Tag Archives: Paul Kalanithi

When Breath Becomes air

If you haven’t yet read When Breath Becomes air, Dr. Paul Kalanithi’s extraordinary book about his all-too-brief experience with non small cell lung cancer, you should. Once I picked it up I found it difficult to put down.

Part of what makes this book so special is that Paul was a physician–a neurosurgeon–and so perhaps had a leg up on most of us in that he was able to immediately distance himself from the disease with a dispassion that is difficult for a layman. I had to work very hard to not take my own lung cancer personally, but Paul was able to come to a place of acceptance/grace with remarkable speed, and this lends his telling a particular elegant universality.

When Breath Becomes Air was preceded by an essay by Paul in the NYT that garnered a huge response from readers, ultimately leading to a book deal. There was a lot of buzz in the lung cancer community prior to publication of When Breath Becomes Air, in part because some of my friends and peers were personally acquainted with the Kalanithis. Aside from the pre-publication chatter my own introduction to Paul’s book was this touching essay by his wife Lucy, which also appeared in the NYT. I kind of fell in love with Dr. Lucy Kalanithi after reading it and have been hoping for some time that I would have the opportunity to meet her.

Linnea, Lucy and Diane

Linnea, Lucy and Diane

Well a couple of weeks ago I got my chance, as the Harvard Book Store sponsored a conversation between Lucy and Neel Shah, an assistant medical professor at Harvard Medical School. The venue was the Cambridge Public Library and my friend Diane and I (in true fangirl fashion) got there super early with seats front and center. Better yet, before the event started I had returned to the lobby in order to refresh my parking ticket just as Lucy was arriving. She recognized me from social media and came right up to say hello and gave me a great big hug. Now I was smitten.

Once the event got under way, Lucy read some passages from the book, conversed with Neel for a bit and then took questions from the audience—many of whom were medical students. Some of the questions were of a truly diffuclt nature, yet Lucy was unfailingly warm, patient and kind. Afterward a long line formed for autographed copies of the book, and Lucy took her time with each and every person. A physician herself, I can only imagine that she brings the same care to her practice.

Read the book, and better yet, if Lucy Kalanithi comes to your town, go!

By its cover

2016 began rather inauspiciously at a Great Gatsby themed New Year’s Ball. Held in a gorgeous old church, the night looked very promising. However the venue was poorly heat, the drinks insipid and the music far too loud. My grumpiness just made me feel old–not how I wanted to ring in a new year. We left a few minutes prior to midnight and when home I collapsed on the couch with my laptop. I intended to check a few emails before heading to bed but somehow got sucked into a site with before and after plastic surgery photos. Before too long I was looking at photos of Courtney Love. From bad to worse!

Fortunately I had some solid plans for the following day as I was preparing a meal for seven close friends. I’m still a little rusty when it comes to cooking and entertaining–my time management skills are way off–but I dove right in. When it comes to socializing, dinner parties are my absolute favorite. There is something about a table that is a great equalizer as conversation seems to both flow and include all.

I received a number of wonderful gifts that evening in addition to the company of dear friends. A beautiful centerpiece, a patron saint (never can get enough of those), the promise of some art (again, never enough). And a special gift from my friends Machiko and Koichiro; wrapped in indigo cloth. Tucked inside were two little wooden boxes filled with chocolate candy made by Machiko. Underneath that was another package which when opened revealed an onionskin envelope containing some mat board that had a little window cut in the center with a red tongue of paper attached–it reminded me of the advent calendars of my youth. Koichiro instructed me to open the little window and inside was a perfect, tiny platinum print of one his extraordinary photographs. I was so touched and shared with him that just the day before I had thought to myself that one day I would own a Koichiro Kurita (he is an amazing artist collected worldwide, with a photo in the Tate Museum in London). Now my year was looking up.

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This past week I made a point of engaging in all of the activities I wish to focus on in 2016. I roasted a chicken and later made soup; today I will bake some homemade granola. I walked, read, took and edited photos. I opened an instagram account–you can find me under linnoline. I ordered some canvas as I am all set to start painting again (yes!). I wrote (Click here for my latest post for CURE), made plans to get together with some of my lung cancer peeps, and began preparation for my next advocacy venture (DC in March with the American Lung Association). I participated in open studios with my vintage clothing shop–soon I will have an instagram account for that as well. On my to do list–yoga and maybe a gym membership–I’m not going to take this cancer thing lying down.

But back to covers–a highly anticipated book is about to be released–When Breath Becomes Air by Paul Kalanithi. Dr. Kalanithi was a young neurosurgeon with a gift for words who sadly contracted lung cancer. In the months after his diagnosis he devoted a great deal of time to working on his autobiography. After Paul passed away his wife Lucy, a physician as well, helped bring his book to completion. She also penned a poignant essay about love and grief for the New York Times that brought me to my knees. It is uncommon to have the perspective of patient and physician in one telling, and although I am certain it is going to be a really difficult book to read, I plan to do so.

Straw houses: feeling a bit blown away…

I’m in a funk. The kind of piss poor and discouraged frame of mind that has left me wondering just how much more I can handle.

Of course, I know exactly how much—whatever life throws at me. In fact, I’ll borrow a quote from an article in yesterday’s NY Times (and originally quoted from Samuel Beckett): ‘I can’t go on. I’ll go on.’ The beautifully written opinion piece from which I snagged the Beckett quote was composed by Dr. Paul Kalanithi, chief resident in neurological surgery at Stanford University. Diagnosed with advanced lung cancer at the age of thirty six, Dr. Kalanithi has been learning how to navigate the tangible (statistics) versus the intangible; hope. You can read his thoughtful and moving commentary at this link: How Long Have I Got Left?

It’s cold, windy and dreary outside. At times like this it is my habit to note how happy I am to have a home. Only, right now I kind of don’t. Which is not to say I’m homeless. I’ve been temporarily evicted–make that evacuated–from my own apartment. A week ago I traced an unsettling dirty foot smell to the utility closet. There was standing water on the floor all around the hot water tank. I sent an email to Mark, the wonderful maintenance man by day/sometime drag queen by night. He called me within an hour (leaks are the chest pains of the world when it comes to apartment triage). His thinking was that it might be a loose gasket in the garbage disposal, as the sink was directly adjacent to the utility closet. He said he’d come by in the morning.

The next day the floor of the closet was dry. I ran the disposal, but no water appeared. I took a shower–to test the water heater. Again, no dampness. And then, just to be thorough, I started the dishwasher. Bingo!

Long story short, the dishwasher had a cracked drum which had obviously happened prior to or during installation. What may have started as a slow leak (clearly unnoticed by prior tenants) was now a gush. And bleeding up the drywall behind the dishwasher was mold—the black, nasty kind.

I was calm at first. Took myself to Five Guys and had a burger and a think. I followed that up with some internet research on black mold; some of it quite alarmist. The most reasonable source of information was from the EPA and CDC. I have a known allergy to mold and after a bit of reading I concluded that I was showing signs of acute exposure, as my eyes had been red and irritated for weeks and there was a rash on my wrists as well. And, of course, I’d been coughing. Clearly my lungs were at risk. Everyone involved quickly came to the same conclusion–I’d need to vacate my unit while the mold was remediated.

Fortunately there is an empty apartment in the lofts; a showroom of sorts and it is equipped with an airbed. I went back to my place and grabbed some clothes, sheets, a towel, a plate, a cup, glass, fork, knife and spoon. My teakettle and my laptop. Medication. I turned the forced air heat off and Mark and I plugged in some electric heaters. Jim from Servpro came by. He assessed the situation making use of a cool little device that picks up the temperature differences in moisture, and then he made his recommendations. The area around the mold would have to be contained within a ‘tent’ constructed from strapping and plastic sheeting. Servpro employees would then suit up before removing the kitchen cabinets and replacing two sections of drywall. Two big air scrubbers were plugged in and I said goodbye to my stuff and decamped down the hall.

That was a week ago. The air intake for the furnace is located just behind the moldy wall and as indicated by air quality testing, the heating vents were pressure cleaned. A natural product made from botanicals (Benefect) was fogged throughout the unit. Today, the drywall was replaced and the wall repainted. New cupboards and a dishwasher have been order and will be installed as soon as they arrive. I hope to be back home within a couple of days. 

Of course, I’ve got more on my plate/mind than housing. Tomorrow I have a chest CT scan as a follow-up to an appointment with Dr. Shaw two weeks ago. At that time I learned that I do not qualify for the trial of the new ALK inhibitor, PF-06463922. There is a requirement that your last treatment was an ALK inhibitor and you showed measurable progression while on it. The fact that I had chemotherapy after coming off of LDK378 means that I am ineligible.

As a patient, I struggle sometimes with the rigor that is part of a clinical trial. The need for clean data (intrinsically related to FDA regulations) mandates a strict protocol for drug trials. That doesn’t always leave a lot of wiggle room for what might seem like compassionate and humane clinical decisions.

I have a friend who is also unable to qualify for the PF-06463922 trial because the tumors in her lungs have responded so well to treatment. However, she has numerous brain metastases and PF-06463922 is rumored to be effective at treating brain mets. In the strangest of catch-22’s—the current lack of cancer in her lungs means that there is no way to measure the effectiveness of the trial drug on thoracic neoplasms and therefore she is not a suitable subject.

There is a required two week washout period (again in the interest of clean data). This is tough, as many if not most patients with ALK mutations experience a flare of disease when coming off of ALK inhibitors. Again, I feel torn between the future (FDA approval) and the present, the urgent need of patients with ALK (and ROS-1) mutations for effective inhibitors.

In my case I will likely go back on Crizotinib, now marketed as Xalkori and available by prescription (so this time I, or my insurance, will have to pay for it!). Once I’ve shown progression, than I can get back in line for PF-06463922. So, it’s a toss-up. I hope the Xalkori is again effective for a sustained period of time, but I also don’t want to lose a chance to get on trial.

I’m feeling frustrated, for certain. On so many levels. I have been living an unsettled life for some time now. But, I continue to have much to be grateful for. A caring and responsive landlord. My amazing oncologist. And my innate tendency to persevere.

Blow my house down.