Category Archives: Uncategorized

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

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.