for those who didn't know her (and those who did)

I made this video as part of my "tribute" for my grief group.
It's about 17 minutes.
Try hitting play and then pausing to let it load.
xop

Rosina from peter hastings on Vimeo.

Kimo's Rules

first, a couple more pictures I meant to include:




Below is a little thing you see around Kauai; on ceramic tiles and tee-shirts, or framed in someone's kitchen, which is where Rosina and I first saw it.

Never judge a day by the weather
The best things in life aren't things
Tell the truth - there's less to remember
Speak softly and wear a loud shirt
Goals are deceptive - the unaimed arrow never misses
He who dies with the most toys - still dies
Age is relative - when you're over the hill you pick up speed
There are 2 ways to be rich - make more or desire less
Beauty is internal - looks mean nothing
No rain - no rainbows

xo
ph

To the Sea

Rosina's Birthday, February 27

Hanalei, Kau'ai, Hawaii. I often seem to proceed not with a clear plan, but with a simple goal. A night of music, a dinner, some kind of gathering. With the help of improvisation, tenacity, optimism, and a lot of friends, we usually, magically, arrive at the destination. So it seems to be with delivering Rosina's ashes to the ocean here in Hawaii. The original plan was to go out in a boat into Hanalei Bay, but it's February, the water is rough and the wind was strong. It was considered dangerous, and I thought that on a boat, there are a lot of steps of unpleasant before you even approach dangerous, so that was out. No worries. There are no specific rules about this here. Rosina - ocean - Kauai.

Jake, Nina, Will, Sonia, myself, and our Hanalei friends, Gary and Theresa, and Andrea and Rogerio, headed down the road to Lumahai beach. I have a photo of Rosina walking down to the beach that she saw once and said most definitely, "That's me."

2003

But the surf there was huge. It's the beach in the top picture. It was a spectacular show but no one was going in. So after staring at it for a good long time, we headed down to the end of the road to see if we could go around Ke'e beach to an amazing spot at the beginning of the Napali Coast. But the trail was closed. It's a seasonal thing.

On the way there, I kept having the feeling that she should be in Hanalei Bay, so we'd head back there. But then we passed a spot that she always loved. It's a fresh water stream that runs into the ocean, and there's a pool where you can take a cold plunge. Rosina always searched these places out in Brasil - the mountain streams, the waterfalls - and she loved to stop here after being in the ocean and wash off the sea.


Rosina swimming in the same spot, 2003. Who could have imagined that we would be placing her there six years later as ashes? (enjoy what you've got now!)

So we started here. Taking handfuls of her ash and releasing them in the rushing water between the rocks. When they hit the pool, they spread out under the surface, looking like a spirt slowly moving with the current. They continued on downstream where after about a half mile through the woods, the stream meets the sea. Again, as it was in Rio, there really was a feeling of letting her go, and of her being somewhere.




After that we went back into Hanalei and walked down the beach.
Whenever we arrived there, we would go straight out to the beach and get into the water. That alone is nice, but then you stand up and turn around, and there are beautiful green mountains right there, with distant strings of waterfalls streaming down. Again we all added handfuls to the sea. Then I took what was left and waded out, first throwing some handfuls in the air, and then diving under with the rest of it. The water was active, turbulent, and happily took her right away.

Many times when we get to a place like this, and for us, specifically this place, one of a simple lifestyle and in communion with nature, we would look back at our lives in Los Angeles like we were cogs in a machine, staying busy, staying frantic, hustling along with the flow. I'd think about it and wonder, "Why all the fuss?" Again, I think in death, if we have conscience thought at that moment, it must be very similar, looking at all of us here, bothered and worried, bustling around in our bodies; "Why all the fuss?"


Our sweet girl has met the Atlantic and the Pacific, and may she float in peace.
xo
ph

Feliz Aniversario!

We're in Hanalei today for Ro's birthday. Went out to the beach around 6:30 this morning and came across a rainbow. Releasing her ashes later today...


xo
ph

One Year

This is the post-it that Rosina wrote and stuck over her desk about a year and a half ago. I have it in a little frame. A message from her.





And this is a design that she had on a shirt, more words she loved. It reads: music, sensitive, kiss, tears, love, care, life, adventure, mystery, now, luck, flowers, travel, space, freedom, sigh, feeling, "saudade", union, truth, future, loyalty, play, fantasy, art, friendship, sincerity, desire, happiness.

Wishing you all of these, from her.

xo
ph

ps light a candle

untitled

There was a day in early December of 2007 when a doctor told me the time might come to make some tough choices. And he meant the single, toughest choice. And that time came. In the last several weeks of her life Rosina had at least eight or more tubes in her body – several in her chest, a catheter, one in her stomach, one in her side, stuff on her arms, her legs, her finger. She was getting dialysis for her kidneys, she was getting platelet exchanges, which also require a big machine, she was wired for all kinds of measurements, receiving all kinds of medication, fluids, morphine drip, and of course, she was hooked up to a ventilator. The “vent” was breathing for her. Without it she wasn’t quite strong enough to get all the oxygen she needed. There was a huge battery of equipment there. For those of us who had been through the whole progression, we were used to it, or numbed to it, but for someone who came to see her, came in fresh, it was shocking. She had problems with her lungs, her liver, her kidneys, she hadn’t been able to move or squeeze my hand for weeks. As her body was failing doctors chased symptoms and causes with tubes and chemicals, at this stage each small positive gain taking a toll somewhere else. (Ironically, a biopsy showed that the bone marrow transplant had gotten rid of her Leukemia). Doctors had told me that she probably couldn’t handle one more thing. On Friday, January 11, I was there with Lea and Lupe and she had a seizure. It was eerie. Moments earlier she seemed to be responding to the music we were playing, then, in response to a question, she began to shake her head no. She kept shaking her head and it was a minute before we realized that she was having a seizure. It lasted almost fifteen minutes. They wheeled her downstairs for a CT scan. She had some bleeding in her brain, an effect of an infection. That was the one more thing that she couldn’t take.

What is the purpose of all these measures, all the equipment and the drugs? To see you through. To build a bridge. To get you across the chasm, a chasm of things that will quickly take your life if untreated, to where you can walk on solid ground and heal. But the ground on the other side of the bridge had been crumbling for some time. We had reached a point where we were simply keeping her alive.

The preservation of life is deep in us and our culture. Real life sagas, and millions of stories, hinge on the simplicity of preserving someone’s life. And following that, the idea that you are a part of ending someone’s life is a heavy responsibility. I didn’t want to make that choice. But it had become quite clear that she was not going to recover. Did she really need an IV to regulate her blood pressure? To feed her? Dialysis for her kidneys? We began to peel away some of these treatments. We stopped her dialysis. The doctor told me that that alone could take her life in a short time. Days, although it could be weeks. It is difficult to say, but I have to admit that there were times, as I sat alone with her late at night, in the dark, with just the breathing sound of the ventilator, that I wished something would fail, that something would rise or drop too much and we would have to let her go, let her go by doing nothing, because I knew what was coming, the specific choice that I would have to make to stop it all. But she didn’t slip away like that.

The choice, of course, was taking her off the ventilator. This is the one that frankly makes you feel like you are killing someone. It's so deliberate. But again, what is the natural course of events? What is “God’s” way? To let her go in peace as she would without all this intervention, or to keep her alive when she is by all accounts past healing? It was the latter that started feeling more deliberate. Then late one night two nurses were doing some maintenance on Rosina’s tracheotomy, the plastic apparatus in her throat that the ventilator tube was hooked up to. They didn’t have the replacement for one little plastic part, so one of them said, “Just take her off for a minute and I’ll clean that one.” So they removed the tube for about 45 seconds. She was breathing on her own. It was quiet, it was calm. It wasn’t desperate, it wasn’t gasping, it was in fact, quite peaceful. And suddenly the whole idea of letting her go that way wasn’t so horrific (except for the part about letting her go).

I was up very early on Wednesday the 16th. I’d been sleeping at the hospital and staying there full time for several days. I went out to the lobby, a comfortable place with huge floor to ceiling windows, as the sun was coming up on the San Gabriel mountains. The doctor was making his rounds and found me there. We discussed what had happened and how things were. I told him I thought it was time. I wanted to wait a couple of days, some people were arriving and Friday the 18th was Jake’s birthday, so we decided on Saturday the 19th.

You can’t imagine what it’s like to tell people "the plan". That there even is a plan. That it’s scheduled. I said it straight, I said it with sobs, I whispered it in some people’s ear. It is a haunting memory, saying “We’re letting her go tomorrow”. I remember so distinctly greeting my friend Andrea, hugging her as I had done many times, but this time whispering "We're letting her go tomorrow." Many things gain incalculable weight just by saying them out loud. Try "I love you". Sweet Rosina. I was not a witness, I was a participant, an instigator, a decider.

People gathered at the house on the 18th for Jake's birthday. An incredible solemn camaraderie among the food and drink and music we played. At one point Zelia sang "Circle Game" with Wesley on the piano. It was beautiful and perfect, and when she finished, there was a lasting silence in the room that was sorrowful, but absolutely amazing. An unannounced prayer. It was one of the few moments in my life where time stopped, and we were all aware of eternity.

It is a powerful, but a sad, sad, thought to think of us gathered around her that morning around 10:30, but I’m so glad we were. I held her head, my face close to hers. Jake on one side and Nina on the other, holding her hands. Others standing around the bed, laying their hands on her; my parents, Sonia, Bety, Zélia, Pearce, John, Mary. Others in the hall and the lobby. Mainly quiet. The only sound being her breath. All the equipment was shut off, just us listening to her breathing. It slowed, it slowed. It stopped at 10:53. I went out to the lobby to let Will know she was gone. He was eight.


I find that I don’t fear death now. I don’t think it’s terrifying. I don’t think it is mysterious. I think it is a release. But may we be here as long as possible to love, comfort, and care for those around us, and to make them stronger for when we might leave them behind.

Will in 2002, age 3
xo
ph

P.S. 2/12/09

The day that I spoke to Rosina's doctor about taking her off life support, he found me in the lobby and this is what I was listening to on my ipod, from "The Power of Myth":
Campbell: Eternity isn't some later time. Eternity isn't a long time. Eternity has nothing to do with time. Eternity is that dimension of here and now which thinking and time cuts out. This is it. And if you don't get it here, you won't get it anywhere. And the experience of eternity right here and now is the function of life.There's a wonderful formula that the Buddhists have for the Bodhisattva, the one whose being (sattva) is illumination (bodhi), who realizes his identity with eternity and at the same time his participation in time. And the attitude is not to withdraw from the world when you realize how horrible it is, but to realize that this horror is simply the foreground of a wonder and to come back and participate in it. "All life is sorrowful" is the first Buddhist saying, and it is. It wouldn't be life if there were not temporality involved which is sorrow. Loss, loss, loss.
Moyers: That's a pessimistic note.
Campbell: Well, you have to say yes to it, you have to say it's great this way. It's the way God intended it.

New Year's Day

It is a Brazilian custom to wear white at New Years and to make an offer of flowers to Iemanjá, the Goddess of the sea. Usually you do this on New Year's Eve, but we went out to the beach on January 1st.  John Allen and I actually went in for a swim, the ocean being a brisk 53 degrees - that is cold. 

Rosina and I had a running joke/argument (oddly close together) about the possibility of life and love being like a field of daisies. Despite being an optimist, I tended more to the "no" side, but I still tried to give her daises whenever I could. I brought a bunch and these were the flowers we threw into the ocean as we made our wishes. 

We said our prayers for Rosina, and goodbye to 2008, the craziest year of my life.

Happy New Year

xo

ph

cheek to cheek

"Cheek to Cheek" was the song Rosina and I danced to at our wedding.

We met in 1985. We were good friends until 1987, when we became...better friends.  And part of that experience was watching "Top Hat" together, which is why we picked the song. I was looking for the lyrics (which, of course, start with the line, "Heaven, I'm in heaven...") when I came across this clip of the song - with Portugeuse subtitles!

Today would have been our 20th wedding anniversary.

xo

ph

There's That Tree

When we were kids, my parents would drive my two brothers and I to the other side of the Schuylkill river to see cousins or my mother’s parents. We took a crazy route that as I now try to remember, I get lost. The way was not marked by street names and numbers but by quirky and personal landmarks that had the qualities of a private joke.
Driving under the faded green riveted el train platform, going up the hill in Manyunk past brick factories…and then the real landmarks, the ones we yelled out loud in unison, like “Ritchie Allen’s house!” Ritchie Allen played for the Phillies in the 60’s.

I have no idea how we know that it was his house, or even if it was, and I can’t say it matters, we all just always tried to yell it first. On one trip, on a perfectly ordinary suburban street, we saw a slow moving car run into a tree. It was kind of exciting, but more importantly, it offered another landmark oportunity. After that, every time we drove past, took that right turn, and came around that curve, we would yell “There’s the tree that got hit by a car!” And it was still there, scarred, but healing the way trees do, a gray patch with a ring of growth around the edges. For years we always shouted it out, and I’m sure if we passed it now, we would do the same. “There’s the tree that got hit by the car!”

I always vaguely picture the year as a circle, with the New Year at the top and summer starting down at the bottom. It swings back up through the fall, curving toward January. November 19th last year was the day that Rosina’s oxygen dropped and she was rushed down to the ICU. She was there for two more months. It was a complication, that unchecked, could be fatal all by itself in a matter of hours, and I see now, though I hate to say it, it was the beginning of the end. December 7th was the day doctors began telling me about, preparing me for, what could happen. It was close to the time that I had to tell the kids. And I feel like we’re coming around the curve right now, here in late November and early December, coming around that curve where the car hit the tree. The car’s not there, and there’s little sign of an accident, but the tree remains, and shows a scar, healing.

xo
ph

Election Day

Will and I vote for Barack Obama, November 4, 2008.
Rosina would love that guy.

xo
ph

October 28, 2007

This day, last year, was the last time Rosina was out and about, roaming the earth free. She was admitted to City of Hope on Monday October 29th. At the last minute (see 10/28/07 post) we went out to the beach with the kids and with our friends Bella and John and their kids Juliette and Cooper who we've known for fifteen years. I just wanted to post a few more photos from that afternoon in a remembrance of a beautiful, spirited, and appreciated day.






Rosina loved the ocean, and this was the last time she saw it. Of course, if we'd known that, we would have never stopped crying! It put on a good show. Enjoy it while you got it!
xo
p

the future of junk and a mountain remembrance

A couple weeks ago I was in my brother’s garage in suburban Philadelphia. It is completely packed with junk. But the kind of “junk” you don’t want to throw away. Old chairs, parts of dining room tables, a partially restored snow blower, a few tires – slicks from dragsters – lots of bicycle parts, old beds, all kinds of odds and ends that were cleared out of the house, purchased at garage sales, or are awaiting fixing as they hang from the rafters and pile up on an old couch. I like junk, myself. I have a lot in my garage. I like the possibility of repair, reuse, and creative repurposing, and I suppose it also plays to my (weak) undercurrent of Yankee frugality. But what the garage is really full of is dreaming. The whole place is full of “Someday…” All these mysterious and foggy plans we have that float through our brain, plans we share or hide from our spouse. Plans that flow with the tide of your relationship, and plans that absolutely go against the current. Dreams that wait behind the practicalities of your daily life, the obligations, the intrusions, the indecision, the group efforts; waiting to be played out, to change, so that you’ll have time, “Someday…”. I suppose that the not uncommon garage full of stuff hit me in this way because when Rosina died, that hazy bank of dreams disappeared. You couldn’t even watch it blow away, it just evaporated. All the maybes and the somedays not even holding enough shape to be carried somewhere, just gone. But it didn’t clean the garage. So there you are, as you stand before all that suddenly unspirited stuff, faced not with the possibility and the dream, but with a pile of junk. And it’s okay to throw it away. It’s okay to clean your future.


In August we were lucky enough to go to our friends Gerry and Kit’s place outside Telluride Colorado. My entire immediate family, parents, siblings, cousins, made it and we had a great time. It is a place of dramatic geography and open skies and was quite welcome. It was the first time we had all been together since last winter, and in fact, I don’t think we were all together last winter at any one time, so longer than that. Gerry and Kit had put up some Tibetan prayer flags on the edge of the mesa, the escarpment, and the flags flew there for Rosina. The idea is that there are thousands of prayers written on the flags and the wind blows through and carries them off like milkweed, endlessly.

It seemed like a good place and time to do something. Toward the end of our stay I had everyone find a small rock and write their name on it and we went out by the flags to pay tribute to the girl.

As the sun was setting on the mountain range across from us, we placed our rocks in the pile that held up the flags. We then had a long moment of silence. I eventually broke the silence with the Brazilian birthday cheer, and then others chimed in with their warm memories and caring regrets. We didn’t just lose Peter’s wife, we lost a mother, an aunt, a sister, a daughter. Disbelief still rings through even as you discuss the reality.

I have to share something I am so grateful for, the image of her face that I carry is nothing but bright and shining, a full smile.

Finally my nephew Dan sang a song he had written with a friend on a beach in Mexico, full of sweet farewells and sights and sounds perfectly suited for Rosina. It was a good moment and we’re all glad we did it. If somehow you end up there, please add a rock.



xo
ph

Back to Rio

Ro makes a point to Zélia on Copacabana beach, January 2007.

Rio de Janeiro is a special place. Sometimes it feels more like an organism than a city. Vibrant, tough, loving, spectacular, messy, urban, natural, and quite alive. I love going there. But this visit carried a particular purpose - to deliver Rosina's ashes to the sea. Half her ashes, actually, as she also always wanted to be in the Pacific ocean as well, off the north shore of Kaua'i. Kaua'i is like Rio in a way, but without the city - Rio 200 years ago. The kids and I traveled with Sonia as well as our and Rosina's dear friend, Marla. She came on a kind of meaningful whim and is glad she did.

On Easter Sunday, March 23, we gathered at the Yacht Club or as it's spelled in portuguese, "Iate" and twelve of us boarded the boat. It was a pretty decent size with a roof deck above and a couple of rooms below. We headed out of Guanabara bay, passed not far from Zélia's house, rounded Pão de Açucar (Sugarloaf) and headed out into the ocean: the orange line below.

Rosina lived from age 5 to 24 near Copacabana beach. It was part of her neighborhood. She went to the beach the way you might go play tennis or go to the store or sit on your porch. It was a daily part of her life. It's hard to describe the view of the city from out there in the ocean, the mix of huge rock faces on mountains of jungle greens footed with high rise buildings, but I can tell you it's beautiful and dramatic and a fitting place.

For days before we left I kept wondering how to carry the ashes, how to let them go? They are delivered in a plastic bag which is inside a plastic box, which is inside a velor bag. Kind of a Crown Royal bag. They offer all kinds of urns and such for sale at the funeral home, but they all seemed too Gothic to me, plus I'm suspicious of the business of profiting from people in misery.
Although I have to say that the miserable day when Nina and Pearce and I were at the funeral home, the very day she died, we laughed as we considered buying the "memory book" that had an American flag printed on the cover and the caption "Thanks From a Grateful Nation".

I decided to just take the ashes as they were, and after separating half of them out with big kitchen spoon (to take to Hawaii later), I packed the box in my carry on bag. Ashes, by the way, are not really "ashy", it's more like dusty sand. I think, in fact, it's mostly bone. Is this too much info? When you see someone who has died you can easily tell that that they're not there anymore, maybe their spirit floats around the room, floats around inside you, but at the same time - holy crap! It's them! So it is with the ashes.

Once we had reached a good spot, the engines were shut off and I took the box out of Rosina's orange back pack. Lea had brought white roses and we all threw them on out onto the water. It was quite clear to me, after previously thinking that this was a bit odd, that the best way to set her off into the ocean was simply by taking handfuls and releasing them. And that is what we did.

First me, then the kids, and then everyone else. The boat had a small landing in the stern that was right at the water's edge. I let them go on top, Jake sunk his hand in the water, some threw theirs to the wind. We all did it, more than once. It instantly felt right, it felt secure, and it was simple. But there were tears and there were the reminders of the shock of it all that causes Zélia and I to repeatedly say to each other "So, it's true."

I jumped into the water soon after, a ceremonial dive, not unlike the one we took at our Brazilian wedding, and then before the current carried me away, I swam back to the boat. We went and anchored off another beach and several of us went swimming before heading back to the house for a lunch with a few other dear friends and cousins.

May you never need to to do this, but if so, may it be as beautiful. Sweet girl, keep swimming.

xo
ph


Off the coast of Fernando de Naronha, March '06
The lyrics to the chorus:
Who taught me how to swim?
Who taught me how to swim?
It was, it was, sailor,
It was the fishies in the sea
It was, it was, sailor,
It was the fishies in the sea

Happy Birthday

Above is a cartoon by our friend Rogerio that he did for Rosina's birthday today. She would have been 47. We went out with the kids to Sushi Ike as we've done for many many birthdays and Rogerio delivered a great hand drawn card as usual. Besides being spot on for Rosina (color is good!), it's also a reminder to carry on; although your circumstances may change, carry on. Of course, she looks great in white, too.

Some days are long, some are short, and we all have our moments. It is an odd sensation to be utterly convinced that something happened, yet still not believe it. It's not denial, it's shock. Sometimes the missing is a happy fleeting remembrance, and sometimes it's like staring into a dark hole of eternity (speaking from experience, try to avoid that when you're driving).

One week after she was gone, we had a memorial here at the house. For practical reasons I kept trying to come up with another place, but, as it's said, there's no place like home. I wanted it to be true to Rosina, and true to me, true to us. And it was. There were one hundred and fifty or maybe two hundred people here. Among the many people who told me how much they appreciated the day, I spoke to someone yesterday who said it was a little odd. Why? "Because it was such a good time." I just couldn't imagine a dour and grim service as paying tribute to Rosina. Friends and family spoke, read poems, sang songs and cried bunches while at the same time, all the attending children ran around outside and laughed. It was right. There was a fabulous group effort to get everything together, from the incredible food to the AV squad to the setting up and cleaning up. (I thank you!)

All week cold rain had been falling and more was predicted for that Saturday. Earlier, Will had asked me if Mom was going to try and contact us somehow. I told him that she would do it all the time, but in little ways; little things that we saw or that happened to make us think of her, that's how she'd do it. And as if to prove it, that Saturday the sun came out for a beautiful day of blue sky. A gorgeous day, and as people started to leave late in the afternoon, the clouds crept back in and it rained again. She opened a small window for us. It would have stayed open longer, but hey, she's new to this.

We are all back to our "normal" routine with occasional missed days and occasional blank expressions. It's still really early. But today with bright eyes we salute our dear Rosina's birthday and sing the song that is not a regular Brazilian birthday song, but one that we always sang together:

Saldamos o grande dia
que tu hoje comemoras
seja casa onde mora
a morada da alegria
o refugio da ventura
feliz anniversario!

(translation)
We salute the great day
That you commemorate
This house where you live
the dwelling of happiness
the refuge of joy
happy birthday!

xo
ph

What a Wonderful Person

Rosina reached the end of her road trip today. She lost her tough and valiant struggle this morning. Recently the complications of her condition compounded into something that she couldn't fight, and she calmly slipped away.

She was peaceful, she was surrounded by people who loved her and people whom she greatly loved. This is all she ever wanted in life. To be surrounded by love. Love and honesty. She was not a person who aspired to things that could be measured. Her idea of an achievement was a gathering of people who showed no pretension, who were caring and warm and fun. Love and honesty. These were things sometimes lacking in her life, and she unconsciously made them more than her goal, it was her only real place of comfort. She had a career as a singer for some time, but after we fell in love and started our family, she didn’t burn to sing. She never really pursued it after that. Singing was always for her a place of beauty, but it was also a place of longing and escape. Her mother, who was also a singer, had a child and gave up her career. Rosina had a child and gave up her sorrow. She built a beautiful family and many deep friendships; she made sisters and brothers; she became a mother.

Our task is not to be sorry, we can certainly be sad, but we should not be sorry. Sorry seems to be full of regrets and disappointment. We need to take everything that we loved about her and make it our own, and here it is very simple. Love and honesty. If I need to speak with Rosina I don’t look to the sky or look to the ground. I look at the faces of those she knew well, I look at our three beautiful children; I look in the mirror. For I was greatly loved by her, and my love for her is the same. Sweet girl, you leave us now, but you stay forever.



xo
ph
and family

Visiting

Friends, we need to hold off on visitors for the moment. Please send your emails and notes and calls and all that stuff, though.

Thanks,
xo
ph

She's a Fighter

That's what the doctor said to me today after visiting with Rosina. Things are very difficult and she keeps hanging in there. He expected her to be sleeping but she responded to his questions with a nod or a shake of her head. Unfortunately, a good look in the eye does not indicate what's going on inside. In the past week she has acquired some infections which are, of course, not good for her. Her general outward condition stays about the same. Still in the ICU etc. sometimes awake, sometimes not.

Last night I came out with Jake and Nina and Sonia and I think some others felt the need. I counted today; there were 23 of us out here at the same time. Very Rosina: an improbable and impractical event that everyone was glad they participated in. She has a knack for that. The whole group was friends, all people who know each other almost exclusively because of us, and when I say "us", I mean Rosina. I'm more like the roadie.

Thanks everyone for your calls and emails and notes and visits. I'm trying to find a way to save all my voicemails!

xo
ph

10 Weeks - updated

Not too much to report as most of the changes with Rosina are very small and swing from day to day, or even during a day, and I don't feel like posting all that. She is continuing with all the treatments that she's been getting. She'll probably stay on the ventilator for a while as she needs to build back her strength. One of the unfortunate aspects of this is that she can't talk, and I'm quite sure she wants to. I know I'd like to hear her. So we stay positive and look for her smiling.

UPDATED - Rosina had two procedures today, a bronchoscopy and fluid removal from her stomach. The bronch showed no signs of bleeding which they expected, but there might be some aspergillus which she's already receiving antibiotics for (do you really want to know all this?) and they'll do tests.

They pulled a bunch of fluid from her stomach which was good and probably relieved some pressure on her lungs. It could have also been hindering her ability to absorb the food she's been getting.

The other good news is that her White Blood Cell count, which had dropped and then risen just a bit up to a 1.2 range, was up to 3 this morning and 5 this afternoon. That rapid rise is kind of how it went up the first time after the transplant. That's good, as of course she wants her white count up.

Many people have been here in the last few weeks visiting and helping and it has been inspiring for all. Thank you all so much for your tremendous help.

xo
ph

Designated Donors

Rosina has received lots of blood and platelets over the course of her hospital stay. When you get a unit of blood that someone donated specifically for you, it has a yellow tag on it. The other day the nurse pulled the tag off for me and I put it in the pile. There are 23 designated donor tags. I'm impressed. If you are one of those donors - thank you!

Rosina is still in the ICU and has been for over six weeks. After a couple of very hairy weeks her condition has improved a bit. She continues to be more alert, has wiggled her toes and moved her knees, and for some reason, has insisted on keeping my reading glasses perched on the end of her nose. Nina was here showing her some photos and I put the glasses on Rosina. Whenever we take them off or ask if she wants them off, she shakes her head "no". She's had them on for three days and sleeps with them.

She is still getting dialysis and plasma exchanges. They say her kidneys will heal, but they need some time. The dialysis machine filters your blood and draws out excess fluids. It takes a machine about the size of a small fridge with wires and tubes and filters and gauges to do what two small fleshy things in your body do naturally. The body is an amazing thing, which is why it takes some much work to take care of it if something's not quite right.

Her white blood cell count got particularly low and there could be several causes for that, but the bone marrow biopsy didn't show anything worrisome, which means that it probably was more an effect of all the other treatments she was getting. It's been quite a chase taking care of the lungs, liver, kidneys, bone marrow, and general weakness. The white count seems to be rising. It was as low as .2 (4-10 being normal) and today it was 1.2.

While most of this is encouraging for us, for Rosina, as she wakes more, there are anxious times of trying to take it all in. She can only hear so much explanation, and generally just prefers having friendly faces there with her. Several of us have been taking turns spending the night. She's been receiving lots of loving care. And from the people Rosina knows, it is genuine, just the real deal. Months ago she put a post-it up above her desk at home where she had written "Love Heals". I think I'm going to frame it.

Still in the woods but looking for the meadow,

xo
ph

Slow Cruise

Not too much going on at the hospital. Well, that's not quite true. There's a lot going on all the time to maintain and improve Rosina's condition, but her condition has not changed that much. She is getting dialysis almost daily. Her kidneys aren't working quite right, but they are in a condition can heal over time, so the dialysis is to hold her over. Her white blood cell count has been pretty low and they're not quite sure why. They did a bone marrow asphersis to check that out, results next week. Lots of people have been in to see her which can be great and uplifting, as well as very tiring. So those of us that have been by have gotten both responses. Her level of awareness/awakeness has been about the same all week, recognizing faces, mouthing some words, cracking a small smile. So she continues on this slow cruise.


If you've known Rosina for a while, you might know what she's doing with that thing on her head. She's turning a "puddim", which is pronounced "pu-jeen" in portugeuse; flipping it out of the mold and onto a plate. It's a Brazilian flan or sort of a créme caramel, and Rosina has made a lot of them. If she was home, she would have made one this week. We've had lots of people here at the house, quite a fest in her honor. Hope you've enjoyed your week as well.

xp
ph

Christmas Eve

Not much change here. Rosina is listening and responding to questions, nodding and shaking her head. We've talked a lot and I've told her many times how many people are thinking about her. Jake and Nina have both been back to see her. I read some notes to her that she's received and sang Silent Night to her in Portuguese (Noite Feliz). She got another plasma exchange which takes a couple of hours, and also dialysis, which takes even longer I believe. She is a little worried, but she is calm.

We have family here now for Christmas, and more arriving this week - it will be loud. Whether you celebrate Christmas or not, you're probably out of your normal routine this week, seeing people you've known a long time. Enjoy it!

xo
ph

Friday

Rosina had some symptoms that led them to do another bronchoscopy today, but her lungs were clear. There was actually a little something in there that they sent off (not blood), but she's already getting antibiotics and it doesn't seem to be an infection. They're lowering the steroids again. So it was good, although now they have to figure where those symptoms come from(!). She was also more alert, as much as she's been in a long time, and when I said "I love you, can you hear me?" she nodded yes. Which is a lot right now. So there are lots of things in question, ups and downs continue. Here's to more ups.

xo
ph

Saudade

"Saudade"(pronounced sow-da-gee) is a wonderful portuguese word that doesn't really have a literal english translation. It kind of means "missing", as in "I miss you", but it has more flavors. It's a longing in your heart, and it carries a kind of bittersweet acknowledgment of fleeting things; that the enjoyment of being together is an end in itself if not simply the best thing of all - very Brazilian to me. And very Rosina. Saudade, mb, muito saudade.

She is kind of the same. Her body is under a lot of stress and there are a variety of treatments going on. Honestly, it's tough. I took Nina out to the hospital last night, it was a really good visit. Although Rosina cannot respond, Nina talked to her for a couple of hours and held her hand. Nina said it wasn't as weird as she thought it was going to be. It was nice. I took Jake and Will today. Their reactions were mixed. Jake was a bit choked up, Will was a little weirded out. I sat with him outside later. I asked him how he thought mom looked. He said, "She'd win first prize in a Halloween contest" which was both heartbreaking and funny. But it was definitely good for them to go.

We did a project where we put Rosina's handprint on some fabric. Later social services people at the hospital will use it to make a pillow that the kids can have. They pick the fabric and Will, for one, put his hand print next to Rosina's. I actually took her hand and brushed paint on it to make the print. It reminded me of how she always talks about stuff we used to make together when we met, like flyers for the band (we were in a band together) or later, Christmas cards. A little art project. She'd like it.

She was more alert today, moving her head a bit. A lot of people came by. She's had another plasma exchange and had dialysis a couple of times. Her kidneys aren't working that well. They did a CT scan of her head and neck and it was all normal. Yesterday they found the bleeding in her lungs had started again and they went ahead and increased the steroids. Today, her lungs were better and they were able to bring the oxygen levels on the ventilator back to normal (30%). It's a lot of stuff for a sweet thing.



xo
ph

Evolving

Yes, it's her. You can assume that if a couple days goes by without any news here, it's because there's not a lot of news. The waking up has been so slow, and the difference between days is how many times Rosina nods her head, or how she looks around, or if she was able to close her mouth. She's starting to do all three. She looks better.

This morning they switched the ventilator to over to CPAC mode, which means that she's still connected, but she's doing the breathing herself, not the machine. If her respiratory rate gets too slow, the machine kicks in. That's a small but good step. They have also lowered her steroids and so far have not seen any new bleeding in the lungs, which is what the steroids were for. There was a little concern today as they saw some fresh blood around the trach, and they had to do a bronchoscopy, but the lungs were okay. That was a relief. The "bronch" as they call it, is a lot easier with the tracheotomy. Considering how slow this is going, it's a good thing they did that. She has also had abnormal numbers related to her liver and today they also did a plasma exchange. As a by product of the bone marrow transplant (remember the bone marrow transplant?) your plasma takes a hit and needs to be freshened up. So they wheel in a machine which takes blood out of you, spins out the plasma in a centrifuge and then adds new plasma as the blood goes back into her body. There's also been some concern about her kidneys, but that changes day to day. It's hard to keep track of all this stuff and how it is caused and/or connected. I'm not sure, but I think the plasma condition also shows up as low platelete numbers, and she's been getting platelets. She's been getting everything.

I was over there today and talking to her and her eyes opened a bit, but when I sang a bunch of songs to her, songs I made up to sing to the kids, her eyes were open wide. She heard it. It was nice. Those songs usually put her to sleep (as they should).

Thanks all, for the kind words!

xo
ph

Three Wedding Pictures

Today, December 16th, is our nineteenth wedding anniversary. I remembered this one. We actually got married twice. The first time was in Pennsylvania, and since Rosina's family was all in Brasil, my mother, a woman with three boys, got to plan a wedding. For Rosina and me it was really easy. We showed up one week before the wedding and there it was. It was at night, black tie, and the church was decorated with greens for Christmas.

Months before we had decided to get married, Rosina was in the attic with my father and he was opening these old boxes of dresses that belonged to my Grandmother. They were all from the twenties, flapper dresses and evening gowns. Rosina said, "If there's a wedding dress in that box, I'll marry your son." And there was. It's the dress Rosina actually wore for the wedding. My grandmother wore it in 1927. Rosina put finger waves in her hair and wore these cute silver shoes. She looked great. My father lost it when he saw her all dressed up like that. He walked her down the aisle.

Our second wedding was in January in Brasil. It was at her brother's ranch about an hour and half from Rio de Janeiro. Her bouquet was made from flowers gathered around the property. We wore white, we were barefoot and we got married by the bank of the river that runs through the property. It was pretty groovy. The justice of the peace that married us was completely wall-eyed so he managed to look us both in the eye at the same time. The ceremony was in portuguese so Rosina squeezed my hand when I was supposed to say "sim" (yes). After the ceremony, we climbed up on this big rock and jumped into the river. It all seems very fairy tale right now. It's like a movie where all this nice stuff happens and it's charmed and romantic and then later in the story the wife gets sick and while you're drawn in and feeling it, you're kind of pissed off that the nice story took this highly dramatic and uncalled for turn. It certainly sharpens your appreciation for the easy times. Most of which you didn't even know were that easy. I love you Z, here's to many more years. Nineteen's not a very big number.


Rosina is holding steady, opening her eyes, and proceeding very sloooowly. So far, so good. We have a mile of baby steps. Thanks so much, everyone for your concern and kind words, and help.

xo
ph