Author Archives: linnea11

Rise and shine

Because what else would you do.

This, my friends, is necessity/habit/resolve at its leanest.

As long as I have the opportunity to do so, I intend to make the very best of each and every day. Right now that means prepping for one particular outcome (getting my affairs in order) while staying open to the possibility that those efforts are in fact premature.

It’s a delicate balance, this living while dying shit. A bit of a challenge, if you will. But–strangely–one I am embracing. It doesn’t get more clear headed than this. I am rapt with attention. As honest with myself as I have ever been. Taking it all in while wrapping it all up.

Acknowledging my inevitable destination (if not now, later) while savoring every moment. Truly present. Unafraid. Aware.

Clarity.

I am at an interesting place. Truly.

Part of this comes from an overriding sense of it’s time to close up shop-ness. A nice way of saying, I might be dying.

That. But also (and this is the scenario I much prefer), all that hard work is paying off. I’m talking about personal growth and my quest to be a better, saner version of myself. Not long ago my son Peter, our little mensch, made the observation that I was at my most reasonable. I realize that sounds like an incomplete sentence but I knew exactly what he meant. It’s a high compliment and just like my favorite word ok, does not overstate.

I’ve been through a little bit of hell in this lifetime of mine. The good news is there is always a potential benefit to struggle. Think of it as stairs versus escalator. They both get you to the same place but one gives you a bit of a workout, thereby building muscle.

I am strong in body and in spirit. And also brave enough to regard myself with compassion but not charity. This is thread the needle time. And if I want to hold it all together I need to lighten the load. Let go of what is not essential. Revel in that which is.

Reach. But also maintain reason. Rise to the occasion.

Eyes

wide

open.

Salty blog

From the Harvard Medical School online journal, what might be my favorite descriptor ever. Best served hot.

Patient Perspective: Linnea Olson, Cancer Activist.

Hurry hurry hurry up

So. I need a 4th generation ALK inhibitor. Stat. And I’m not encouraged by the fact that it’s been almost five years since lorlatinib, a 3rd generation ALK inhibitor, became available in clinical trials.

And although no one would argue that the 6.8 years of median overall survival that is now a statistical probability for ALK+ patients is a good thing, I can’t help but believe it may have negatively impacted the urgency to identify further ALK inhibitors.

Over here in Linnea Land we are feeling that urgency thing big-time.

Today was scan reviews aaaaaaand……just as I expected the news was not cheery. Continuing progression. Not rapid and yet decidedly of the rampant variety. Upon further questioning, an estimated three to six months until lorlatinib is not going to be enough. Which would be okay if there was in fact anything else.

Symptomatically, I knew as much. A nebulizer is being delivered tomorrow and I will once again become an albuterol junkie. Breathing is some necessary shit and I need to get mine back on track.

Me.

Last weekend I was in Colorado for my niece Mesa’s baby shower. That, and a much needed break from my own reality. Yesterday morning I sat in this egg shaped chair, my sweet spot, and said to my sister Bink: ‘I’m just going to stay. I mean, why would I go?‘ Bink and her husband Greg brought me a smoothie and a latte each morning and a martini every evening. The life, y’all. But my own reality show was calling and I boarded that airplane back to Boston anyway. This morning I was at Yawkey, not eager and yet ready to receive that reality check, gently delivered by Goddess number one, Dr. Alice Shaw.

Sweeeeeet spot. Notice the empty smoothie glass. And that Colorado sunshine.

After an appointment with Goddess number two (my social worker, Mary Susan Convery), I walked to the Boston Common to meet a date because even when, maybe especially when the shit goes down this hard, you need to just keep on living. As loud and as large as life will let you. And sometimes, even larger.

The gorgeous Boston Common.

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

The heart is a muscle

And you damn well better use it. Even if—sometimes especially if—it hurts. Love is the heavy lifting when it comes to this little pump. Love, love and more love.

Heartbreak? It’s real but, in the same way a tree requires wind in order to put down deep roots, a heart can do with a good gale now and again. Yes, really. Loving and losing is our greatest fear. But that is also what makes love so very precious.

The hardest part of living with a disease like lung cancer is the loss. If you make the decision to establish connections with people who are facing the sort of survival stats we have, well, you need to understand from the get-go that death is going to be a frequent part of the equation.

It sucks, and sometimes it overwhelms as well.

I asked my oncologist, Dr. Alice Shaw, how she dealt with losing patients. Her response was that she viewed her role as a thoracic oncologist as a privilege. That caring for someone (in all senses of the word) as they faced extraordinary circumstances was an honor.

Her response struck me, because it is exactly the way I feel. Privileged to love so very many. Honored to share this fucking journey. And in awe of the fact that my heart–although at times so very heavy–has only grown stronger.

Life is hard, and avoiding that reality is not going to make anything easier. Nor is letting your heart go all flabby, just because you’re afraid of giving it a workout. Use it or lose it y’all. Live. Love. Heart, eyes and mind wide open.

xoxoxo

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