kittenupdates

DECEMBER 25 –Update from the Grinch

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!

OCTOBER 24 — A Year & A Half

Caitlin in Boston at our favorite spot (Sorellina).

So, an update. Today marks 18 months on the waiting list. A year and a half. It’s a longer-than-normal wait, no question.

Caitlin had her biannual transplant appointments this past week. There is a new surgeon here (there are 3 on the team), whom we met and really liked. Everyone on the transplant team seemed to be conscious of assuring her that she wasn’t being forgotten. They are obviously accustomed to dealing with a lot of frustration once the wait gets long. This is how it goes, though, and petite women like Caitlin are the hardest to transplant, because the chest size is small.

However, she’s very stable, and in good shape for surgery! We do hope it will happen during a stable time like now. Every day waiting is another day closer… right?

We are fortunate to know a few other CF people, Caitlin’s age, who’ve been through all this and are on the other side, doing really well. It keeps us going.

The unexpected trip home was incredible. Surreal and wonderful. We stayed for two weeks. I cannot convey how thrilled I was to see the star-filled night sky again. Caitlin saw friends and enjoyed favorite Boston sushi she’d never thought to eat again (no sushi once immuno-suppressed.)

For me, two best moments: One night, Nick and I were outside cooking on the grill, and my favorite, autumn Indian flute music was playing. The wind through the branches was perfect, soft. I was really home!! I just closed my eyes and held onto it a moment.

The second was the night that Caitlin and I sat on the back step and watched the entirety of the beautiful red lunar eclipse.

Andrew drove back with us and stayed for a good stretch. He and Caitlin discovered the beautiful, large Frick Park here, with accessible hiking trails, and visited it a few times.

Someone told me that fall lasts two weeks here, and it seems true. The skating rink in PPG Plaza is nearly installed, and the holiday lights are up. Holiday festivities officially start here on November 20, which is only a few weeks away, I guess. We didn’t expect to see another holiday season here, but we’ll enjoy it. Live trees aren’t allowed in our condominium building, so Caitlin’s getting her wish–a silvery-white, retro fake tree.

–Maryanne

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SEPTEMBER 23–A Reprieve

We haven’t posted since July because there’s been little to say until now. Nothing’s changed for Caitlin but UPMC is having a bit of a crisis—mold in the cardio-thoracic ICU and elsewhere in the hospital that may have contributed to the tragic deaths of some transplant patients.

Until they get the problem under control, UPMC is suspending transplantation. We are going to take this totally unexpected opportunity to go home and breathe a little New England air for a few days. Hopefully, UPMC will be up and running soon, at which point we will come back here to resume our wait.

Caitlin and I have not been home since we drove here on December 15, and she’s feeling well enough to make the trip, so we are thankful to be able to turn a bad situation into something positive. I can’t tell you how much we look forward to seeing that welcoming back door flung wide open by Nick, the reluctant bachelor…. And we can’t WAIT to see how Henry reacts, since he hasn’t been home in almost 7 dog years~~!

We’re grateful, too, that Caitlin will be returning to a safer UPMC environment. And do hope that the mold didn’t cause the deaths of those people. An all-around terrible situation. For more information on the mold: http://www.post-gazette.com/frontpage/2015/09/21/Mold-infections-leads-UPMC-to-shut-down-transplant-programs-at-Presby/stories/201509210177

–Maryanne

JULY 16–Kitten Visits Cats

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

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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

-Maryanne

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JUNE 29–The Update

I’ve been trying to write an update, with great difficulty. A lot has changed; nothing has changed—still waiting—and all the national emotion of the past week left me feeling oddly subdued, not ready to talk about our own issues. But here we go–

One crappy new thing has afflicted Caitlin. She has been unusually hoarse since having a virus in February, and has lost some of her range in her voice. Although she’s experienced laryngitis all her life following colds, she knew this was something different. She visited a voice specialist last week and found out what she suspected: that one of her vocal folds is paralyzed. Both folds (or chords) must meet to properly produce sound or to effectively cough; when one isn’t moving, this can’t happen. There are temporary fixes (injections similar to getting cortisone shots) which she might undergo before transplant for some relief, (but probably not, since she tries to avoid unnecessary procedures). She will have to have the injection soon after transplant anyway — the vocal chords need to be working properly to protect the new lungs — and eventually will have to have the minor but permanent surgery of having the vocal chord enhanced by a permanent procedure. She sounds like she has laryngitis, and she has to speak in a higher register than normal, making it difficult for her to be heard, talk on the phone, etc. Overall, it’s frustrating. The permanent surgery won’t happen till months after transplant, so … that’s another thing our Kitten didn’t need, but which she is dealing with with her usual grace.

The happier news is: we’ve moved! The move has been of tremendous benefit for me and my mental health, and Caitlin really loves the fact that she has more freedom, comfort, and privacy. We’ve a little balcony, and my sister and I fixed it up with a tree and plants, first thing. That little balcony is our summer vacation this year! And not a bad vacation. Pittsburgh is famous for being fireworks-crazy, and it’s home to the famous Zambelli Fireworks. We could always hear them in the old apartment. Now we can see them. We feel very lucky.

And I have a real built-in desk! So no more taking over the dining table. And here’s one thing I’m very very proud of: Last year, on July 1, I vowed to set a timer and write for a minimum of 30 minutes a day. I knew that no matter how busy the day was, I could always squeeze in 30 minutes. I also knew that it would be easy to *not* write during this time of waiting, and that I would end up feeling really bad about myself if I went months without producing anything. I can announce that as I approach July 1, I have not missed a single day AND I’ve managed to eke out a very ugly draft. (But ugly drafts are beautiful, as my writing buddy Barbara says.)

Henry thinks it's ugly, too. — Henry thinks it’s ugly, too.

Many know that Caitlin has been a big part of a tireless effort to save the beloved Prouty Garden at Children’s Hospital Boston. She hated having to miss the gentle protest last week. But now, at a very late hour, the group has the opportunity to work with an environmental law firm that is enthusiastic and hopeful about saving the Garden. Caitlin spent the weekend working with her group as they decided to go for it. They got a GoFundMe account going yesterday, and the group has already made great gains in raising money for the necessary legal fees. I’ve been so proud of her these past months, watching her work so doggedly at this, even at times when she’s been at her weakest.

Donations are so welcome! I can promise you that there’s not much more of a better cause than saving this garden that pretty much saved *us* during the darkest days of her childhood.

Lastly, a small eulogy. Everyone knows how much we love St. John. The highlight of our trips are always our days on the water, zipping around the BVIs. Over the past decade, we always went with our favorite captain—the vivacious, enthusiastic, safe, and professional Captain John Brandi. John and his wife Sue had long dreamed of retiring to St. John, and they worked their asses off to be able to realize that happy dream. They moved down from Marblehead in 2005 and launched Palm Tree Boat Charters. Canceling “boat day” was without a doubt the most depressing part of canceling our annual trip two winters ago, when Caitlin first got sick. And then late last year, a startling post appeared on our Facebook feeds: a sudden announcement, by John, that “due to health issues,” he was selling his beloved boat.

It turned out that back pain that had been niggling at him all year was actually cancer; the world lost him last week. The outpouring of sorrow on St. John has been both wonderful to see and terribly heartbreaking. Everyone loved him, and of course, everyone’s memories of him are wrapped in their own memories of happy, happy days. As I’ve cried for him, I know I’ve also been crying for myself. Some days are just well and truly over, and there’s nothing to be done about that, except to say “onward,” and make these new days the best they can be.

Godspeed, Captain Brandi.

–Maryanne

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DECEMBER 15–JUNE 15. 6 Months Here & We Are Moving

View to the old building from the balcony of the new.

Hard to believe, but we moved here on December 15th. On Monday, June 15, we will have been here 6 months. That day, we start a one-year lease on a new place, just around the corner, with a much better layout for Caitlin. It’s modern but very comfortable, and it will be a lot easier for Caitlin to get around. We do hope we’ll end up “wasting the lease,” and getting out of here long before the lease expires, but at least we’re prepared.

–Maryanne

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Mostly Companion, written by Caitlin

At some point when I was little, my mom and I started referring to one another as our “mostly companion.” It probably grew out of the time I was having surgery when I was 11, and was in the hospital a lot. We would get overly tired, stressed, and…really silly. We were absurdly often at our funniest when things were worst. I guess that is common for people in trying health situations, and it’s a nice silver lining. The other day, in the hospital while I tried to eat lunch, my mom put on quite a show of impressions and we were laughing so hard. The game was to do one small word, look or movement from a movie…not a whole line. Her imitation of Salieri yelling “MOZART!!!” from Amadeus was the best…she has an incredible man-voice that she harnesses from deep within. Oh my goodness, maybe you had to be there.

I don’t write much on the blog, but today is the day to do it. For those of you who know us well, I am so close to my mom that it sometimes terrifies me. Maybe it terrifies her too. I know how lucky I am to have a mom like her, and parents like mine, and our situation — my situation — has made our link stronger, and sometimes that’s scary. We both know that there will be a time, hopefully, strangely, where I am well again and we live apart like typical adult mother and daughter, and we will look back on this time with nostalgia. Right now we are suspended, and we do puzzles together and watch Mad Men and she gives me leg massages, and everything, good or bad, is heightened. Everything makes me cry these days, good things more often than bad — so there’s a lot of appreciating that goes on. But its also draining, exhausting. Living in the moment is a good adage, but like anything, there can be too much of it.

My mom is doing everything for me, she has uprooted herself. My dad is living alone in MA when he is not here, and I know its hard for him in a way I can’t imagine. Andrew is back and forth as well. Here since December though, non-stop, has been my mom. She cooks, does the laundry, listens to me, sits with me in the ER, in the hospital…she even feeds Henry homemade food that she makes herself. Here in Pittsburgh, where she knew no one, she has made friends and found interesting things to do, always finding something to be enthusiastic about. Even writing this now is making me want to be more like her, and I feel even more thankful just putting it into words.

She has somehow found time to write everyday, and has since July 1st, circling the date in red when she is done — she has remarkable follow-through with things. It has taken me over 2 months to gain 4 pounds, and I WOULD NOT have been able to do it without her. When you get evaluated for transplant, part of the evaluation is making sure you have a good support system, because it is so vital to how well you do. This might seem hard to grasp to a healthy person who thinks that ultimately, you can get through anything on your own if you really have to. I am telling you – haha – you can’t. You need people, and I wouldn’t be here without her.

I am also aware on a day like today how hard it must be for some people, who have to be painfully reminded each May that they don’t, for whatever reason, have that relationship. It reminds me again that everybody has some kind of pain, as well as some kind of good in their life, and that none of this is a contest. As hard as it is being sick and being here, my mostly companion and I are having some laughs. There’s probably a lot of people out there with great lungs, and no mummy. Everybody is just trying.

As it usually is when you love someone so much you can’t put it into words, everything I have written here feels inadequate. But most of you already know what a great mummy she is, I am just here to tell you …that she is even better than that, and that I love her so so so much.

happy mother’s day!

MAY 5 — Update

Well, the purpose of this blog is to keep friends and family updated about Caitlin’s health/transplant. We were lucky she’s been so stable for so many months, but she has had a rough week+, and since I know a lot of you would like to keep her in your thoughts during her trying times, I thought I’d let you know what’s what.

Her heart has some issues, like supraventricular tachycardia (rapid heartbeat) and now, pulmonary hypertension that has worsened as the lungs worsened. Episodes have been managed with the right dose of beta-blocker, but about ten days ago, she started having issues. Long story short–a trip to the ER on a Saturday night ended up in a 4-night stay as everyone worked to adjust her dose and get it under control.

She came home last Wednesday and seemed well. But by Thursday she was looking anemic, listless; it was hard to cough and clear her lungs. She was in overall pain. Her sister-friend Katie visited for 2 nights, and was so wonderful and loving and helpful. By Sunday our Kitten was a bit better, although starting to feel new pain in her lung.

We were getting ready to watch MadMen when an evacuation alarm went off in the building here. She had to climb down 10 flights of stairs. (There was no emergency.) It took everything she had, and took away the gains. There was a marathon in Pittsburgh on Sunday, and I would bet that no one post-marathon felt worse than Caitlin did post those 10 flights. She said she felt like her legs had gone through a meat grinder. The pain in the lung worsened and kept her awake all night.

Yesterday at noon, we returned to the ER for fluids, x-ray, CT scan. Last night she was re-admitted to start a course of IV meds, and re-evaluate the heart, which hadn’t completely settled down on its new dose of beta-blocker.

This morning, she reported that the lung pain had eased a bit. They are putting a PICC line in (a long-lasting IV line) at the moment. We’ll see how today goes. The plan will be to do the course of IV meds at home. We are old pros at that.

Thanks for thoughts, prayers, good energy, all of it. She needs deep sleep, a calm heart, weight gain, and a perfect-match lung transplant!

–Maryanne

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APRIL 24–“The timeless, repetitive waiting.”

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

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