rolla'coasta

Check out is the Wedding section of the Society pages of the frickin' NEW YORK TIMES on March 18, because.... drum roll please.... Jason Reade and Eddie Jauregui's union (at Oxy on the 17th) will be announced! How cool is that?

Something else to check out: I just almost peed myself laughing at Erik and his brother's youtube video. Check it out: http://www.youtube.com/watch?v=ID2nBkP8_Mg
I was wondering if other people have secret or not-so-secret youtube publications. If you do, will you let me know? It's so creative and grassroots and fun!


So, I'm back from NYC once again after a few days holding Uma's hand and trying to make her smile. One of the most beautiful things to witness is Uma reaching her hand out to you. She often reaches out to touch John's face and I was able to snap a cell phone picture of it for you all to see.


She seemed to be doing better each day I was there. Her eyes seem more bright and clear. She was trying to push her body up and turning herself from side to side- we joke that she's trying to jump out of her bed. The funny thing is she probably is. Like Uma always has, she is scratching her face and skin a lot, which isn't necessarily good, but it sure is Uma. Yesterday, they did a CT scan to see if her ventricles have continued to swell. If not, then the shunt procedure may not be necessary and she could be on her way to a rehab facility by Tuesday! Even if they decide to go ahead with the shunt, leaving the hospital is likely to be later this coming week. John joked with the doc about leaving on Monday and instead of scoffing, the stoic dr. H shrugged and said, "I don't see why not". So, good news from the 11th floor of st. vincent's.

If only to be there under better circumstances because New York City is so rockin'. Being a young professional sans babies would be such fun in that city. I stayed with my sort-of cousin, Corey, this trip and her life seems so glamorous- darling apartment, super stylish clothes, fabulous office, cabbing here and there. I guess my life in Tokyo was pretty cool in a nyc sort of way; not that i had stylish clothes or even close to a fab office, but i did have freedom of movement, friends with good work schedules and flexible incomes, and loads to do and be stimulated by every day. So, if I never get to live the new york life, i am really glad that i got to live the tokyo one.


The waiting room for the neurological ICU is not such a rockin' place. It's full of people living in limbo, who don't know when or if their loved ones are going to recover. The past two weeks have brought in two twenty-somethings that were hit by cars. One, Jeremy, a 26-year-old investment banker from New Jersey, woke up soon after admittance and was able to be moved to a rehab center in another part of the hospital a little over a week later. Last Sunday, a 24-year-old dietician named Sabina, from Northern California, was on her first date with some guy when a pick-up truck hit her. She is still in a coma and her scores of friends that visit her each day have that glazed look of people who just don't know what to hope for. We've met too many families, too many groups of amazing friends and colleagues over the past month. Their caution is so familiar- not daring to assume the best but just not ready to face the worst.
Isn't life just so random? Doesn't it just make it impossible to believe in an order of things, in divinity? All I can really take from this is: LOOK BOTH WAYS AND THEN LOOK BOTH WAYS AGAIN BEFORE CROSSING THE STREET. What else can you say?

know a good wine for this cheese?

appreciation

get ready for it. here it comes. the velveeta-est blog post in the history of this online journal. i just have been overwhelmed with a sense of gratitude lately- for various people in my life, for relative health, for opportunities and beauty.

Last Sunday, we bolted out of bed at dawn to hightail it back up to Boston to attend the Wellness Community's Caregiver of the Year brunch. it was an appreciation ceremony for several outstanding cancer care givers, of which Miss Jackson was one. they read part of my nomination* submission and gave her an elegant glass award. the food was mediocre and the ceremony a bit contrived, but the sentiment and the no-words-can-describe-it gratitude was real for every patient and survivor in that room.

i'm also obliged to so many other people who have either made this past year endurable and/or continue to grace my life- my mama, jamie, bess, jonathan, leslie, anna, uma, andres, jimmy & shirley, gioia, katie, evelyn, kent, linda, peter, erin, marie... i could go on and on and on. how blessed am I?? also for the awesome nyc folks who unfold their hospitality to me each weekend as i seek shelter for the 11pm-11am shift when st. vincent's visiting hours are closed: jason, mike, adam, corey- thank you. school continues to go well, another aspect of life that i am so thankful for. and whoever you are reading this right now- thank you too! it's awesome to get comments and emails from you.

i was discussing with my massage therapist today (yes, thanks also to MassHealth for my free complementary-medicine massages!) about how much you value things once you've been denied them. I have always been nerdy, but I really love my studies now that I've had to endure a yearlong hiatus.

today was a glorious day here in boston, where the weather taunts you with a spring day only to laugh at you with a snowstormy forecast. i drove with the sunroof open and walked with the heat baking my "fluffy" (characterisation courtesy of chris doten) head of wiry hair. this is so velveeta, but i gotta say it: it was one of those days that puts a spring in your step and makes you just grateful to be breathing.

but of all of those things, i am most grateful for the smiles and chuckles uma has shown me over the past month. to think that it could have gone differently, to think that a lifetime without one more sarcastic eye roll was possible thirty days ago... it's almost too much to even consider. every day brings a little tiny iota of progress, for which i know we all feel enormous gratitude and hope. so, i appreciate the med team at the hospital and all of the people who have visited/prayed for/sent messages to Uma. she's gonna teach us the meaning of strength and, i have a feeling, the meaning of appreciation soon enough.

* This application could not have reached me at a more apt time. I nominate my sister, Jaci, as an extraordinary caregiver. When I was suddenly diagnosed with Acute Lymphocytic Leukemia in February of this year, I had been attending The Fletcher School at Tufts and been an active, very healthy 26-year-old. Strange body aches led me to the campus clinic and their blood test sent me, bewildered and feeling fine, to the ER at Brigham. That night, when we found out my WBC was 750,000, was my sister’s 24th birthday. She and my Mom arrived the next morning and Jaci has not left since. I am not sure where to begin to describe the kind of loyalty and care Jaci has heaped upon me. Although I had friends and other family visit and pitch in tremendously, Jaci has been my caregiver from day One. She had been in the middle of earning her masters in California (where we are both from), working as a counselor, and teaching kids- certainly involved and invested in her life on the west coast. But she never questioned or backed off from her commitment to me. She slept in my hospital room or organized my friends in shifts during my one month internment. Since then, I’ve had radiation, chemo, and all the crazy personality-changing experiences and drugs that cancer brings. Through it all, Jaci has made me laugh every day, she’s held my hand at every biopsy/shot/spinaltap/etc, she’s encouraged me to use art/massage/acupuncture to alleviate the pain, and she’s been my brain and spokeswoman when I can’t remember pills/advice/or that there is a tomorrow. Not to mention she introduced me to Tivo, which is quite the saving grace of TV! I want to expand a bit more on Jaci’s sense of humor, which, along with her cooking, has probably gotten me this far-NO JOKE. She is so witty, so down to earth, so wise, in particular contrast to my asinine nerdiness or the melancholy months of treatment. We are still working through this, but, as I said, the timing of this award is so perfect. I am finally in between my Intensification Phase and Maintenance. Although Maintenance is still another 15 months of chemotherapy, we expect that I will have more independence and am considering moving back to California when I feel strong enough. It’s almost been a year. One year. Would I give up my life for an indefinite amount of time for someone else? Would you? Jaclyn did and does and now that I’m on the cusp of a new phase, I am eager to let her go and know that I have a model of strength, selflessness and courage that few could emulate, and a debt that I could never repay.

the power of love

please click: www.theumafund.blogspot.com

Live Blogging the 10th Floor Waiting Room

This is a blog composed by Erik, Marie, me, and Adam in that order. Erik's first:

It’s Friday night, after dinner.

I'm sitting here in the 10th Floor Waiting Room with Marie and Erica and both of them are all "write a blog NOW!" and I'm like, "jeez, okay," but I’m really tired and unfocused because I only slept three hours last night, so I don’t think I’m really in the state of mind to write anything coherent—or, at least, to worry about writing anything coherent—so I’m just gonna let this flow. (As if I ever worried about being coherent on my blog.)

I haven’t written a freaking list in a long time, so I’m gonna make this a list.

Of nothing in particular. Just some hospital stuff. Consider this Live Blogging of the 10th Floor Waiting Room, if you will.

1. There's this random girl, I think her name is Rai, or Bai, or Raye, or something (Marie is reading over my shoulder as I type this and she totally knows the girl's name and she offered to help me, but I’m not listening to her because I'm annoyed with her) (I'm annoyed with her because I wanted her to be my guest blogger tonight, but she was all “it’s YOUR blog, YOU should right it” and she didn’t even care that I only slept three hours last night and I’m scatterbrained right now.) (Wow, and I actually just wrote “right it” in that last sentence instead of “write it.”) (I am so tired.) (Anyway, I’m ingoring you right now, Marie.) (How do you like THEM APPLES?) (This blog entry has gotten really sidetracked, hasn’t it?) (And boring.) (Like, it's really only interesting to me and Marie right now.) (And maybe Joe Chandler.) (Sorry people.) (I'll move on.) (To something more interesting.) (Wait, but I had a point about the girl whose name I forget.) So this girl Ree, she's like 3 or 5 or something and she "wrote" a blog entrey (wow, I really can't fucking spell tonight) (I only slept for three hours last night) (I already said that) (but, like I also already said, I’m scattered) for Erica’s blog just now and it was cute. Wow, I already said it once, but I’ll say it again, this is a boring #1. This list better get more interesting and it better get more interesting soon, ors else I’m gonna stop reading it too.) (I don’t know why people don’t use the word “ors” more often.) (And “aks” too. “Aks” is a great word.) (There’s a running gag in Futurama—or maybe it was only in one episode but it felt like it was in several—where Leela always says “aks” instead of “ask” because the word has officially evolved in the future.) (Anyway, I promise to have some Uma updates at some point in this blog entry—several updates—so if you just want to skim until you find the word “Uma,” feel free.)

2. I think it’s high time this list had a number 2. That was not supposed to be a scatological reference, but now I cannot help but read it as one.

3. John just walked in: "She's awake, she's doing good. We just listened to a bunch of songs on the ipod, there were several moments when she moved her head and the earpiece popped out and she grabbed it herself and put it back in. And then when she got tired of listening to the music, she took the earpiece out herself." And then he just walked out, I presume to go to the bathroom. Sorry but that’s the first thing I thought of because of the whole “number two” reference in the above comment, and besides, it's been a long time since I've written about poop on my blog. Not that John is necessarily pooping right now, I don't even know for certain if he's in the bathroom, but that's the direction he walked to. Oh, wait, he just came back out, that wasn't enough time to poop, he must have peed.

4. That Rie girl keeps coming over here and looking at my computer and blowing her nose. She is such a busybody.

5. When Marie and I were in with Uma, um, about thirty minutes ago, or maybe an hour ago (I'm not sure, time is really weird in waiting rooms), I told Uma that I was still working on planning her bachelorette party and I promised her that I wouldn't get her a stripper and she smiled a big smile. We've had this conversation many, many times. She really DOES NOT want a stripper at her bachelorette party. And I always promise her that I won’t get her one. And she never believes me. But this time—this time I think she believed me. Maybe. A little bit.

6. Rae is crying right now. I don't know why. That’s the thing about hospitals. There are random people crying all over the place, and then random happy people all over the place, and then random people with glazed expressions all over the place, and then maybe you’ll see someone who’s really pissed off—at the doctor, or at the asshole who ran over their kid, or at the world, or at whatever.

7. This post is SO BORING. I’m sorry.

8. Adam Day just came into the waiting room. He was just in with Uma. He said that her dad's in with her right now, so we're going to let them have some time alone together. Nithi hasn't been in the room in a while.

9. Adam Day is cute.

10. He doesn't read my blog anymore because it's blocked at his work, so he might not ever know I said that, which is totally okay because he's straight, and I like him but I don’t like like him. But even if you don’t like like a person, you can still appreciate how fucking cute they are. Right? And that they have a hot body. Adam looks really good in a suit. I can’t believe I’m writing this right now. So many people who read this blog know Adam Day. (Lindsay, YOU agree with me, though, right? About his total cuteness and hot bodiness?) And the fact that he brings us all hot chocolate every night makes him a completely stand-up individual and I don’t understand why he isn’t married. Someone should snap this guy up and marry him right now. (Marie just said "Oh my god, get over it.") (Sooo I will.)

11. MARIE: "While you're quoting me, why don't you quote that girl's real name. It's Bria. B-R-I-A, Bria. You were SO off."

12. I'm sorry this blog post is so self-referential, but I’m starting to feel like it’s the Studio 60 of blog posts. So inside it's bad. But hopefully fascinating in a you-can’t-look-away-from-a-trainwreck sorta way.

13. I haven't had a good bowel movement in so long.

14. MARIE: "Lists are supposed to have a theme, I'm just pointing that out." ERIK: “If you want to write this blog post, you can write this blog post. I already gave you the option.” (Marie’s rolling her eyes at me right now.)

15. MARIE: "And that girl is, like, 8-years-old, NOT 3 or 5."

16. Back to my bowel movements: About five minutes ago, I felt like I had to poop really bad, but I willed the feeling away and now I am so going to be constipated.

17. But I don't like to poop at the hospital.

18. Which is a problem because we've been spending so much time at the hospital.

19. This blog post suddenly found a theme. Poop. Uma will approve, when she eventually reads it.

20. MARIE is still reading over my shoulder and she was just like, "Go to the bathroom and poop!" I told her that I can't any more, I've willed it away. "Will it BACK!" she tells me. But I can't. It's so gone.

21. I just went on a mini-diatribe to Marie about why I don't like to poop at the hospital and she finally agreed that I have some valid points (or maybe she just got tired of me ranting about poop) and so the issue's been settled. For now.

22. Moving on. Again.

23. I stepped away from this for awhile and Erica, Marie, Adam and I all started debating what the "gayest alcoholic beverage" is. See, the other night, after visiting hours, I kinda went out on a date with my friend Bo's friend Jeff, and we went to this random bar in Chelsea, and I asked the bartender for the gayest drink she had, and she offered me a Melontini, and I felt like she could do better than that, so then I looked at the menu and decided that a Watermelon Jolly Rancher Martini was supremely more gay than a Melontini, so that's what I ordered. I told this anecdote to the rest of the waiting room and that’s when our "gayest alcoholic beverage ever" debate ensued.

24. Marie thinks that the Pina Colada is the gayest drink ever. But only if served in a coconut.

25. Erica thinks that "any drink from TGI Friday's with whipped cream on it" is the gayest drink ever.

26. Adam thinks that the Cosmo is the gayest drink is. (Which might be true, seeing as it was the drink of choice for Carrie, Miranda, Charlotte, and Samantha.) (As a side note, the Cosmo is Uma’s favorite alcoholic beverage.) (Specifically BECAUSE it’s the drink of choice of the Sex and the City girls.)

27. I just went up to Uma's room to check in on her, but John was sitting in there with her, and it looked like they were having a tender moment, he was leaning in close and talking to her, so I decided to let them have their moment and now I'm back here live blogging the waiting room.

28. Okay, wait--John just came out of the room and I'm going to go in there now. I'm leaving this computer open in case Marie wants to continue this Waiting Room Live Blog. (Hint, hint.) (Maybe she can get this blog post on point and away from all of my random ramblings, maybe she’ll give us some Uma updates.)

Marie for a minute:

29. I can't remember how much Erik mentioned in emails/blog posts about the newest thing to visualize, but right now what we want is for her ventriculostomy to come out safely without the need for an internal shunt. Today they tested her intercranial pressure with the drainage tube off for awhile, but it wasn't quite ready, so they had to turn it back on.

30. John is completely exhausted. We just convinced him to go home and sleep, and we promised to do the eleven o'clock thing (we stay till the last second of visiting hours, until the nurses kick us out, so Uma gets as much of everyone as possible.) (Although I suppose maybe she's tired of us by then.) (But until that trach tube comes out and she can tell us to get out, we're staying.) (I totally just adopted Erik's paranthetical-clause-writing-style. Sorry.)

31. Back to the drainage tube: They are going to test again on Sunday, and we all need to WILL the lining in her brain to be ready to reabsorb fluid on its own and not need the shunt.

32. Erica fell asleep on a bench. Erik took a picture. Maybe he'll post it.

33. Erik won't post this list until it has "like, a hundred entries." I'm not sure if we're gonna make it.

Now Erica for a minute:

34. If anyone reads this whole thing, I will give them a cookie. If you'd like to audition for said cookie, let me know and I will quiz you on if you REALLY read all 100 things.

35. Today, I saw Uma do many wonderful things but my favorite was when Marie crouched down on Uma's left side and Uma started to play with Marie's hair. She repeatedly combed it with her fingers with perfect dexterity and purpose. Then, after twenty or so strokes, she gently cupped Marie's face in that hand. Marie said, "I love you too" because Uma's message was crystal clear.

36. We ate "the best hamburgers in Manhattan" tonight. We, in order around the table= Wayne (John's bro), Mike, Marie, Jaci, Andres, Jason, Nithi, me, Erik, John. They were indeed very good burgers, but the cool part was that the restaurant, Chumley's, is in an old speakeasy, so there are no signs indicating that this old wooden door leads to a cavernous loud bar.

37. We are now discussing where to meet Zina. She is one of Adam's best friends. She also goes to Fletcher. We are probably going to go to the only straight bar in Greenwich Village.

38. Marie is currently studying a map of Manhattan. She is trying to memorize it, I think. I've got five bucks that says she knows this burough better than a local by next Wednesday.

39. Anna is coming to visit on Tuesday. Yay!

40. What is heartburn? Is it like a chestpain? Sort of like a backache? I think Manhattan's best burgers are giving me some of the above.

41. Adam is reading John Updike. Have you read any John Updike? His 2006 book, Terrorist, looks interesterting.

42. John and Erik are upstairs with Uma. Hubby and future hubby. How many women can boast that they're best friends with both?

43. "ooh the east river. that's where they throw people on Law and Order. the east river". that's marie and her map.

44. i'm going to go up to see ums now and then head back down to brooklyn to go to bed. bonne nuit.

Now Adam for a minute:

45. This is a very tired Adam taking over with the list, I have no idea what's been written, so this caveat is number 1 for me.

46. I saw “Uma” graffiti today on the NY Subway, number 4 line.

47. Nithi showed me photos of Uma's brother and sister. The sister is going to be trouble, just like Uma. You could tell she was stubborn from the first photo.

48. Uma has been sharing a room with this woman Linda, whose family waits outside all day every day like Erik, John and Nithi. The daughter's name is Sladie, and she introduces herself as "Lady with an S."

49. Erik is going to get skin poisoning from all the ink he has on his hands from making Uma tattoos. He's totally colorblind, so he can't even really tell how green his hands are.

50. I think Uma's getting annoyed with people talking to her too slowly. I saw it on her face today, she was like "Dad, god, I'm not three years old." Good sign.

51. Did you know that John played with Rufus Wainright on tour? Well, he did. And, weird coincidence, I saw Rufus Wainright (I think I'm spelling his name wrong) at a show at Brown University while John was playing with him, before I had ever even heard of John.

52. Did you know that the new computers with LED lights in the screens are all made by Uma's dad. Yeah, he owns Korea.

53. Did you know that Erik only owns one pair of shoes? They're wimpy canvas ones and it's 30 degrees today.

52. Did you know that Erica has a Hillary pin on her backpack? She gets annoyed if you accuse her of making the chick vote. I did.

53. Erik said his three magic numbers were 1, 3, and 5. Did you know that if you make each of Uma's letters a number U-M-A = 35. Spooky huh?

54. Did you notice that the last entry, about 1,3 and 5 was on #53. I did that without even noticing. Spookier.

55. Did you know that the stickers to get into the hospital are green today. Uma's favorite color is green. Spookiest.

56. Erik's pants are about 5 inches too long. Who buys pants that are that long? Does he think all that chocolate milk is going to make him taller?

57. I just figured out where the 1's in Erik's 1,3,5 thing are: Uma is on the 11th floor in room 1141. That's FIVE ones!

58. Erica's magic numbers are 696, or 969, I can't remember. It was her house number, her mailbox number at Oxy, and something else. I can't remember.

Back to Erik:

59. OKAY, this is me, ERIK, again.

60. I haven't read through what Erica and Marie wrote, but I read through what Adam wrote and he got a lot of shit wrong.

61. But before I start correcting him, I'm going to share a couple of Uma stories because I was just in there with her for a while.

62. She definitely seems really tired tonight, and I think that she's frustrated to be in a stupid fucking hospital bed and not really be able to communicate. And I think that Adam's right, she's definitely tired of us talking slowly to her. I'm trying to just talk normally to her, so she won't get annoyed with me. And she was still smiling occasionally at some of the things that I said, but there's also a sadness there, and I feel like that sadness is Uma becoming aware--really, truly aware--of her situation, and what she's going to have to go through. I don't know if "sadness" is the right word, but there's definitely a melancholy.

63. But we keep telling her that we're going to be here for her, we're going to help her stay strong. And we will. Urp has a long road of recovery ahead of her, and it will be difficult, but she will get through this.

64. She is inspiring so many people, through this fight of hers, and all of the inspired people are inspiring in and of themselves. I've gotten some amazing emails from friends, and some amazing emails from strangers. I am keeping all of them for Urp to read when she can.

65. Okay, I didn’t get to #100, and I didn’t correct all of the shit that Adam got wrong, but visiting hours are almost over and it’s time to say goodnight to Urp.

66. But before I sign off, “Getting Better” by the Beatles is stuck in my head right now, and it’s a really nice song to have stuck in your head. I’m just mentioning that because whenever I have a song stuck in my head that I DON’T want stuck in my head, I can usually get that song unstuck by sticking a new one in there, and “Getting Better” by the Beatles is certainly a good fucking song to use as a replacement stuck song.

67. Oh, and also before I sign off, I just read what Marie and Erica wrote, and the thing that Marie said about visualizing Uma getting off of her ventriculostomy tube (the draining tube) without needing a shunt—that’s the most important part of this whole dumb list, and if you remember anything from this blog post, that’s what you should remember. Visualize NO SHUNT, visualize a full neurological recovery, visualize that fucking brain of hers being perfect and serene, visualize the doctors telling us on Sunday that Uma’s intercranial pressure levels are good.

68. Thank you.

69. And toodles.

Dora's Butterfly Cage: A Waiting Room Story

Disclaimer: Some random child in the waiting room just dictated this story to us (Erica and Marie). She's very cute.


Once upon a time, there was a magic little girl. She went to the store and found a toy that w3as a Dora game. She loved the Dora game. She missed her Dora game. Then she saw a magic Dora game and she put it in her magic cage. The cage could turn into a butterfly. It flied all around the cage. The loved the cage; she hugged it and kissed it, cause she couldn't find it all day. Then she said, "I thinking for you, cage!" The cage also had a dog, she took the cage Dora and the dog in it. She walked the dog. Somewhere in a park.


By: Bria

Ghostwriters: erica & marie

pooped

so tired lately. not sure if the stress and shock of uma's condition is finally catching up or if, oops i forgot again, i'm still in chemotherapy. this is 'week 1', when i'm on the most drugs, so it very well could just be that. i slept a ton this weekend.

i guess someone who beat me in the sleeping category was ums though. her neurological functions are improving- she SMILES now!- and her eyes seem to focus more. this is just such wonderful news. i am going to pop in a movie and go to bed early, but first a quick Uma anecdote. When uma last came to visit me here in Boston, she brought with her a large drawing pad, an ample set of oil paints, and disposable palettes. Artsy crafty things had been keeping me stimulated and sane throughout the Intensification phase, but i have never been able to paint or draw well. i still suck but, because of uma, i found a new hobby that i really love. there's something so cathartic about painting; i have gotten lost for hours working on something. so now, every time i whip out those colors, i remember her thoughtfulness and am so grateful.

Marie's Voice

Sorry I didn't get this up in a more timely manner! and heeeeeere's Marie:

I really don’t want to do this, but Erica’s making me. Stupid best friend guilt trip. But I can’t complain too much…her arrival here in New York has completely changed my state of mind. I have never been so glad to see someone as I was to see her bounding off the Greyhound at Port Authority last night. (Yes, she was bounding. She looks amazing and healthy and wonderful.) The last 8 days here have been so completely draining in every way, as John and I have found it impossible not to notice and (over)react to every little movement and change and alarm beep that Uma and her monitors display. She shivers – we ask the nurses if she’s cold. Her heart rate and blood pressure are twice the normal, we plead with them not to make her body work so hard. A red light appears on her breathing machine – we demand to know what “tidal pressure” is and why it’s “too high!”. Thank God for Nithi, our calm voice of reason. By now, Day 11, we are in a much better place…though we kind of have to be. Now that the tubes are gone from her mouth and nose, and she is as comfortable as she can be, there is nothing to do but wait. I can’t say it will be easy to do that, but at least there are no more big decisions to be made for the time being. Just a slow process of healing and waiting for her to be ready. I am relieved that Erica is here, and that Erik is back as well. I really don’t want to leave, especially after such a short reunion with E…but I know Uma (and John) are in good hands. Don’t worry, Ums. I’ll be right back.

busta rhyme

Stuck in boston. Our Civic just won't budge from her parking spot and only SUVs are making it up our steep driveway. This is the plane we were supposed to be on. We're going to try to fly stand-by tomorrow but they're already canceling flights for tomorrow. We're very bummed. I guess the novelty of cold weather has just worn off.

So, I think I will compose a cheesy poem about Uma. Let's see...

In London, in England, in nineteen-seven-nine,
Ten fingers and toes, black hair oh-so-fine.
Little Uma would prattle and toddle around,
The bells on her ankles a tinkling sound.
The family soon moved across the sea,
An Edmonton Oilers' fan, young Uma would be.
The girl was an artist, a painting protegee,
in Tamil and English, all words she could say.
When Uma was ten, her Mom began to wonder,
just what would it be like, to live down under?
A few years later, some things went bad,
So Uma moved to Taiwan to live with her Dad.
In Taipei she studied at an American school,
thought acting, pop culture, night markets were cool.
After four years of high school, again the time came,
she was now very used to the whole moving game.
To Oxy she came with a suitcase of hope,
She met Marie, Al and Anna, and Elizabeth Pope.
From economics to math, her studies would shift,
Until she finally realized she had to follow her gift.
On the stage was where Uma most felt at home,
From there, her talents so brightly shone.
Uma made friends, a family of sorts,
She'd party and study- all with these cohorts.
She graduated from college and burst on the scene,
LA was not ready for stage skills so keen.
Of exportation to Canada we all grew wary,
until brave Uma decided that Erik she'd marry.
We all were assembled at the Evidence Room,
a beautiful bride and a most handsome groom.
Not too long after, sent from above,
Uma would meet her life's truest love.
John wooed the girl until she couldn't resist,
Her fears and cynicism would soon cease and desist.
Now Uma and John are engaged to be wed,
what cute babies they'll make in the matrimonial bed!
But here's where the story takes a new turn,
in a sleeping girl's heart, Uma's fire does burn.
She lies in a coma, in her beloved New York,
her friends send her prayers and they're starting to work.
Today Uma followed many things with her eyes,
Her right side she moves, her hand and her thighs.
The doctors are hopeful and we sure are too,
There's no doubt she's just resting and will awaken anew.
We're waiting for you Uma; you just take your time,
if you don't I will pester you with more and more rhymme.
I miss you and love you and believe through and through,
that this world cannot lose a beauty like you.

Ollie

i'm now back in boston, which i thought would be a respite from the 12 hour hospital days filled with worry and preoccupation. unfortunately, i'm just as anxious as i was in nyc.

the reason is that uma had a stroke. yeah, on top of everything else, she had a frickin stroke the other night. her brain is swelling. the docs say she has about a 20-30% chance of surviving this. and if she does survive it, she has about a 40% chance of living a "normal" life, with full funcion, etc. this is devastating news for everyone. still, although my stomach is clenching in fear and sadness, i hold on to those likelihoods, to that 30% chance, and believe she will endure. to the docs' confoundment (is that a word? confundity?), uma continues to move her right side despite the fact that the aneurysm and stroke were on the left side of her brain. she also still responds to voices by opening her eyes, although she just stares glassy-eyed at the ceiling. good girl, uma! be a mystery that contradicts science! show them what a rare and wonderfully strong person you are! defy our fears and please please please heal.

the promised uma anecdote...
Uma drives a green nissan sentra from sometime in the early 90's. She calls it Ollie, who knows why. Ollie isn't the MOST reliable vehicle ever, but I have come to realize that it might not all be Ollie's fault. Being the most mechanically minded of us, uma usually querries Marie on all things automotive. After driving Ollie for a few years, uma asked marie about a funny sound she was hearing while she drove. Marie asked if she had checked the oil. Uma said, "oil?". "yes", replied M. "You do get your oil changed, right?". Uma: "what does that mean?" Oops.

It's snowing today here in the northeast so, out of fear of the roads (thank you, Adam), I am taking the T (crazy seeing you on board this morning Melissa!) and need to commence my hour-long journey to the hospital. Tomorrow (if planes are flying), Jaci and I are off to San Francisco for Chinese New Year. I'm looking forward to seeing family and friends there. Oh and to the salt-and-pepper crab from R&G's. mmmm.

greybound

Winter exhibits an austere grace outside my bus as I roll south to NYC. My stomach remains in a near constant tightness in anticipation of seeing one of my best friends punctured by tubes, head half shaved, eyes partly opened, and in another dimension of sensibility that not one person on this planet really understands. Where is Uma’s soul right now? Does it hover within her, tallying the gentle and earnest words spoken to her by loved ones? Is it somewhere in the ether, chilling with other kindred spirits and taking a break from the difficulties of this life? I am nervous about the shock of seeing my Umita-bonita in such a fragile and vulnerable state. I’m pretty sure that I have effectively been in a state of denial about the worst-case-scenarios and just held fast to the belief that she will be ok. I guess that’s what scares me the most, that seeing her in the ICU will be reality slapping me in the face and I’m not going to be able to take it.

But I’m also really excited. For some reason, I feel really sure that my presence will somehow help. I’m not sure how, but I just believe that she’ll hear me or feel me or just know somehow how much I love her, how much I want her to come back. I’m desperate to talk to her, to make dumb jokes (know any dirty ones? -she’d appreciate those best), and kiss her cheek.

If you will indulge me, I would like to put a short anecdote about Uma in each of my blogs until she wakes up. Here’s numero uno.

When I got to my dorm room freshman year of college, Uma (my roommate) had already arrived. The brave girl from Taiwan had already pasted a collage of pictures on one of our walls comprised of various American superstars she’d ripped out of gossip and fashion magazines. The decoration was in the shape of a circle above the bed she had chosen. I think back on that fact and derive so much about Uma’s character from this small act. She was moving somewhere completely foreign (again) and needed to nest, to feel at home, to surround herself with what she liked and was comfortable with. Later on we’d laugh about her obsession with American cultural icons, but to me, her immediate creative act was a reflection of the artistry, spontaneity, and resourcefulness of my rommie.

Guardian Angel Marie

From Marie's lastest e-mail:

Another long day of waiting without a whole lot of progress, but some more real info (and we're still not going backwards!)...

John's brother, Wayne arrived this morning, and I think it will be a tremendous help to have him here to keep John sane. John and I continue to actively monitor Uma's every movement and every alarm on every one of her many machines, taking notes to ask doctors later, trying to get a handle on things and to better understand what's going on. Today was a little rough on her, as they tried to decrease her sedation levels. She reacted quite strongly, with vigorous movement on her left side, increased heart rate, etc. She definitely wants to wake up...but they still feel she's not quite ready. The neurological loop we discussed hasn't come around, though she continues to open her eyes and move when spoken to. Later in the afternoon she began shaking a bit - due to the sedation decrease, most likely - so they ultimately decided to put the level back where it was and give her some more time.

After the nightly rounds, the Doc Squad discussed with us some more concrete plans, as well as Dr. Hershfield's (Uma's main doctor in charge) feeling about what to expect right now. He told us that "in his heart of hearts", he feels that this is going to be a long haul. This is referring to this period of time in the hospital, waiting for her to awaken to undergo initial in-patient rehab. This is not a bad thing. In fact, we are relieved to finally hear what the doctor (and his 25 years of neurosurgery experience) has to say in the way of a prediction of some sort. One thing he discussed at the end of that conference included the phrase "when she undergoes her long-term rehab..." WHEN, not IF. This guy never commits to anything when he talks to patient's families, so we are heartened by the idea that he does think she will come through this, however difficult it may be.

As far as bare facts -

Her intercranial pressure is steady, and the drainage from her brain is definitely less red today - a good sign.

The testing lab grows more and more certain that the suspected infection in Uma's brain drainage tube was due to a contaminant in the sample, and she does not have that issue. [Her numbers didn't indicate an infection, so they got suspicious that maybe she was fine.] They are treating for it just in case, until the results come back for sure - probably tomorrow. The doctors say this is a very good thing (duh).

Her WBC count (white blood cell) and her blood pressure indicate that her pneumonia is improving. Hopefully they will not need to drain fluid with the needle, like they were considering earlier today. The doctors also seemed pleased with this.

They have decided to do the PEG (feeding tube into stomach) and probably also the trach (breathing tube into throat) on Friday. This will make her much more comfortable as she begins to wake up over the next however many days, and it will greatly reduce the chances of infections of all kinds. These sound scary, but are common and safe procedures that will be much better for Uma.

Please continue to send your good thoughts about Uma relaxing, healing, draining blood, completing neurologic loops, etc etc. As much as John and I want her up and awake already, she is just not ready...and that's fine. We can be patient.

Love,

Marie

uma-saurus

ya'll have got to check out the pictures from National Vandalize the World for Uma Day on Erik's blog: www.myyearofnewthings.blogspot.com. Join the movement!

The news on Uma is mixed. She has pnemonia and other infections. She hasn't woken up yet from her coma. However, the blood that was draining out of her head is NOT caused by another bleed and she continues to move parts of her body that might demonstrate less physical trauma than feared.
If you're confused about the controlled sedation versus coma thing, I was too. Apparently, the aneurysm caused her to go into a coma. A coma is like a "control, alt, delete" for the body, a sort of system reboot, and it is up to her brain when and if she comes out of it. The doctors sedate her further because they need her to remain completely still in order to properly heal and drain the fluids from her brain. To this end, they have had some difficulty as she is a stubborn fighter and sometimes still tries to buck and protest.
The other crazy concept is that she gets agitated by visitors. She can sense when someone enters her space and Marie says that you can actually watch her numbers climb. So, the docs have advised that visitations decrease. It's incredibly hard to be away from her. I am headed down there on Friday, awake or not, so perhaps I can be of help, if not to her, to John and her Dad.

Uma Updates from Erik

www.myyearofnewthings.blogspot.com

From Erik's Emails/Blogs:
Day 4

I like to think of Uma’s brain aneurysm as a sneaky way for her to get me to devote my entire blog to her. (When Uma reads this post, she’s totally going to roll her eyes and be like, “you’re so self-centered, trying to make my damned brain aneurysm about your blog.”) Fine, Urp, you’ve won—let’s just go ahead and start calling this blog “Uma’s Year of New Things.” Now finish absorbing and draining the blood around your brain so you can wake the fuck up, okay?

The health update for today is that she’s still progressing in the right direction, but the blood has been draining slower than the doctors had hoped. Basically, when the aneurysm burst, blood leaked out all over her brain and got into all of her brain’s little crevices (obviously there are medical terms I’m missing here) and they need to get all of that freaking blood out of there. The fact that the blood isn’t located in one spot—it’s everywhere—makes it more difficult to drain. The blood can also be reabsorbed into Uma’s body, but there’s nothing the doctors can do to make that happen, so they’ve got tubes that are draining out some of the blood and hoping that Uma’s body will absorb what those draining tubes aren’t getting. As a result of this whole blood drainage issue (Urp, are you still reading this post, or have you gotten completely tired of me going on and on and on about your blood?), they are probably going to keep her in this induced coma state for an extra few days. Basically, they reassess that every day, based on how well all of the draining is going.

We’re still not out of the stroke danger zone—they do neurological tests every hour and so far, very very good: there has not been any stroke activity. The doctors say that days 5 through 7 are the riskiest in terms of stroke activity, so if you are a prayer and visualizer (and I know that many of you are) (and I think all of your good vibes have been working so far, so let’s keep ‘em up), then aside from visualizing blood draining from her brain area, we should also be visualizing no stroke activity.

The other thing to visualize is full recovery (that’s what I keep saying over and over again in my head: “full recovery, full recovery, full recovery”) and movement in the right side of Uma’s body. The good news is that she’s moving more and more. Even though she’s on sedatives, she’s like a little snake in that bed, wriggling about. (Urp, that just got me thinking, maybe this whole brain aneurysm thing is your sneaky way of getting me to finally pony up and get you that second tattoo I’ve owed you for, like, the last two years?) (Look—I’m making your brain aneurysm all about me again.) (But anyway—do you still want a snake? Just say the word and the snake tattoo is yours.) (Emphasis on “say the word,” i.e. let’s get this healing done so you can wake the fuck up, ok?) There’s lots of movement on her left side and a little bit of movement on her right side, and that little movement is very positive (especially considering the fact that she’s on so many damned sedatives).

She’s been coughing, which they take as a sign that she’s sick and tired of having the ventilator in. And this morning I saw her moving both of her shoulders in a kind of wild shrugging motion. Bo left me a message last night that made me laugh—I had left him a message telling him about Uma’s various movements and he said that when she finds out that we’ve been staring at her and keeping track of every time she freaking moves her hands and feet, she’s going to be so creeped out by us. (You are so right, Bo.)

But for now, we can’t care whether or not she’s going to be creeped out, because we’re too focused on letting her know how much we all fucking love her and can’t wait to see her smiling again. (It’s still a shock to see Urp lying in that hospital bed, with all of the tubes and such.) (It’s weird.) (But she has the most punkass new hairdo I’ve ever seen, and I totally think she’ll approve.) (We’ve had several conversations in the past about how we both agree that women with bald heads are very fucking hot, and the ‘do that Urp’s currently sporting is half-bald/half long, which is recipe for a wickedly cool Mohawk.) (And can’t you all picture Uma rocking the Mohawk?) (Seriously.)

The doctors have asked us to visit Uma’s bedside in short bursts, because she can sense us and she can hear us and everytime someone talks to her she gets excited—which they’re trying to quell because they need her to relax. But Aida noticed something today (or maybe it was yesterday, the days kinda blend)—when she went into the room for one of her short visits with Uma, Uma wasn’t moving much at all—but Uma was facing the opposite direction of Aida…and then Aida walked to the other side of the bed and stood in Uma’s sightlines and suddenly Uma started moving like crazy. So Aida told me about this and then I went in to have a moment with Uma and she was already kinda moving when I walked in there, but when I moved into her sightline she started moving even more—so I take those two tests as proof that she’s definitely registering our presence.

When we’re not in the room with Uma, Uma’s visitors sit in this little lounge immediately next door. We sit and we pray and think good thoughts, and we make phone calls to give people Uma updates, and we gossip about Tom and Katie (or “Kate,” as she’s known by Tom) and Cameron and Justin (because we have to keep up with the gossip because when Uma wakes up she’s gonna want to know what she missed in the world of Us Magazine), and we share Uma stories, and we eat and drink Starbucks, and sometimes we nap and zone out. The lounge room can be boisterous and it’s rarely empty—in fact, Ray (the son of the man in the bed next to Uma) commented earlier today that Uma’s family and friends have taken over the entire lounge area, “which is great, because none of you are from New York, but she’s so loved and all of you are here—my dad has a brother who lives around the corner who hasn’t even visited the hospital once.” It feels good to keep that room crowded and I know that Uma’s beloved fiancé John especially appreciates it. In the last few days, Uma’s Lounge (hey, since Uma’s hijacked the name of this here blog, she might as well hijack the name of the hospital lounge, too) has been filled by the likes of John, me, my mom, Uma’s mom, Uma’s dad, Uma’s uncle, Uma’s grandmother, Aida, Uncle Dan, Jason, Marie, and Mike. I know lots of friends are planning on visiting in the coming weeks, and that will be great. I have to go back to California on Sunday night, but John will be here, and Marie is here for the next week too, so I will pass along updates as I get them—and I should be back at the hospital by Thursday or Friday. Thank you for all of the hundreds of emails and phone calls (I haven’t been able to reply to all of the emails, but thank you for the messages and I am relaying them all to Uma) (even though we’re not supposed to talk to her right now because they want her to rest, whenever I get an email or a message, I write it down so I can tell Uma later, and as I’m writing it down, I think it really hard so that maybe Uma will “feel” the message) (I’m pretty sure it’s working)

Keep the praying and the visualizing and the well wishes coming.

Lots of love to you all.
Labels: family


posted by Erik at 9:14 PM | 3 comments links to this post

Thursday, February 01, 2007
Urp

One of my closest friends in the world, Uma (aka Urp) (also known around these here blog parts as thedarkeruma)—family to me—had a brain aneurism burst this morning. Thankfully, she was in New York with her fiancé John and he was able to get her to the hospital. She was in surgery earlier today and now she’s under sedation, on a ventilator, because she’s got lots of blood around her brain. The doctors are keeping her under sedation for the time being, hoping that her body will rest and heal. That’s all I really know tonight, and I feel weird blogging about it except that I know how happy she'll be to know she has a blog post devoted entirely to her. (So Urp, when you wake up—like the guy in the bed next to you, who’s up and alert and giving the doctors hell—you’re going to see this blog post and you’d better be damned happy about it, okay?)

I just saw Urp and she’s in bad shape, but we have to have hope, so…

…if you’re the type of person who prays, please please please do some praying.

…if you’re not the type of person who prays, please think happy, healthy thoughts.

…yell a message to Uma out your window, as loud as you can. Make it as un-PC as possible, because Uma likes it that way.

…even if you read this blog and don’t know Uma…even if you’re just coming across this blog post, randomly—a blog reader passing in the night—please take a second to tell a dirty joke, think a hopeful thought, and send out some love into the ether…
Feb. 3

Hello friends...I know that several of you have helped spread word about Uma's health condition, and thank you for that. I apologize if this is the first you've heard about what's going on. Today was her third day in the ICU, and she's getting better every day--more specific information is below.

But first off: several people have asked me where they could send "get well" cards to Uma, and I cannot remember who specifically among you have asked, so I thought I'd send the info to all of you. Get Well Cards can be sent to Uma at:

St. Vincent's Hospital
Patient: Uma Nithipalan
c/o John Ballinger
Neurological ICU, 11th Floor
170 West 12th Street
New York, NY 10011

She's still in the Neurological ICU, and she will be for a while, so she cannot receive flowers or balloons or anything like that, but get well cards would be awesome. When she wakes up, I think she's going to be kinda stunned to find herself in the hospital, but knowing that all of you are pulling for her and thinking of her will mean a lot.

To give you an update on her health (and to fill you in on any blanks, if you don't know the whole story) (and I realize that some of you already have this information, but some of you don't, and since I'm sending a mass email to Friends of Uma, I'm going to start at square one), Uma had several seizures early Wednesday morning, at around 5:30 am. Fortunately, she was with John, and he called 911 immediately. She was going in and out of consciousness as they took her to the hospital, where they diagnosed that she'd had a brain aneurism, which had burst. Apparently you can have a brain aneurism and never even know it, and sometimes they just burst. Brain aneurisms are incredibly lame like that. By early Wednesday afternoon, Uma was in surgery, getting the aneurism "coiled," which means they cut it off from the rest of her system and it won't bother her anymore. But by that time, lots of blood had seeped into the area around her brain, which isn't good.

For the last two days they have been focusing on getting that blood out of there. They need her body to relax and heal while the blood is draining, so they've been giving her sedatives to keep her in an induced comatose state, while the blood drains. On Wednesday things looked really scary, but Uma has been steadily improving every day. The blood has been draining well and she's been moving a lot, which we take as a sign that she really wants to freaking wake up and get out of that stupid bed. The aneurism exploded in the left side of her brain, which means the right side of her body could be affected, but today we saw her move her right shoulder quite vigorously, and she even moved her right foot ever so slightly and her right arm just a bit too. All good signs--especially considering the fact that she's supposed to be in a coma and being completely still and relaxed so her body can heal. (The girl just doesn't wanna cooperate--it almost looks like she's dancing in the bed.)

They are going to stop inducing the coma in two or three days, after which they'll be able to do a Cat Scan and we'll know a lot more about what kind of rehab and recovery Uma will be facing. These are all really positive things to be thinking about, as the doctors weren't even talking about "rehab and recovery" on Wednesday, but now they are.

If you're the type of person who prays or visualizes things, please focus on the blood draining from around her brain and on Uma waking up with full movement in the right side of her body.

John and I both want to thank you all for all of your cards and well wishes and prayers and love. Keep 'em coming.

Uma is a fuckin' fighter and we're gonna help her get through this.

Please feel free to forward this to any of Uma's friends who I might have forgotten to send this to.

Love to you all,
Erik

Uma, my love

Uma suffered from a brain aneurysm yesterday morning while visiting her fiance in New York city. She was rushed to the hospital and underwent a "successful" surgery. They have her now sedated while the fluid/swelling in her brain subsides; this will likely take 5-7 days. At that point, they will be able to assess the brain damage with scans, etc. John, Erik, Erik's Mom and Uncle, Uma's Dad, and Jason are all there. I plan to go down as soon as possible. I am in a state of shock and despair. This world is not ready to let Uma go. No. Fucking soul-carrying birds, don't you caw at her.
Please pray for her and her family.

Uma singing kareoke on a recent trip to Boston.

NY Times article

Too Young for This: Facing Cancer Under 40
New York Times, January 30, 2007

blogger frogger

Raise your hand if Fox News makes you want to throw up.
It’s more nauseating than chemotherapy. There’s this big hubbub about them attempting to reveal that Senator Barack Obama (Oxy alumnus) was trained as an America-hating Islamic radical when he lived as a child in Indonesia. Gag. Finally, we have a presidential hopeful who has actually traveled abroad and they want to defame his experiences by playing upon the flyover’s fears. Jamie, I know we’re both reading Dreams From My Father. Can you believe the fear-mongering, speculating, fact-checkless excuse for journalism of everyone’s favorite conservative network? If I knew anyone who thought Fox News wasn’t completely scripted by their moneyed interests, I’d be more afraid than angry. Now here’s the twisty twist: apparently Clinton’s camp supplied this bogus story to Fox News. Yikes! The democratic primaries are gonna be bloody, I fear. But, I can’t really remember when we’ve gotten to choose from a palette of exceptional candidates for national office instead of settling for the lesser of evil knievels. (What about New Mexico’s Bill Richardson (Fletcher alumnus)? Then there’s Kucinich, Nader, Gore, Edwards. All yummy. My political fantasy… Clinton/Richardson in 08, Obama/Pelosi in 16. Dude, did I just day dream about the year 2016? Does that count as hopeful projection or science fiction?)

So, what did ya’ll think of the State of the Union tonight? I liked Bush’s sober tone and his attention to energy issues. I didn’t like his usual affiliation of Al Qaida with Iraq (where does he get this shit?) nor the statistics skewed to make No Child Left Behind look like good policy. Jim Webb did a fantastic job with the democratic response (I think). As Moore pointed out in Fahrenheit 911, it’s all too rare seeing the top echelons of our society with children on the military front lines. I look forward to my commute tomorrow to hear npr’s commentaries on the speeches.


On the home front. My doctor is full of infinitives (is that the right term?). He says that he has

• Never seen anyone present with such a high white blood cell count. Boo.
• Never seen anyone have such an emotionally rough time during the 30 weeks of Intensification. Boo II.
• Never seen anyone do so well physically during the 30 weeks of Intensification. Yay!
• Never seen anyone doing so well entering the Maintenance phase. Yay II!

Cool. So I should get at least four awards for being a freak.
Here’s the rub. I am trying to decide what to do with my newly incarnate desire for movin’ and shakin’. (And I don’t mean dancing, although Jaci’s discovery of Regina Spektor’s tunes have me hopping around our condo practicing body rolls.) In other words, time is taking on an entirely new dimension for me and sitting around is, well, now a bit boring. I guess it’s always been boring, but I used to not have any choice. How did a year go by without working? Now, I would like to take three courses and get some kind of part-time work/internship. My family and med staff urge me to chill out, remind me that I am still in chemotherapy and that I need time to heal. They think that two courses is plenty. Ugh…
I don’t think that a healthy response to a near-death experience is to remain holed up, freaking out over every possible sign of recurrent illness. I have energy, so I wanna use it. My brain- praise Vishnu!- works again (more or less), so I want to use it. It’s almost an act of gratitude to be actively engaged in the world if you can, don’t you think? Also, not that life is a race- FAR from it- but I really do not want to be in grad school forever. School is great, but I really like the professional life: sans homework, academic impracticality, and poverty. And, finally, I am tired of depending on the gracious generosity of others; cancer-smansher, i need to start helping out financially. Anyway, we’ll see how goes this battle...


Lastly, (juxtaposed with the bikini-clad pictures below) Boston is BEAUTIFUL with her dusting of white powder. Everything looks different and bright under this vanilla frosting. Perhaps because it’s novel, perhaps because it’s not that cold or inconvenient yet, we’re loving it.

Mexico Pics

Pictures from Playa del Carmen on the Mayan Riviera. Cave diving, morning yoga, breakfasts in the jungle, headed out for salsa dancing. James, can you see the five o'clock shadow?

back to life. back to reality.

Right now, I'm in the Fletcher library having attending my first class this morning and waiting to meet Katie, Evelyn, and Abdul for lunch. Aahh, it feels GOOD to be here. It feels GOOD to think. It feels GOOD to drive, to have responsibilities, to feel a sense of place. There are so many new faces swirling around campus, but most of them sport smiles and I hope to meet lots of people over the next few weeks. I'm still nervous about this semester (the reading, the commute, tuition cost), but know that if it weren't challenging, there would be no sense of satisfaction or accomplishment.

Oh yeah- we got back from Mexico yesterday. Our luggage, however, has not.
We had a wonderful time in Playa del Carmen: sunning, eating, shopping, splunking through caves, snorkeling with turtles, getting spa treatments and just being together. I will put up some pictures when I get home. I really hope that such vacations- groups of friends gathering from various corners of the world- are a hallmark of our lives. Thank you guys so much for coming!!

Alright, I need to go sell my medications for tuition money now. Anyone like Oxycontin? medicinal mary jane? My prices are good; let's make a deal.

[yikes! I'm just KIDDING, dr. S!!]

The holidays were sweet and calm, marked by integral family members (mom was here for a few days) and some new family members... It seemed like gifts were especially thoughtful; maybe with less moola and more time, we were able to get that really special gift or make something from scratch that means more.

New year's eve was a little too sedate. Jaci couldn't make it past 11:15, so i rang in the new one solo. We had decided that the trip to Mexico would be the true celebration, but 11:15?? honestly?? oh well, it WAS damn cold outside and First Night seemed to require way too much organization.

M E X I C O. My brain is consumed by this upcoming vacation. I can't believe seven of us are able to meet down on the yucatan in less than a week: Leslie, Jonathan, Anita, Jamie, Anna, Jaci, and me. Bess is trying to work it still and Josh (Anita's husband) is a last minute possibility too. We're staying in Playa del Carmen, south of Cancun. We hear stunning reports on the locale and were lucky enough to find a beautiful condo that we can all share for a pittance. Ahhhh, why doesn't time tick by faster!

***

Yesterday, I went to Fletcher to talk with the registrar, dean, and financial aid director about me returning to grad school in a couple weeks. Everyone was extremely flexible and kind and it looks like I'll be taking two courses beginning on January 17! I'm nervous for failure and feel guilty for getting my family in San Francisco excited about me moving back this spring, but I know that this is the right thing for me to do. With most of the "fog" lifted from my chemo brain, I need some serious stimulation and sense of productivity. Also, if it weren't for the fact that I still have to be at the hospital once a week, I might be more inclined to travel or do something less stressful, like move to SF, until I'm really don't with chemo. As it is though, I figure I might as well get to work on this degree and learn about subject matter that I love- international relations, politics, economics, development, history, blah blah blah- since I'm pretty tied to the US 'till March 08. (Except for the 5-6 day jaunts to Mexico, Cali, Oregon, British Columbia, Nashville or wherever else ya'll want to go!)

I also visited the Tufts Medical Center to bring them a gift for, well there's no way to be less dramatic, saving my life a year ago. Amazingly, the staff remembered me and were so touched by me coming by. With a black 5-o'clock shadow on my head, sprouting eyebrows and eyelashes, and a few more pounds on my frame, they were also so ecstatic to see a rather healthy me (since some of them actually have been following this blog!). I also ran into several friends around campus and continue to be amazed at what an amazing community Fletcher is and to be grateful at everyone's kindness and the fact that people still remember me.

***

Two weeks ago, because I am what the nurses call an 'enigma', I was feeling great but my blood counts looked terrible and I was released sans treatment. So, having undergone Week One this week, I am all high on my last dose of full-intensity steroids, having difficulty sleeping- a stark change from the 14-hour nights I was imprisoned by the month before. I'm a little nervous for the expected 'coming down off the steroids' aches and pains when we're in Playa del Carmen, but am eager, at the end of this cycle to officially say that I am through with Intensification and am beginning MAINTENANCE!

Sorry such a boring blog. But that's the latest from Beantown.

these days, who has time to self-actualize?

jaci and i attended an all-day reiki workshop last week. reiki is a japanese technique for stress reduction and relaxation that also promotes healing. it is administered by "laying on hands" and is based on the idea that an unseen "life force energy" flows through us and is what causes us to be alive. we learned how to perform reiki on ourselves and others and had the really cool experience of having four other participants (eight hands!) moving over us during group practice. i've seen that sort of thing advertised in thailand, but this wasn't that kind of thing. we both have a healthy skepticism about some of the funkier complementary therapies, but can't deny the strange calm and pleasure one gets from reiki. i'd recommend it- and better yet, next time I see you, if you remind me, I'd love to do a session on you.

One of the things the instructor mentioned briefly was maslow's hierarchy of needs. it struck me that, in this period of trial and healing, each phase just seems more intense, like hiking up the contrast and brightness when doctoring a photograph. what i mean when you consider the broader pieces of the triangle in terms of cancer are pretty obvious, but the pinnacle, "self-actualization" and "transcendence", is something I think I've only begun to explore now, this crazy year. And, i wonder if it's even possible for most of us to dabble in this realm while juggling all of our other needs and responsibilities. i haven't had time (or, made time) to paint a picture, sew a dress, knit a scarf, redecorate for the hell of it, have a baking day, arrange flowers or write stories since I was a little girl. not to mention the time to ponder life and love, family and friendship, from the vantage point of almost losing the first one, ending a passionate but volatile engagement, and standing in awe at the generosity of body and spirit of the latters. or read books about different faiths, theology, philosophy, poetry. and you know what? it's SO worth it. NOT that cancer is worth it, but it is worth it to work towards higher echelons of being; it's worth it to appreciate beauty and to take time to let your creativity flow. would my questioning and cynical soul have taken the time to become more spiritual at some point? would an 80-yr-old me look back and be able to count so many people so dear? would creative outlets have found their way into my life anyway? who knows. but I'm super glad they did.

century club

oh baby! i would like to enthusiastically report that asparaginase is the devil and now that i no longer take said drug, i feel better than i've felt in months. i have gained 15 lbs, i can walk/cook/shop/drive, and the fog of confusion/depression/pain has gone from 1970s-L.A.-smog to (what I imagine) the air in the rocky mtns to feel like. i am so happy.

so, i have moved from "intensification" to "maintenance", which is another year and a half of chemo, but if i continue to feel as good as i have the past few weeks, i hope to be a lot more active in the next 15 months. for starters, i'm headed to mexico. anyone want to come? truly, a troop of us are going to cancun in mid-january to relax and flee from the cold. flights are dirt cheap-- less than if you have been considering flying out to visit Boston...

i feel guilty going to mexico. like it is super extravagant and i should still be in bed recovering. but then i think, f--- that. i'm really not me if i'm not traveling and exploring. i haven't been me for a year now and i'm ready to start doing some adventuring! yipee!

the other crazy change in me is in future outlook. in that, i have one. not to sound over dramatic, but it has been hard to even consider what i would do post-cancer. cognitively, i could sort-of accept that i wouldn't always feel so weak and crappy, but maybe i didn't really believe it. thinking about the future was somehow depressing, but lately, my perspective has shifted. now it seems like there is no shortage of good options. i'm trying to decide whether or not to take a course or two at Fletcher, whether to move back to the Bay Area, or perhaps whether to travel to China, buy all the cute clothes I can find, and open a boutique somewhere I'd love to live like San Diego or New Mexico! and this is all just thinking about "short-run" plans.

Friends, food, fillies, and a flute

Jonathan:

"This has been the best visit with Erica I have had in the past year. The
change in her medication along with the finishing of one of her chemo
injections has added more sparkle to the already glowing Erica we all know
and love. Erica, Jaci, Jamie and I paled around the city enjoying some of
the most fabulous meals I have ever had...check out Dulce Vida?? in the
little Italy section of Boston for the best Italian food ever. There was
plenty of down time just relaxing at Erica and Jaci's apartment just truly
spending wonderful time together. The weather overall was excellent and
between Jaci's flute playing, Erica's comments on her neighbors, Jamie's
juggling three cell phones maintaining her busy work life in LA from Erica's
couch and my getting lost everday driving in Boston, the best part was..."



Jamie:

"...arriving into Boston on Thursday morning, greeted by amazing weather AND by a surprisingly strong and energetic Erica. After I arrived, I was informed that I had a surprise awaiting me on Saturday morning. Erica, Jaci, and Jon then spent the next two days trying their hardest not to spoil the surprise . . . and they almost made it. Literally, no more than five minutes before we were to walk out the door, Jaci (the queen of secret keeping, no joke) spilled the beans . . . we were going horseback riding!


Erica, being the amazing friend that she is, remembered that I had never been horseback riding and signed us all up for a trail ride. An hour’s drive out to a tiny little town called Agawam, and we were ready to saddle up. Erica, Jaci, Jon, and myself, mounted White Stallion, Gramps, L-7, and Gilligan and took off. We spent the next hour riding through a beautiful forest, singing songs, and laughing our heads off. Jaci lead the way (well actually the crazy trail guide led the way) but she was always right behind him looking very natural and stoic on her horse. I followed close behind feeling very comfortable and excited about my new experience. Erica and Jon brought up the rear, all the while marveling at the amazing scenery (Erica), and holding on for dear life (Jon). Just kidding Pup!


Riding through the forest with three of the most amazing friends a girl could ever have, I realized how lucky we all are to have each other, and the reason we do, is Erica. I have always said that Erica has the most amazing ability to bring people together, and more important, keep them together. Her charm, sense of humor, wit, intelligence, and selflessness are ever present and no amount of chemo can strip her of that. Her ability to see the beauty in everyone and everything during such trying times is just one more reason why I am so proud to call her my friend.


After we said our goodbyes to our new found filly friends, we headed back to Boston and, on our way, discovered Jaci’s hidden talent . . ."



"...yes yes, it is true: i am like the Pied Piper of Boston with the recorder.
Jealous??

All that Jonathan said of Erica's newfound energy, outlook, and personality
is TRUE!! She has been a whole new person--well actually, more like a whole
OLD person, the same spirited chic we all know. We are pretty sure that it
is attributed to a change in her medication. For all intents and purposes,
she has begun her final phase of treatment: maintainance. This means that
for the next 15 months (calculated so that she is treated for two full years
since the date of remission) she will no longer be receiving one particular
chemotherapy that is TOUGH (to put it kindly) called Asparaginase. So we're
told that this drug is highly effective and crucial to her treatment, but
from the patient's perspective, this is one drug that continuously knocks
her down. It is given once a week for 30 weeks (yea: 30 WEEKS!!) in a phase
called "Intensification". (I'll let you figure that one out.) So now that
she is out of these 30 weeks, it was like a switch was turned off and the
fog has lifted... It's funny that as we drive around Boston to places she's
been to many times, she is now for the first time SEEING it. She notices
scenary, buildings, directions... just that we are simply leaving the house
regularly is amazing.

Another change from the Intensification phase to the Maintainance phase is
the lowering of her steroids which we're told will have a huge impact on
her. As she came off 5 days of high-dose steroids every three weeks, it
caused her muscles to ache, back to hurt, and as you can imagine, mood
alterations. Although we have a few more weeks left of the high-dose
steroids, it is literally a JOY to see how well Erica is adapting back to a
daily routine. It only makes me more excited for the change in steroids as
I imagine she will keep improving!

She told me the other day how much better she feels by simply that she walks
into the kitchen when she's hungry and fixes a meal. Now, this may not seem
like much to you, but for the last 10 months, she was unable to do this
simple task. Standing for such a long period of time was impossible because
the muscles in her legs wouldn't allow her. This only frustrated her more
to know that she couldn't do it and she would try to force herself to do
these things, building the disappointment if she failed.... Now, she can. I
don't think I can express how happy the little things can make me. :)"

thanks mom for writing!

Even though it was a long and tiring trip for Erica, it was so wonderful to have her & Jaci in San Francisco last month. She blossomed and basked under the love and warmth of family and close friends and almost forgot all about the pain and aches and the endless medications she has to endure everyday. She felt rejuvenated and refreshed with all support and loving care everyone showered upon her, not to mention the fine dining she was subjected to everyday during her five days’ stay. Jaci didn’t do too shabbily either. She was treated three out of her five nights with her favorite dish – West Coast Dungeness crabs…yum!

On Wednesday, at Dana Farber, Erica got her last shot of Asparaginase, the
experimental chemo drug she was on. Jaci bought Dunkin’ Donuts (Kent, you would be proud of her bearing gifts into the Infusion Room for the nurses & staff) to celebrate this auspicious date with everyone. The next phase of her protocol will start in a couple of weeks beginning again with series of three week cycles of chemo/drugs/steroids but of a lesser dosage. This fourth maintenance phase will last through to February 2008, and her physician team has assured her that she will feel much better during this phase and be more her old self again. She is of course skeptical but we’re all positive towards the outlook.

I have been here in Boston now for a week and the weather has been unseasonably warm for this time of year. It did rain a couple of days but otherwise it’s been really nice. Jaci is planning a fabulous Thanksgiving dinner which she will be cooking, with Erica as her sous chef and me as a tablescape doer/planner/whatever. Anyway, that is the job I have been allocated. Gioia, Evelyn and Akshay will grace our table that evening as this will be their first American Thanksgiving. Luke & Denny are leaving today for the bay area where they will spend the holidays with their respective families. Denny so misses his baby Devon & Jacie.

Erica & Jaci both join me in wishing everyone a very happy Thanksgiving and whatever trials and tribulations this past year brought, perhaps there is always that proverbial silver lining hovering somewhere for us to uncover and still be thankful for all the blessings we did receive although perhaps at this point in time, we are unaware of what they may be.
Peace, blessings & love…

Slick

Local teen files lawsuit over cancer
By Malia Spencer/SENIOR STAFF WRITER


A Santa Maria teen is the latest resident in the Sunrise Hills neighborhood to file suit against oil companies for environmental contamination there resulting from years of oil production in the area.

Scott Chenoweth, 18, filed suit Thursday in Santa Barbara County Superior Court against six oil companies, claiming his diagnosis of acute lymphoblastic leukemia was the result of living in a neighborhood contaminated by past oil drilling.

The suit filed Thursday claims that officials with Unocal, Union Oil Company, Chevron, ConocoPhilips, Kerr-McGee, and Anadarko Petroleum Corporation failed to properly decommission the site and that their negligence allowed the contamination of the Sunrise Hills neighborhood, which was built after oil production ceased.

Chenoweth, who was diagnosed in July, has lived at 750 Raintree Drive all of his life, the suit states. A relative said Thursday he was out of town and that the family would have no immediate comment.

The suit asks for general damages, medical expenses, economic losses, the cost of the suit and punitive damages.

Chenoweth, who was featured by the Santa Maria Times in August, graduated from St. Joseph High School and had planned to attend Hancock College's firefighter program this fall. He told the paper at that time his plans were on hold.

Gonzalo Garcia, a spokesman for Chevron, said he could not comment because he had not seen the suit.

The company does not comment on current litigation, he added.

Garcia said he was sorry to hear that the suit had been filed. “Always our preference is to work with the involved homeowners,” Garcia said.

Officials from ConocoPhilips and Kerr-McGee could not be reached.

The Sunrise Hills neighborhood is in the midst of cleanup effort launched by the oil companies to find the contaminated areas and replace them with clean soil.

Throughout the neighborhood the companies are finding and removing sumps, or pits that were dug next to oil wells to collect crude oil, mud, water and other debris during production.

However, the process of testing and locating contamination is long and some residents have resorted to litigation in order to find relief.

Chenoweth's parents, Jeff and Lisa Chenoweth, were among several plaintiffs in a suit filed June 22 with the same law firm of Cotchett, Pitre, Simon & McCarthy against the oil companies.

Along the Chenoweths' street, Chevron purchased and demolished three homes, at 753, 759 and 767 Raintree Drive, in order to clean up the sites.

Other companies also bought and demolished homes in the neighborhood.

In the past, when oil wells were decommissioned, the sumps were either buried or left to dry out, unmarked. That met legal standards at the time, oil company officials have said.

Malia Spencer can be reached at 739-2219 or mspencer@santamariatimes.com.

Nov. 3, 2006

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here is the map. Raintree is right behind our house. our backyards are tangent.