Category: Spirituality & Eternal Mysteries

Last night, Caitlin was stable but at 4am we woke to the news that her left leg, site of the new arterial cannula, was swollen. They couldn’t detect any pulses in the foot. Her leg would soon be in danger if they didn’t act. At 5am she went back into the OR to receive a fasciotomy–they would make cuts to the fascia on either side of her calf to release the pressure.

It was successful, but two hours later, they weren’t detecting pulses again and they had to do an adjustment. They’ve been checking the leg every 30 minutes. So far, so good.

She’s mostly sedated, but sometimes she swims up and when she does, she gets agitated. It’s clear that she’s alert. She pointed to the breathing tube in her mouth. Then made the writing motion. We gave her the white board and she clearly wrote, Transplanted?

It broke my heart to say no, not yet.

(They tell her what they are doing before each procedure, but of course, with the anesthesia, she forgets.)

She began to write more, faster and faster. It was hard to make out the words, but we saw a couple of angry ones: “mistake, fucked-up.” Her oxygen saturation levels started to go down with her agitation so we had to take the white board away. She’s been asleep since.

Here’s a thing that gave me some chills, though. When they first wheeled her to the OR to do the fasciotomy on her calf, I decorated her ICU area a bit. I hung some Christmas lights above the bed area.

I hung personal photos on the wall.

Jess, above, on the left, is one of Caitlin’s most beloved friends. They share a close, close bond. That “I Love You” card is from her. Inside is the kind of letter you save forever.

Jess recently went through a year of dealing with a complicated case of breast cancer. (www.kenyahandlethis.com) Right now, she is in India, on a long-planned trip. She wasn’t going to go, but Caitlin said, “You got through your cancer, and now you’re free. You can travel. Go!” Jess decided to go but said that she would carry Caitlin with her. She’s been texting me the entire time she is there. She’s been wearing a bindi (red dot) on her third eye, for Caitlin.

When I opened my Whatsapp to send the above photo to Jess, I saw that a couple of hours earlier, Jess had sent me this text.

I did.

—-Maryanne, with Nick

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

–Caitlin

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https://www.youtube.com/watch?v=SJCTgtDU-74

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.

–Kitten

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!