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

Throwing shade

Just go away, you sticky little bastards.

I talk to my cancer, and that was this morning’s heartfelt greeting.

Yes. After years of hardcore warfare, my body the battle ground, I’m trying another approach.

Not a surrender, not a truce, but rather one in which I attempt to understand where the enemy (that would be cancer) is coming from. Not go high, go low.

It’s such a bizarre concept, my own cells run amuck. Unlike a virus, which can jump hosts, when I die, my cancer dies. Lose lose. Total annihilation.

Of course, it’s wrong to assume that this is not an end unto itself; The End. I mean, we all know this planet’s getting crowded. Of course, in this particular case, it sucks to be part of the solution.

I also think that part of the genius of DNA is the possibility for error. A consistent state of stasis is one big drag. Given the rate at which DNA replicates, errors of transcription offer fresh possibilities. Mutations allow life to evolve but they certainly can wreak havoc on an individual organism.

Which brings me back to my morning conversation. At this point I am at some sort of personal ground zero. Not emotionally (I am fine, really fine) but rather at a loss per how to address these errant cells of mine.

As captain of this ship, I can’t help but feel that a mutiny is under way. “If my body goes under, you go with it.” I tell these rogue cells. “Your ways are self serving and short sided. By gobbling up everything, you shall kill us all.”

Of course I see the parallels—what we humans are doing to the earth is not so very different than what my cancer is doing to me.

“What’s the point?” I say. “Why can’t we all live in harmony?”

These little bedside chats are my attempt to stay reasonable. But cancer is beyond reason. If I am to survive, I’m gonna have to fight–probably dirty.

Hey cancer, nobody likes you.

Cancer, well, cancer don’t care. And that’s the flipping problem.

Out LIVING. Loudly so.

Yes, I love that double entendre. And it is my intention to outLIVE as well.

But sometimes a girl just has to play. Therefore, my recent trip to Philadelphia started a few days prior to the conference. Four, to be exact.

My friend Rufiya picked me up at the airport on Thursday. We went straight to a farm to table restaurant followed by a trip to the Philadelphia Distillery (home of Bluecoat Gin) where the bartender regaled us (an effort I heartily supported) and then on to an evening with Michelle Wolf, the comedian who raised more than a few eyebrows at the 2018 White House Correspondent’s Dinner.

The next day Rufiya dropped me off at Princeton University and I perused their excellent art collection before spending a pleasurable hour in the amazing Labyrinth bookstore. After dinner Rufiya and I took a detour to Robbinsville New Jersey to visit a Hindu temple complex, the Swaminarayan Akshardham.

When you first drive up to this mammoth structure it looks almost as if you are at a high end mall or in Las Vegas (that’s from the parking lot). As you approach the entrance you begin to notice the intricate carvings in gorgeous Carrara marble. Once inside women and girls are ushered to the left, men and boys to the right. Shoes are removed and if a woman is dressed ‘immodestly’, a Sari is provided. The marble floor has radiant heat (cooled in the summer, we were told) which makes the entire experience more sensual.

It was our excellent fortune to arrive just before the ceremony where the gods are fed and we were graciously invited to participate. We were allowed to enter the heart of the temple where we took a seat on the floor facing the elaborately dressed gods. It is very traditional–with males in the front and females in the back. Chanting, incense, priests in orange robes. At the conclusion of the ceremony we were encouraged to join in another ritual, where you go to a special room, cleanse your hands and then are handed a shiny metal bowl filled with hot water. You take this bowl to a statue of a god, make a wish, and pour the water over the god. The entire experience was both highly spiritual and incredibly magical.

Rufiya, the consummate hostess, had something special planned for Saturday morning as well and we were up at the crack of dawn and headed north to the King Spa and Sauna in Palisades Park. Mind blown.

I will try to describe.

After entering you are handed a bracelet (for charging food and services) and your uniform. For women it was baggy pink shorts and a t-shirt, a washcloth and a little pink cotton cap. The spa is huge—IKEA sized with multiple levels. The dry section (hot saunas) is unisex and consists of various rooms, igloos from sort-of-hot to so-very-hot-you-need-to-wrap-yourself-in-a-tarp-hot before entering (the one room we passed on). You lie on the floor in the igloos on tatami mats with your neck supported by a wooden pillow. Each igloo is lined with various minerals and crystals or salt and has bags of herbs suspended from the beams. Aromatic, hot and fantastic!

Mixed in with the igloos are sleeping rooms with either tatami mats or recliners (the spa is open 24 hours a day)–and there are also spaces with laptops and televisions. Onsite manicure or pedicure is an option. And a restaurant with ornately carved chairs upholstered in pink leather. We started our day with ginger tea and brown eggs that had been cooked in the hottest igloo (!). Lunch was traditional Korean fare–phenomenal kimchee. After that we were ready for the wet room.

This is the moment that you leave your inhibitions behind. Although segregated by gender, everyone is nude. There are both hot and cold soaking pools, showers, and a steam sauna. The room is very noisy and lined with multiple tiled stations equipped with handheld sprayers. Each station has an overturned bucket and women sit on top of these to scrub and bathe. I’m not sure I’ve ever seen so much running water. Along the back wall is a row of tables covered in pink vinyl, and this is where the wet and dry massages take place.

Rufiya opted for a wet massage, which is basically an hour and a half long exfoliation. I, not quite so brave, went for the dry.

When it was my turn, a very short Korean woman dressed in black bra and panties came and took me by the hand and lead me to her table. Then she slathered my skin in oil, wrapped me in steaming hot towels, and applied a mask to my face made from freshly mashed cucumber. She spoke no English but sang softly in Korean as she worked. At one point she pounded (gently) her fists on my forehead; at another juncture she suddenly threw my arms off the table. After forty minutes she motioned for me to turn over onto my stomach. I opened my eyes to peer around and realized she had crawled on top of the table and was straddling my back (‘riding me like a horse’, is the way I described it to one friend ;). At the end of the massage she washed and conditioned my hair, sat me back up, slapped me on the back and said ‘You good.’ It was all so very odd and so wonderful as well.

But my friend Rufiya wasn’t finished with me yet. Nope. I did this. Billed innocuously as a mugwort bath, I had no idea what I was getting into. It was…really odd but, I guess, an experience. I’d advise passing on the mugwort and just getting more food in the restaurant. BTW, if you are interesting in giving King Spa and Sauna a try, check out Groupon for a steep discount.

I fell asleep in the car on the way home–turns out all that spa-ing is exhausting. But the next morning Rufiya dropped me off in Philadelphia in preparation for the conference and I hit both The Barnes Foundation and the Philadelphia Museum of Art. Four action packed days of plain old FUN.

Clinical Trials Transformation Initiative

Every once in a blue moon I have the opportunity to participate in a project that feels truly substantive. Transformational, even. Last week I was in Silver Springs, Maryland serving on a panel at a workshop that was a collaboration between CTTI (Clinical Trials Transformation Initiative) and the FDA (Food and Drug Administration).

The last supper? Hopefully one of many.

It was a full day of intelligent dialogue about the actual patient experience per clinical trials. Barriers, burdens, successes, failures. With a clear focus on ways of doing better.

Cary Medosch, Bray Patrick-Lake, Linnea Olson 🙂

I am grateful to Duke, CTTI and the FDA for the opportunity to have this conversation. I left feeling very hopeful. For those of you who are curious as to what transpired, the workshop was recorded and you can view the video by following this link. My session was the third; but all of them well worth watching.