping that a year from now, I’ll be posting a giant fifteen at the top of the page.

xo