MARCH 4 — Floating in a Tin Can

3414
March 4, 2014   Boston

I happened to be looking for a particular photo last night, and came across these ones from exactly two years ago. March 4, 2014. Caitlin had been on IV meds for a couple of months, and after a long stay at the Brigham, it was clear it was time to head to UPMC to complete the lung transplant evaluation that had begun, proactively, in 2010 while she was still ‘well.’ The coordination of the transfer, hospital to hospital, had hit one snag after another. A week of snags. Finally, late on the night of the 4th, an ambulance brought us from the Brigham to Hanscom Airfield where we waited for the medical jet that was to bring us to Pittsburgh.

medjet
The tiny med-jet.

The night was cold. The jet was late, due to an emergency in Florida, and when it arrived, it taxied in so much tinier than I had expected. The crew—2 pilots and a nurse—swiftly got into action. They were cordial but all-business, bundling Caitlin into the rear with oxygen and monitors. After the bright, organized ambulance, the interior of this working jet, cluttered and dark, was a shock. I looked at it and thought, “You can’t get in that thing. You have to get in that thing.”

They stuffed me into a pop-up seat behind the pilot and we took off.

It was close to midnight, long past the time we would normally be asleep. I could see the moon through the cockpit. It was a waxing crescent moon, I remember that. But the rest of the trip is just a sense-memory of our bodies hurtling through darkness, the deafening noise of the engines. We were heading to a new hospital. Caitlin had finally reached the point where she needed a lung transplant. We didn’t know what was going to happen.

I wrote, in the last post on this blog, about my thoughts at that time. “Okay, let’s get this over with so life can get back to normal.” I’m glad I didn’t know I would be writing this post, here at my Pittsburgh desk, two years later, the big event still ahead of us, the details still unknown.

Two years, March to March:

alendar

So many days. Each day thinking, Maybe today. Have to be ready.

Caitlin’s been remarkably resilient, but as it gets tougher, physically and mentally, it’s also tough for people to understand exactly what’s going on—-with our situation, with her health. The other day, I posted a photo of her looking pretty darn great, laughing and holding Henry. But that’s the nature of both cystic fibrosis and photography. The looks of things can fool you.

Yesterday, the cabin fever was bad. We had to get out of the apartment, go for a little drive. We drove aimlessly, with no destination, until I noticed that we were close to a place called The Society for Contemporary Craft. I’d been there a couple of times, and pulled in. It’s a space that consists of a rotating art exhibit on one side, and artwork, for sale, on the other.

The exhibit, this time, was called “Mindful: Exploring Mental Health Through Art.”

Inside, the show was all about depression, breakdown, attempts to self-heal. “Mom,” she said, half-serious. “Did you bring me here on purpose?”

I laughed and said of course not.  She didn’t really like the exhibit — not her style. But it was something to do.

The exhibit concluded by having you follow a length of string down a hallway to an alcove, where the overhead criss-crossing of string became so closed-in as to be claustrophobic, and where visitors could give voice to their own methods of coping by writing their thoughts on squares of paper and tying them to the resulting spider’s web.

Shall we do it? Of course.

“This is one that goes through my mind a lot,” she said, writing.

sb

(Samuel Beckett.)

UPDATE:

Interesting coincidence we discovered after I published this post:

So last year, we moved from a “temp” apartment to a more home-like condominium here in Pittsburgh. The real estate agent was a lovely woman who told us that her daughter had a heart transplant years ago, was now in her 20s, and an accomplished artist. That seemed like some kind of good sign.

When Caitlin wrote on the slip of paper at the mental health art exhibit, I tied it to the string and tucked it into a tiny print of bananas that happened to be hanging there, which I admired. Turns out the banana art is a reproduction of a screen print by Gianna Paniagua, the very same artist. Wild.

 

—Maryanne

 

 

JULY 16–Kitten Visits Cats

Visiting Mittens
Visiting Mittens

After her transplant, Caitlin will not be able to be around cats anymore. Which is sad because she loves cats so much! Today we drove far out into the country to a wonderful, no-kill humane society where we spent an hour and a half playing with the cats. Mittens, shown here, was the most painful kitty.  Abandoned by its owner. HOW anyone does that is beyond me. She was so confused by her cage that we let her out 3 times to play with her. So painful to have to leave her there!!  But a wonderful place, doing great work.

–Maryanne

To follow our blog, just click +Follow, down to the right, and enter your email address to be alerted to new posts.

JULY 14–The Unthinkable Transplant, (Linked essay by Caitlin)

Caitlin & Andrew in 2013 Looking Good/Feeling Bad
In 2013: Looking Good. Feeling Bad

In this column for the Cystic Fibrosis Lifestyle Foundation, Caitlin talks about how the word “transplant” always terrified her.

It terrified me, too.

But that’s for another day. Right now, at 8:47pm on Monday, July 13, as I write this, there’s a rainbow over Pittsburgh, and Caitlin’s on the balcony with it.

Read the entirety of her thoughts here: The Unthinkable Transplant

rainbow

-Maryanne

To follow our blog, just click +Follow, down to the right, and enter your email address to be alerted to new posts.

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.

–Maryanne

To follow our blog, just click +Follow, down to the right, and enter your email address to be alerted to new posts.

APRIL 1–Lots of “Months”

Photo: Justin Posey
Photo: Justin Posey

My lighter side loves April Fool’s Day. My literary side loves National Poetry Month. But our beautiful Caitlin has been waiting almost a year for a lung transplant, and what’s most on my mind is that April is also Donor Awareness Month. So click on the photo for a poem that rethinks the way we think about organ donation.

I’ve been a registered donor since age 16–here’s a link to your state’s registry if you’d like to register, too.  http://www.organdonor.gov/becomingdonor/stateregistries.html

–Maryanne

To follow this blog, just click +Follow, down to the right, and enter your email address to be alerted to new posts.

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.

PS: If you want to follow this blog, just click +Follow, down to the right, and enter your email address to be alerted to updates.

–Maryanne

FEBRUARY 24–The Long Winter

At the Heinz History Center
At the Heinz History Center

“Any news yet?”  No, we are still playing the waiting game. Caitlin’s been on the list 10 months today.*  April 24-February 24!  And it feels longer, because it technically has been longer. A year ago today, February 24, we were getting ready for her to be flown from The Brigham to Pittsburgh, and I wrote in my diary: The trip to Pittsburgh begins.
So much was unknown then, and remains unknown.

The last few weeks were up and down because Caitlin caught a cold after months of stability. The cold passed, but she’s been dealing with the inevitable after-effects. There have been some not-so-great days, but right now, things are okay.

In that vein, here is a report on WHAT IS GOOD:

IMG_5285

Puzzles! We are HOOKED on Liberty Puzzles, thanks to our dear friends, the Danforths, who sent us our first. Liberty Puzzles are beautiful, wooden, puzzles laser-cut into fantastical shapes.

IMG_5128

Henry!  Yesterday Caitlin said, “Aren’t you happy he’s here? It’s like a great TV show that’s always on.”

FullSizeRender-1

Pittsburgh! I keep saying it, and it’s true: “Things could be a lot worse.” This is a nice city, with a lot going on.  I happened to stumble upon the opening of the above living art installation the other day. And on Sunday, Nick and I went on a “cello” hike, which consisted of a walk around the city that included tours of cultural venues, and ended with a private cello performance at the Capital Grille. After that, we had a glass of wine at a favorite little place. I usually have no problem playing it cool when I see a celeb, and there have been a lot around here because they are filming a movie, but it was hard to contain myself, I must admit, when right across from us, tucked into a corner, was Diane Keaton. She is just one cool cat. She’s one of Caitlin’s absolute favorites, and I wish Caitlin could have seen her.

IMG_5276

Friends & Family!  It’s been great to have people here. My sister and niece were here, then Diane & Katie and baby Diego. People send notes and Florida grapefruits, and crafts and cookies and flowers, and prayers and overall kindness that we are overwhelmingly grateful for.

–Maryanne

*It’s not uncommon to have to wait so long. Organ donations are not as plentiful as they could be, so please, if you agree that you’d like an organ if you desperately needed one, go on and register with the organ bank, if you haven’t already done so: http://www.organdonor.gov/index.html

 

 

JUNE 29 – A Few Clarifications

photo

* The other day, I posted a #ThrowbackThursday photo of Nick and me on St. John. A few people didn’t notice the Hashtag-Throwback part.  Nick and I are most definitely not on St. John.

* We can’t venture from our home base in Boston. When Caitlin gets called, we have four hours to get to Pittsburgh. This will involve contacting the list of medical jet services that we have pre-arranged. Since no single service can sit around and guarantee that a jet will be available when we call, we have to hope that one of the services on our list will be able to get to us within the allotted time.

* Once we are in Pittsburgh, if all goes well, we will be there for two to three months. (You  can’t go home until you are definitely stable. And then, for the first year, she will go back to Pittsburgh for evaluations every two months.)

* You know how once you get used to something, it starts to feel normal? Well, that’s us. We are not as somber, sad, or serious as people imagine. On the contrary, almost every day has a ridiculous amount of humor in it. One of our latest pastimes is taking videos of the way Henry reacts to the word LUNCH.

* When people who haven’t seen Caitlin lately do see her, they inevitably remark on how great she looks. Now that she’s not acutely ill, she does look a lot like normal Caitlin. That’s the irony of CF, though. Unlike some diseases, the effects are mostly invisible. For more information on CF, check out http://www.cff.org.

* Caitlin has done a few needle felting sculpture projects–quite out of the blue–and she is rather good at creating the most charming little creatures! (Needle felting is the process of sculpting/interlocking wool fibers by stabbing the wool with a barbed needle.)  

* Happy July, everybody.  Summer! Boston is not a bad place to spend the summer, and it’s not as stifling as St. John in July.

–Maryanne

May 27 – The Start of Summer, & Waiting

photo

We’ve been getting  a lot of questions that make us realize that the average person doesn’t realize just how scarce organs are. But scarcity is why people wait so long, and generally have to be far sicker than they need to be before surgery. Last year, donations of all organs were, unfortunately, down in the United States.

I’ve been an organ donor since the day I received my first driver’s license at age 16. Donation has always made complete sense to me, and now that we are on the needing end, I can’t imagine the trauma of knowing that there would be no hope if transplantation was not an option, if organ donation did not exist.

Many years ago, we lost Nick’s brother Willie to a brain aneurysm. A young man that stood tall and seemingly healthy was with us one morning, gone by evening.  Willie had a one-year old daughter. His wife was pregnant with their son. The only positive thing that came out of that awful tragedy was that seven people were saved and helped via the gift of life from Willie.

From the Mayo Clinic, here is some comforting talk about the myths of organ donation: http://www.mayoclinic.org/healthy-living/consumer-health/in-depth/organ-donation/art-20047529

You have to make a bit of an effort to be a donor, but only a bit. Here’s how:

❤ First, sign up with your state’s donor registry:  http://www.organdonor.gov/becomingdonor/stateregistries.html

❤ Designate your decision on your driver’s license.

❤ Tell your family about your decision. It’s important that they know your wishes.

❤ Tell your physician and friends.

❤ Include donation in your will, etc.

The first step is vital, and you can do it right now.

–Maryanne

 

 

APRIL 24: Update

photo taken at Rodin Museum, June 2012
photo taken at Rodin Museum, June 2012

It is Caitlin here. I wasn’t planning on writing on this blog but why not? “I’m not a blog person,” I said. Well…who is? Who cares? Why spend any time proclaiming what you are or are not, and what you don’t like? There is value in that kind of thing, I know, for humor…but right now all I can think about is everyone I love and everything I want to do. I am so grateful for all my friends and family, for Andrew, and for my parents who continue to do anything they can for me.

So..I got listed today! I got my “score” which is 44. 44.2196 actually. It is a higher score than anyone expected — everyone thought I’d be somewhere in the 30’s. 70’s is about the highest usually. It is based on how sick you are, and you technically want it to be higher so you can get transplant sooner. It still doesn’t mean much though, and I could get called at anytime, or I could wait; there is really no way to know. When there are lungs available, the calls are initially made based only on height/size and blood type. If those match up then the score comes into play, and the sickest person gets the call, and so on and so forth. That is a very simplified way of describing it. For lungs it is not a matter of having a set number in line and just waiting. Your score can change too, if you get sicker, to increase your odds of getting a transplant sooner. (All of this came in to play around 2005 when the regular wait list method wasn’t working for lungs anymore.) After getting the call, I could go to Pitt and it could still be a false alarm. This happens a lot. Once they get to see the lungs in person they may decide that they aren’t a good enough fit, and I come home to wait again.

I read something today somewhere, something that described transplant and waiting. I don’t even know where I read it, 1 out of the 100 things I can get carried away clicking and reading. It said, “The ride of the wait is like a Six Flags Roller Coaster. Attitude will get you through most of the tough times. Believe in yourself and your inner strength to survive and NEVER give up.

Believe me, these words aren’t complex, I know, but they jumped out of the page, a simple emphasis at the end of paragraphs of dry informative material. No amount of rational thinking in the world can do for you what this basic instruction can, whoever wrote this knew that, and got right down to the heart of the matter. There is no escaping that this is a risk, and we are all taking the leap – the surgeons, my family, me. And all of it manifests because someone else has to die. There is something inescapably raw about it. And at the core of it, once you have educated yourself, tried your best, and hoped the science will all work out, all you can really count on is…never giving up.

–Caitlin