DECEMBER 6 — Tiger, Angel

Thank you so much for the outpouring of caring. Reading all the notes made me teary and grateful for all of the wonderful people in my beautiful daughter’s life. I’ll try to update every day, but sometimes it might be hard.

Things are changing quickly. After a traumatic couple of days, Caitlin was relatively stable in the ICU yesterday. Late last night, I even texted a simple “things are good” to a few people.

But part of Caitlin, I think, believed that she “lost control” over the weekend, and caused herself to end up on ECMO. Yesterday she was trying to do everything she could to control her situation, control her life. She was talkative, questioning, in charge and speaking her mind, and also quite funny.

She’s always been her own advocate, but she pulled no punches.  When someone did something wrong: “You should have known. Don’t do it again.” “I usually say please and thank you but I can’t waste the breath.”  To the attending ICU doc who was part of the  ECMO procedure: “I like you. You’re good.”  To the annoying resident  who started to examine her: “You just touched your hair, change your glove.”  To the nurse last night: “You’re good. I bet you’re a Capricorn.” “I am,” he said. “I bet you’re good with money.” “I would be if I had some.”

But she wasn’t herself, spoke in a flat, blunt, odd way, and that was beginning to alarm me. Still, I reasoned, she had been through a lot. I hoped she would sleep and come back to herself. She did not sleep. Instead, she became increasingly hard to talk to and would not stop talking. She took my new brown notebook and began to write, constantly—- ideas for her care, new plans, instructions for all of us, lists, trying to account for every day, every hour. Her heart went into SVT again, and she had to be shocked again. By 4am, she still hadn’t slept and was no longer making sense. It wasn’t even like she was Caitlin.

Sleep deprivation on top of trauma. What a combination.

We had promised her we would stay close to her the first night, and we did, but by 5:30 am it was clear we were doing more harm than good. Nick went to sleep in the family room, where I’d managed to get about 6 hours “rest” on a chair. I went home and showered. I was almost back to the hospital when Nick said she still hadn’t slept and was still writing as fast as she could in the notebook and that the team thought it best we not see her for a while.

We talked to the attending about the fact that her condition was no longer stable. We talked about options. Shortly thereafter, the attending called us back and said the team had decided to intubate her. That allows her to breathe on a ventilator to rest her body/her lungs. Tomorrow they will put in a trach (which she would have likely gotten after transplant anyway.) The trach lets them have easy access between her body and the ventilator, and access to her airways. She’s having trouble coughing, so this will help. Tomorrow, they are also going to do a bronchoscopy, where they go into the lungs and clean them out. None of this is ideal but it’s now necessary, and it’s common, and it saves her life for now.

A while later, her wonderful nurse called (I need to clone this nurse) and explained that Caitlin was finally resting but told me, with honesty and compassion, about how out-of- control and combative Caitlin had become. I’ll spare the details but basically, the kitten had become a thrashing, panicky tiger. Erin, God love her, said, “Right before sedation, I told her, ‘Caitlin, I don’t care what you say or do. Right now, I’m going to save your life.'”

And that seemed to get through to her.

Now, on the vent, she can be a bit more sedated, and as comfortable as possible… and hopefully her new lungs her surgeons have promised will be inside of her soon.

I want to weep with gratitude for this hospital, the only one in the country that will accept such high-risk transplants, the people other hospitals have rejected because the transplants might fail and mess up their shining success statistics.

The good news? Remember yesterday I wrote about that other family from MA? The young CF woman had also been intubated and on ECMO and had even been on dialysis before transplant. Well, last night I went up to the terrible cafeteria because I was desperate for something to eat and there they were! The mother and daughter, the daughter on her feet, walking around !  3 1/2 weeks after this same trauma,  after transplant. I felt like I was seeing an angel.


JULY 27–Coincidences, 1


I’ve been meaning to write down a bunch of coincidences for a long time. I’ll start with this most recent one.

We are home, as most know. We escaped Pittsburgh for a few weeks. It’s been strange but great to be back.

While here, I was reading an old journal from 2010. Back then, Caitlin, her friend Alyssa and I had had some “soul readings” done. Each of our readings was completely different, quite uncanny, and whether we believe in the idea of souls or not, what I will recount was interesting. From my journal, 2010:

At the end of Caitlin’s reading, during which she had revealed nothing about herself or her beliefs, she told the reader about recurring “Nazi” nightmares she has had for much of her life.

The reader assured her that these dreams did not mean she had been a Nazi. “You could not be bad! You had a life in that time, but it wasn’t Germany. It was Czechoslovakia. You were a musical prodigy, literary, from a cultured family. You were killed at age 11.” Then she asked, “Did something happen to you in this life at 11?”

The whole time Caitlin was telling me this, my entire body was full of prickles and I started to cry.

Caitlin said yes, and the woman said that often, a soul will reenact an earlier trauma, at the anniversary age.

When Caitlin was 11, she was very ill and spent much of the year in Children’s Hospital. She had surgery to remove part of her left lung, which had been ravaged by an infection. She experienced a bunch of complications that necessitated a second surgery. There were more complications. We feared we would lose her.

The musical prodigy part was also interesting because when Caitlin was young, she read music so effortlessly that her music teacher thought she practiced all the time. She never practiced (the lazy sod!)!  In fact, her whole soul reading had been about musical lives — she had once been someone who wrote patriotic battle tunes to send troops into war, which had supposedly been a great job.  The reader said that in this current life her soul had begun to experience magical thinking regarding music, i.e., if she pursued music, something bad would happen. Her soul type couldn’t reconcile the pain associated with music — writing battle hymns, though it had been a respected job, meant being a part of war. Once her parents were killed in a concentration camp, it ruined music as a calling.

A page later, in the 2010 journal, I wrote:

So, just to do it, I googled “pianist, child prodigy, Czechoslovakia, killed.”

And the first hit was about a book about 1940s musicians, “Music in Terezin, 1941-1945.” Google had highlighted this passage: “Her family moved back to Czechoslovakia where the five year old Edith started her musical studies. As a child prodigy of eleven…”

“Beyond the Border of Love” was a short story I had recently published in the North American Review. It was about a musician named Edith.

Now, years later, rereading the 2010 journal, I recognize “Music in Terezin” as the book I have been using for research for my new novel! I did not remember that I had heard of it prior to this year (2016.)


So after I wrote this post this morning, which Caitlin did not know about, I went into her and she said, “Oh man, I had horrible nightmares last night!”

“So did I,” I said. “I dreamed we were packing the car for Pittsburgh, then we realized, Hey, we don’t have to leave yet!”

“Ha,” Caitlin said. “You don’t know nightmares until you’re dreaming you’re traveling down the River Styx. And I can’t remember if I dreamed about it a few weeks ago. What if it’s a new recurring dream?!?”


Caitlin remembers: “The reader asked if music was important to me.  It was hard to answer.  From an outsider’s view – I am not a musical person.  That makes me sad.  Inwardly…I don’t know how to say that music is everything to me….it is my life’s blood, the only thing that can uplift my soul.  I don’t even play an instrument though.”




JANUARY 11–Changes

Screen Shot 2016-01-11 at 5.55.15 PM

A few weeks ago I sent the email below to my beautiful friend Monique, with whom I share a wonderful ongoing conversation about everything, often including music, via text, email, and whatsapp voice messages.  We talk about how a song can embed itself into a feeling hugely disproportionate to its merit musically – making you sad, even angry.  How deeply you can hate hearing a benign little song, all because of when you first heard it…either over and over…or once, during some awful time. And yet some precious, rare songs never, ever get old.  They always lift you up, change your day, track the course of your life.  We talk about how catching a song you love on the radio is always better than playing it for yourself, and how sometimes you can go from totally disliking a song to loving it, finding something new in it, and having to play it over and over.

There is much more to this conversation about music, but the email I sent her a few weeks ago was about my ongoing list of lyrics.  Some lyrics stand out not as the most famous lines, or even as singular, cohesive ideas, but as the part of the song that just makes your heart soar, or break.  These lyrics don’t behave like normal words … they fail to incite feeling without the song itself — that is the magic of music.   You will see that when you see them typed out in my note to Monique – they are lovely but static. It is the music, and David Bowie and Freddie, that give you a shiver, choke you up…whatever is happening, it ends up transcending words. Today, in the flood of Bowie tweets and posts, I heard the isolated lyrics for the first time and I felt that awe that I sometimes feel with really original music — a combination of, “how did someone even think to write this?” and “thank God they did.”  Below is Freddie Mercury’s performance of the song in July 1986 at Wembley Stadium – it’s famous and it’s wonderful.  It doesn’t include  Bowie, but it couldn’t have existed without him — he brought magic to music like no one else — so I think it’s OK.

RIP Ziggy Stardust




DECEMBER 25 –Update from the Grinch

ruby slips

When you are waiting for transplant, you wear a lot of lounge wear. I wear slippers every day, and after two years on the list, my feet are softer and smoother than ever.  My wardrobe is an alternating cycle of lounge-pieces, some raggedy, some for when ‘people’ are visiting. I’ve been wearing the same pair of worn-out, beige L.L. Bean slippers for years.  A couple of months ago, I bought the red version.  I’d been wanting a pair for a few years now, but they sell out around Christmas.  So in October — because right now I have the foresight for these kinds of things — I thought, “Oh, I will buy these now, and these will be my after-transplant slippers, when I am in the hospital.”

When the new ones arrived, I wanted to wear them …  but I left them in the box and put them in the corner of my room.

The next part of this little Christmas post is about astrology.  It’s hard to say “I believe” in astrology.  I don’t know what I believe in, fully, when it comes to religion or spirituality.  I believe in myself, and in the love of my family and friends, and in the idea that being kind and true feels like the most important thing in life. But I like astrology, it’s fun.  I have been learning about it since I was a tween — and after 20 years of it, you notice patterns that are hard to dismiss as coincidence.  So I pay attention to it; I’ve had my chart read.  I notice what happens, and what doesn’t.  For example, Jupiter was in Leo, my sign, for a good part of my waiting time.  Jupiter is the “giver of gifts and luck.”  I thought for sure this meant my transplant would happen. Jupiter was in Leo for an entire year — there was plenty of time.  But Jupiter came and went.  It’s not like I was counting on a planet, roughly 400 million miles away, to give my tiny speck of a body a break, but how can you not think of that, once you’ve heard that kind of thing?  I did get a lucky break though.  In May 2014, after being listed for one year, we found out I had been unknowingly growing something new in my lungs.  Had I been transplanted before we found it and treated it, it would have put my new lungs at a much greater risk.  You can’t always get what you want, but….as the song goes.

Today, December 25, all the planets in our solar system “go direct.”  This means they are all moving toward us, instead of away from us (when they would be retrograde). This is sort of rare – and usually happens about once a year. It’s a time of opportunity; supposedly the channels are all open, ready to facilitate whatever comes down the line — everything is unstuck.  Oddly this never happened in 2014 — it was an off year.  In fact, they haven’t all been direct like they are now since January – February 2013 – a full two years ago.

I’ve been a grinch all week, but it lifted today, as I knew it would eventually.   I am always comforted by knowing the tide will change, even if the tide is just the ebb and flow of your own mood.  Maybe it is the stars doing it, maybe it’s the idea of the stars. Maybe it comes from inside you the whole time.  However you get there, it’s like a relief, and if you hang on long enough you’ll get a little glimpse of clarity, and you move forward an inch, or a millimeter, or a mile.  Suddenly I felt silly for keeping those slippers in a box. It seemed ridiculous.  They were RUBY SLIPPERS for goodness sake, and I hadn’t even realized it.  I gave them to myself for Christmas, this morning. I can always buy new ones after transplant…but hopefully I’ll be buying sneakers instead.  You have to believe in magic sometimes.  There’s no place like home.


Merry Christmas to everyone, whatever kind of year you are having.  I hope it’s good, and if it’s tough, believe in yourself to get through it.  And for my dear little buddy Jess, who is facing her own breast cancer diagnosis this Christmas – I hope all the people who have been so kind to me, and read this, can send some of your goodness her way.  She is a light of a person, a funny little sparky bright light in my life.  I know she will get through it, but we all need help.  Here’s to 2016 for both of us, for everyone!

APRIL 24–“The timeless, repetitive waiting.”

michener(1)Well, today marks one year on the transplant list. On April 24, 2014, Caitlin wrote a blog post about what was ahead. And what was ahead has turned out to be a very long wait.

I was telling a friend that it reminds me of the beautiful show and Pulitzer Prize-winning book, (TALES OF THE) SOUTH PACIFIC. During WWII, a group of servicemen and women in the South Pacific wait to be called to war. The pace is languid, with many beautiful moments. Then, when the waiting period has begun to feel eternal—BAM!—the fighting starts, the planes take off. Everyone goes into action, the languid days over forever.

We’ve had some lovely days that we will probably, in some future time, look back upon with longing. But right now, Caitlin is uncomfortable; everything is a struggle for her. So we are ready, and hoping.


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MARCH 24–Synchronicities

Polish Hill, Pittsburgh
Polish Hill, Pittsburgh

Synchronicities—so many of them. Including the fact that Caitlin’s from-Maine boyfriend’s grandmother grew up in Pittsburgh. Today we discovered “Polish Hill,” where Andrew’s great-grandfather owned and operated a drugstore, right next to where that red awning is.

Caitlin’s great-grandfather in Massachusetts was also a druggist.

Our address in Boston is Staniford Street, #16.

Our address in Pittsburgh is Stanwix Street, #16.

The hospital here is bounded on one side by O’Hara Street and on another by Euler (the name of Caitlin’s doc at home, though with different spelling. Same pronunciation.)

The list goes on.

Today marks 11 months on the transplant list. Andrew has been away for a while, visiting his very beloved grandmother who fell and has been in and out of the hospital. Today we took a bunch of photos for her, and hope she’s doing better.

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MARCH 15–Winter to Spring

By Stephanie Danforth
Art by Stephanie Danforth

Today marks three months here, but this beautiful painting, which our wonderful friend, Stephanie Danforth, recently painted and sent to Caitlin, reminds us that spring is imminent, and that every day spent waiting means one fewer day to wait.

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NOVEMBER 19–Saturday Afternoon


Last weekend, something happened that made me starkly aware of just how much someone has to lose in order for us to gain.

Our house is on a busy road, on a bad corner. Long ago we erected a large fence along the front. We sound-proofed our walls. We turned the focus of the house toward what was tranquil and pleasant: the yard and gardens, the river and trees.

Late on Saturday afternoon, Andrew was with Caitlin in Boston and I was home. I was on the phone with a friend, talking about our imminent move to Pittsburgh, and telling her how I had heard that someone at UPMC had gotten “the call” that day. As I talked, I wandered into the front of the house. Over the top of the fence that separates us from the busy road, I could see a fire truck.  I dismissed it as a false alarm—-they often happen, and in fact, a neighbor’s chimney had been pouring smoke a few hours before.

The next morning, we heard the news.  A man had taken our corner too fast. He hit a tree head-on, and died on impact. Our road had been closed for 4 hours, but because of all that insulation we put in years ago, we spent a quiet evening just a few feet away, blithely unaware.

For every lung transplant to happen, someone has to lose his or her life.  That is the stark reality of the situation and there is no avoiding it.  As I have mentioned previously, Nick’s beloved brother Willie died unexpectedly, years ago. The only positive thing that came out of that tragedy was that seven people got another chance at life. Caitlin has a friend who is seven years post-transplant. Every year, she sets a new goal for herself, to honor her donor. Saturday’s accident was a reminder that we have to try to get through this time with as much gratitude and integrity as possible.

As Caitlin says, “There is no reconciling the trade, of life for life, and no justifying it.”