Author Archives: linnea11

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.

Patients talk about Clinical Trials

Couple of my friends/fellow panelists shared this video on facebook and I felt I probably ought to do the same. This is from last spring–thank you Bonnie Addario for inviting us to participate and share our experiences and viewpoints. Together we are moving that needle.

On the move

Peripatetic. Such has been my existence as of late.

No complaints. I have always craved the traveling life and feel extremely fortunate that I have been provided with these opportunities.

First, the annual Hope Summit sponsored by LUNGevity and now referred to by some acronym I shall never use (the world doesn’t need another acronym, but it can never get enough HOPE).

Each year this giant reunion of my lung cancer family becomes ever more meaningful. One big love fest. And given the fact that the majority of the attendees are living with a terminal illness, you’d never believe how much fun we cram into those few days.

People who have been living with lung cancer for ten+ years

LUNGevity outdid themselves this year, with the best lineup of speakers yet. I was honored to be part of a committee that planned the conference as well as to sit on a panel, ostensibly about palliative care, but titled Sex, Drugs and Rock and Roll. Next year I think we should drop the pretense and just jump right into an extended conversation per the living part of dying.

A little over a week post conference, I returned to DC for my annual get together with some of my childhood friends. We can’t not have a good time (really) and they too are like family to me. Kate, Melinda, Sally—I love you so.

When grownups take a selfie: Kate and me and a monument

I caught my breath (sort of) before departing for Florence, Italy on the 27th of May. This was an opportunity that came about because A. my friend Marc comes to Florence every summer and invited all his friends to join him and B. as I just turned 59 and 1/2, I have access to my retirement fund without penalty. If I thought I was going to live to 80 I might not touch it but friends, the reality is somewhat different. And in its own way, freeing.

It’s going to be interesting to see if I run out of money or breath first. Fortunately I now have a little wiggle room in both areas and I’m going to give life a run for its money. So to speak.

So yes, Florence. Dream of a lifetime. Second full day here we climbed the Duomo. 463 steps up, 463 down. I did it, y’all. Fourth in line and only had to let four people pass me on the way up. All young enough to be my children. Own that, lung cancer.

And of course I have been taking lots and lots of photos. Should you like to share in some of my experience, give me a follow on instagram: @Linnea Olson.

xoxo

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.

The ugly

Ouchy.

After fourteen years and three clincal trials, my veins are as heavily trafficked as a junkie’s. And getting a needle in there is not for the faint of heart.

The first nurse who tried to take my blood in the ER simply gave up. No shit. “A new shift is coming on” she said. Several hours later nurse number two gave it a go and the aftermath is above.

Clearly all phlebotomists are not created equally. Thank the heavens I am not needle phobic or I might have given up the ghost long ago.

I share this little bit of ugliness simply to remind all that cancer is a multi-faceted disease. There is the injury but also the insult. The simple but not so simple little shit that we all put up with on a daily basis.

The collateral damage that comes from living with a chronic disease that requires both constant treatment and attendant monitoring. I mean, I can’t even fathom the amount of blood that has now been drawn from my body. Liters upon liters. Years upon years.

Just part of the price I pay to hang with y’all a little bit longer.