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

***

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

Martha Stewart's Fall Favorites for You and Your Family to Enjoy

First of all, happy halloween and happy birthday to Lola and Jon! and happy belated birthday to Ted! anything else happy in the world? i think that sums it up. furrowboofrown.

when jaci and i were eating dinner tonight, she suddenly whispered SHHH! and her hand shot out with panther-like agility and precision and she flipped off our light switch. what?? i hissed back over our now-shadowed lasagna. "i hear trick or treaters! and we don't have any candy!" wow, no sound passeth thru my lips henceforth. but we giggled. and hovered. in the dark. until we were sure kids would bypass our door and we wouldn't have to face them. To add to our unusual hollow-ween spirit, i actually heard jaci say on her cell phone that she "expects our pumpkins to be smashed against our door by the morning". i do not think that will happen. a) they are the small kind, not the rotting carved kind- decorative, autumnal; not a fire hazard or a satanic symbol. b) delivery guys never find our door; assuming drunk local teenagers will seems almost arrogant. we'll see...

Second, sweet potato pie is the best dessert on the planet. Make it from scratch and make it immediately. My tongue does not appreciate dessert while on chemo, but my memory does.

Third. At Fletcher, you are expected to take 4 courses per semester. Go-getters who clamor for 5 receive the gentle lecture about how they would miss out on too much of the experience that transpires outside the classroom: the speakers, the cultural events, the parties. However, I remember the only complaint I really heard consistently during my stint there was how, still, the worse thing about Fletcher was having to choose between classwork and attending the speech of a foreign dignitary, a festival celebrating a country's culture, or even touring Boston's main historical sites. So, dear professors, if any of you happen upon this, my friends/your students are learning a ton, but they seem so overtasked by midterms that their Fletcher "experience" is stymied. There are people at the school who feel that the "D" in the MALD degree has been forgotten; from an ex-foreign service officer, Diplomacy is best learned and practiced at happy hour. Just some unfiltered observation from a drop-out.

Politically-sensitive, pls skip next paragRANT. Apathetic or progressive, rock on.

Number Three, speaking of mid-terms... does anyone care about the mid-term elections coming up? i'm sure adam seiden and susan massey are on top of it, but anyone else? did moveon.org's servers crash (or did their grassroots internet magic die when the supreme court got to pick our pres?) and who's willing to give the Young Dems their cell phone number in the effort to mobilize via mobiles. not me! i'm just sad that politics are so stale. i'm sad that the commercials on TV seem like they could have been written by the same old mud-slinging/cheesy campaign managers. Everyone "hates" politics BUT everyone has an opinion. Everyone can see straight through the smoke and mirrors of campaign promises and most people agree that it is unfair that you need to be rich to mount a successful attempt at higher public office. but what changes? AND, every four years (can't wait for 08), when people again question "why do we have an electoral college again?" "did YOU elect our state's 'electors'? who are they?'", we scratch our heads and believe that there must be something good about it. Like the theory of relativity which has been explained to me by various patient geniuses, I just cannot get it through my thick skull where the electoral college's place is in modern presidential elections. But, like the rest of our mass citizenry, I forget the illogical non-democratic system that elected our current president despite losing the popular vote, only to be reminded when the media pretends to question it four years later. I'm pretty sure the Men in Black use a satellite version of their forgetfulness-flasher on all of the US just before inauguration day. Thank goodness. (I just feel bad for the rest of the world who doesn't get the placating effects of a forgetfulness-flasher [read: economic prosperity, wag-the-dog press,a million staged "reality" shows], so the rest of the world thinks we're silicone-wasp-cowboys & playgirls and we wonder why. don't be a hater Osama, don't be snobby Pierre,come on duuuude.) One more thing, if you don't think about anything but gay marriage and abortion when you go to the polls, please please read more. My blog is mean-spirited and slanted and angry- go to your state's non-partisan election guidance page(start here maybe). and, if you're too busy or you live in the famously-prop-happy state of California, you can just google "voter information" and certain groups (like gun activists or pro-choicers or hispanics) will TELL you who to vote for.

Jaci is taking a course on the madness of crowds and although i rant and rage, I am a cow in the best herd on the planet. the US has glorious faults, but i wouldn't trade our history or our system for that of any other country. patriotism is an essential part of a constructive rant and it's only because i care that this stupid stuff keeps me up at night. Moooooo.

Extreme San Francisco

Last weekend was the long-awaited trip to surprise Kellie and Jennie Edwards as they ran in the Nike Women's Marathon. This was the gift and brainchild of Kellie's boyfriend, James, who, along with Leslie (their sister and my best friend from high school), kept the trip a secret for months! I was amazed and humbled to see so many Team in Training runners and to see my name on the back of Kellie and Jennie's singlets. All of our eyes filled up when we saw each other, Leslie wheeling me through the union square crowd. Thank you girls! It meant so much to me. click--article in SF Chronicle

We saw everyone we could in SF. Friends, cousins, aunties, uncles came out for the various feasts hosted by my generous aunts and uncles. It was such fun and I think feelings of support and encouragement were refreshed for both Jaci and me.


It was a go-go-go five days though, and now I wonder if I'm paying the price. I'm extremely tired and really can't believe I'm even typing away at this blog. My counts were too low this 'hospital wednesday' to administer all the chemo, but i still always get my favorite shot: mmmmm, Aspariganase. Maybe the introduction to the world of the press makes me feel like reporting back in a timely manner. hee hee.

click--press release
Yeah, my auntie lillian held a press conference where she (a somewhat well-known judge and politician), the head of the asian american donor program, a city councilwoman, and three of us sickies encouraged everyone, especially minorities or those of mixed race, to register. The dramatic climax was when lillian cut ten inches from her long thick black hair (jaci was the barber) to donate to Locks of Love, a company that makes wigs for cancer patients. The message was simple and good: "do what you can". Time, money, hair, registration, blood donation, education. I liked the sound of that.

So much more happened in the whirl of our trip. Wise words I want to write in this journal, new opportunities and ideas for moving back to California, seeing cousins I hadn't seen in years, and two ready-to-pop cousins whose beautiful swollen tummies remind me just how long its been since I've been home.

MAGI

I feel like extolling the virtues of a few people in my life who I mean to mention more often here and who bring me great joy.

"Three Wise Men" I know:

Kent Cummings- When Kent found out I was sick in Boston, he visited me in the hospital nearly every day. He brought numerous insights into the apartment search process and often used his truck to (first, get lost) and then help us buy a bed, move a dog, get to dinner, etc. He's selfless, loyal and can sing karaoke like nobody's business. Kent's one of those people who can just chill; who don't consult their watch when they're hanging out with you (not even on the sly) because they understand that quality time is not scheduled or slotted. I admire the way he pauses and thinks before he speaks, so you can either rely on him for fully-grown intelligent thought or a witty comment that leaves you in stitches. One of the wisest things Kent has done is to recently propose to another awesome soul, Joyce Lee, and they plan to get married next fall. Miss you guys.

Jonathan Endrikat- Jon can quote movie lines and song lyrics better than anyone I know. He's not afraid to burst into song on an answering machine, to see the genius in Tolkien, or to reread J.K. Rawlings. Jonathan is wise because he always seeks to learn more about current events and other cultures, particularly by getting three times his money's worth at all-you-can-eat sushi. (Where does it go, Beanpole?) Jon's in biz school, undoubtedly surrounded by people seeking bigger paychecks upon graduating with an MBA. I find it refreshing and inspiring that Jon went in with a goal and it has only become more clear through his studies: he wants to coach tennis. Jaci told me that was his goal five years ago and I am sure he will have passion for his work at some kick-ass D1 school come next year. Jon's SUPER funny, but he's deeply wise too. He looks out for me, wears my silly gear, and is always respectful to my sister and my family. I'm proud to consider him like my brother.

Dr. Andres Sirulnik- This guy saved my life. He held my hand the first night I was in the ER and there were a dozen people around my cot and someone was sliding a big fat needle into my groin vein. He made me giggle then and he does to this day. He also frequently says he's going to "kick my ass" with that great Argentinian accent. Whenever I say I can't take it anymore, that I want to quit chemo, that I'd rather die... he says he'll "kick my ass". So, who can argue with that? You can google him all you want and find out how esteemed he is in his field, etc, but what that can't tell you, but I can, is that my doctor has emotional intelligence and incredible compassion for his patients (i have wondered where the empathy goes when he is retrieving spinal fluid or mining for bone marrow, but I suppose it's a Hippocratic oath thing and he has to do it). Dr. Sirulnik understands that cancer treatment is not only physical; in fact, it's mostly mental and he has guided me through some very dark times. I don't know too many people in Boston, but I feel blessed to know, be advised by, and cared for by this man.

Seattle Hope

picture of st maarten


Did anyone see last Thursday's Grey's Anatomy? (right, who didn't?) well, i really identified with two characters (you might be thinking meredeth with mcdreamy and o'donnel fighting over who gets to warm up my nueropathetic feet, but no). First, there was a young patient in for surgery due to lung cancer. This woman said that she had never smoked a cigarette in her life, never smoked pot, never even drank. She excercised, ate right, was faithful to her cheating husband, etc etc. And now, she was going in for a surgery with a 40% chance of survival and she felt that chocolate- boxes of it- were now her due. She was binging on cakes, racing other patients in their wheelchairs, even managed to seduce a "poor" intern into a quickie in the bathroom.

If you saw it, or if this little summary makes sense, I just wanted to say that I heard her hysterical confusion at her diagnosis crystal clear. The "why/how" questions cannot be answered in most likelihood, so I have not spent much time considering them. Was it God? Carcinogens I was specifically exposed to? Stress? A voo-doo curse? People wonder if I'm disgusted by smokers, but I'm not at all. God bless those 100-yr-old alcoholics or those people (not naming any names) who haven't eaten a vegetable in their entire life and are fit as a fiddle. It just goes to show, you never know.

The other component of her story which I could understand though, thankfully, not through first-person experience was the issue of regret. I have been so fortunate in my life to have had opportunities come my way, whether they be travel, love, jobs, education, adventures, and I have rarely (I almost want to put never) said no. Some people think you should wait until you're married so that you can experience So-and-So place together, or some people think there will be other chances to do X and put it off, or they credit others' flaws for not giving in to love or forgiveness. When I quit the Foreign Service, I thought I finally understood regret. But from this vantage point, alive for one thing!, living in a beautiful city with my amazing sister, those regrets which would make my stomach turn and my heart ache, have all but melted away. I get strength from perusing my photo albums; I think they almost have to remind me of who I am or was, and I'm kinda proud. (No shit! I hiked that!) I'm deeply sorry for the woman on the TV show said "no or maybe later" so many times but I've said to many of my friends when we're chatting about this disease: "I'm just glad I said yes." Cuz, well, you never know.

It's almost cliche, but if you died tomorrow, would you have regrets? If you had a near-death experience, would you be struck by all the things you still have yet to "do"? Perhaps it's all the drugs I've been on, but I am so grateful to report that YEEHAW I feel like I've done and seen more than most and could die tomorrow with neither fear nor regret. [I guess the flip side of that coin is that I often want to die tomorrow because i'm such a wussy about my therapies and have so far led a pretty active lifestyle. But let's stay positive here.)

Wow, third paragraph and I'm still talking about Grey's Anatomy?? Apologies; this one will be quick. The other patient I identified with was a young man whose brain tumor caused him to say basically whatever he thought. He'd comment on people's body odor or point out obvious chemistry between his docs, etc. I found him to be a really likeable character (but he dies). To some degree, I find myself a lot more honest, to the point of probably being rude. A friend of mine, after a stressful divorce, mentioned this same thing to me. Maybe it's a mixture of that apathy that comes when you realize life sucks way worse than your little optimistic mind had thought, plus a thicker skin all around. Whatever it is, it's fun being a little more direct or assertive or gross, as the case may be.

So, Uma pretty much summed up the haps here. Btw, I am using the paints you brought me and would almost say I'm sort-of addicted, like how i am to crosswords. such activities really take you away. oh and i got four responses for pro-bono guitar lessons, so hopefully that'll start this week. we'll see how long each diversion lasts! If there was an Olympic sport for mediocrity in as many disciplines/sports/languages/subjects as possible, I would proudly bring home the Gold.

after uma left and the hospital gave me the green light, i flew down to st martin for 5 days. 9/28-10/3. i guess now it's been my sixth or so time on the island, but it never seemed so beautiful. there's something in my body that is crying out for nature, clean breezes, natural smells and sounds. my visit there was like medicine. sigh, just writing this makes me want to go back tomorrow. i used a non-digital camera, so today i get that old-fashioned fun feeling of picking up my photos! so, i'll post more soon.

unfortunately, that trip pretty much left me too exhausted to jump on another plane two days later and I missed one of my best friend's wedding. we tried to do some webcam thing so i could at least see it while it was happening but what bride should be fiddling with her laptop on her wedding day. anyway, i am so sad that i wasn't there, but I am so happy for them. Miss you Sandy-san!

the unexpected silver lining of the canceled trip to Madison was that I was home alone. Yeah, just that. I hadn't realized that I have not been alone for more than a stretch of hours since February. and you know what, it felt good. thankfully, i had some energy, so i just ate and slept and worked* whenever I felt like it. I went to a party and saw tons of familiar Fletcher faces and had a blast. I am so grateful for the Fletcher community, which has remembered me and treats me like one of their own. I just want to know who's hosting the next party and how long I can go on being, you know, "that guy" who doesn't actually go to your school but is at all the parties.

Ok, this is too long and it's too late. G'night!

Tuesday, September 26th, 2006

Hi, this is Uma (a friend of Erica’s from college) logging in for an inevitably long and windy update. I certainly won’t be as eloquent as Erica, but I do have her looking over my shoulder to watch my language.

On my first day being a 27 year old, I flew to Boston to see Erica. I arrived at 7am and went straight to bed. Erica didn’t mind as she was up to sleeping till noon that day as well. When we awoke our first item of business was to listen to some kick ass mix CD’s that Mr. Erik Patterson created with his blood, sweat and tears. The most memorable moment in this montage was seeing Erica writhing around in bed and rocking out to Journey’s “Don’t Stop Believing”.

That night Jaci, Erica and I had a true girls night watching two of the best shows on TV: The Office and Grey’s Anatomy. We all got a little misty eyed when Bailey collapsed near the end. You know the scene.

On the 22nd, we were all invited to their neighbors’, Amelia and Mike, for dinner. They were dog sitting and their dog clearly had a crush on Lola (Jaci’s dog). After a scrumptious dinner, Mike took the dogs for a walk and came back after two minutes, quite panicked. A skunk had sprayed both dogs!! The next two hours went by as Amelia, Mike and Jaci showered the dogs with hydrogen peroxide, baking soda and dish soap. Erica and I did the dishes and ate cookies. Needless to say, it was a great way to bond with the neighbors.

On the 23rd, lo and behold Jonathan Murray and Ted Sheets (also from the college days) arrived. Or at least we thought they did. They too arrived in the early AM but did not make contact until the early PM. When the boys FINALLY arrived we headed over to Erica’s friends’ (Gioia, Katie, and Evelyn) house for Afghanistan food (yummy in my tummy as Jonathan put it). After a thoroughly satisfying meal we settled into a game of Settlers. Yeah, you can probably guess what that means. A very complicated and therefore hard to learn game that had Jonathan rolling his eyes a lot and texting on his cell phone. Ironically, Ted and Gioia won, being the fully white team. Erica and I protested for our people (the darkies) but to no avail.

On the 24th we started our day with a lovely afternoon of arts and crafts. Erica painted a gorgeous depiction of Lola. Ted drew Lola in pencil and then quickly lost interest. Jonathan drew Ted who looked alarmingly like Adolph Hitler. He then proceeded to draw me, and I had grotesquely large breasts and looked like a relation of Beavis.

I then had the brilliant idea of going to Karaoke. Which was met with groans from everyone but my darling, Erica. We first went to another wonderful restaurant for Korean BBQ. You basically cook the meat on a grill at the table you are sitting at. The poor waitresses tried to cook for us but Erica quickly took over, eying the waitresses with suspicion anytime they tried to help.

Then we headed over to Karaoke and got ourselves a room with a strobe light, tambourines and books filled with lots and lots of oldies but goodies. We sang for 3 hours and Jaci, Jonathan and Ted sang the most. Yep that’s right. The groaners ended up Bogarting the microphone. Memorable tunes of the night were Ted singing Eddie Vedder, Ted and Jonathan singing from Phantom of The Opera, Erica and I jamming to Mmmmbop by Hanson and Jaci singing a beautiful Lisa Loeb song (JON!). The worst song of the night was all of us butchering Eminem.

On the 25th we decided to do a Boston day. We had covered Afghanistan, Korea, and Japan and we headed for somewhere more local….the Barking Crab. A lovely restaurant on the water where live lobsters (Jonathan ran away when we looked at them) and crabs are cooked for patrons to ravage. We got our bibs and went to town.

Ted named his lobster Uma (!) but like a true pansy refused to eat the head of her. Jaci and I had crab legs. She was smart and used her hand. I was not and used my teeth. Jonathan finished his lobster (who he named Bubbles – what is it with grown men and naming their lobsters??) but couldn’t bare to look at it after he was done. So he covered it with lemon pieces to show his respect. Erica topped us all and was the last woman standing as she ate from all of our plates and left no leg unturned. Our waitress said we did quite well for newbies.

The night was finished with a game of Balderdash (which I won!) and Taboo (which Erica and I won!).

And now on the 26th, it is noon. I sit with Erica as she eats her breakfast and we recall the last few days with giggles. I am sad that I have to leave this wonderful girl who is a like a sister to me but who I don’t see nearly enough.

- uma

p.s. Erica LOVES music and feels it is the best therapy for her. So, if you hear a great tune(s) send it our gal’s way because she will be sure to wiggle with glee.

Crotchety

"Careful, someone might say you're crotchety!", Jaci recently said in her hilarious sarcastic perfect way and we cracked up and I stopped my rant. Last night was the first Saturday night in a college town where if you're over thirty, you probably made a wrong turn somewhere or you need to move on or outward. From my open window I could hear laughter and parties in a 360 degree radius, to various volumes and wee hours. It makes me smile, honestly, because I remember scores of nights out with my girlfriends in college just like that. I live near a university (BU) and wouldn't expect or demand anything else, regardless of participation-- and I'm pretty sure I'm over it, sick or healthy. But on this occasion, I was cursing the stupid undergrads and their "gaity, jovialty, merriment" mostly to get a rise out of Jaci and my Mom, but also because I heard my own youth and naivete. My own assumption that everything was safe and ultiimately good. In its place, I now have apathy, or an acceptance that life is much more hard than soft. My former self would have called my current self weak, self-absorbed, and grossly pessimistic. Ha, my current self doesn't care what my former self thinks! Beautiful, yes?

It's certainly not just cancer, and a healable one at that. I should count my lucky stars that I am not in an Indian prison (read Shantaram, one the best books ever) or lacking in pleasant memories to relish and replay. And so, while I can extol my blessings and feel all the worse for their multitude in the face of my stubborn misery, I still never thought I'd be the "giving up" type. But I am. My dirtiest demons are dancing in my gut, whispering whispering whispering.

Ok, all you people that do believe in demons are freaking out right now, but don't. I'm just being dramatic.

So, guess I don't need to spell it out, but I have felt like CRAP for almost two weeks now. Take that word, CRAP, and spin it around, apply it, contort it; I mean it in every way. (You ungrateful pagan girl! You have everyone's love and support and your sister gave up everything for you and your Mom is there trying to make your room more hygienic and your boyfriend is willing to carry you so you can "hike" in st martin and kecia just had a party for you! what the hell?)

yes, all true. however, if I feel as I do this day or worse, as has been the case for too many inexplicable days, I plan to refuse chemo on wednesday whatever they say. not stop forever but i will not put more poison in me like this. this is not living. my mind and body are dying with all these pills and as i'm sure everyone agrees: death best is quick. torture under a fancy name and with big promises is not fooling me anymore.

hey, here's something juicy. in santa maria, behind our house on Blueridge Drive, I hear Unocal has been doing some overdue cleanup of Benzene. Benzene!! (google it- it's crazy carcinogenic in a world where we suppose cancer comes from magic). How Erin Brokovich is that? There's an 18-yr-old up the street who just got my exact form of leukemia (ALL) and rumors are swirling about other cases. I hope he's doing well and that he gets better. People with kids or who are younger need to fight. I dont know if he will ever really enjoy a carefree drunken college saturday night, but i hope so. i also hope for him to have the choice to have children. lastly, i hope that unocal buys him and his family a 20-million dollar ranch home with round-the-clock medical personnel in house, all the cars, boats, and other toys an 18-yr-old lusts after, and a perfect bone marrow donor so he can beat his disease long before he's legal to buy a beer.

one more complaint while i'm on my high horse and being crotchety-- i love that word! where does it come from?? gotta be the Brits. who's seen season 3 of Arrested Development, the best TV show ever?

Ahem, Please boycott, although if you haven't already bought it, you probablt won't, the book: The World is Flat by Thomas Friedman. I was a big Friedman fan in the past but he has turned into a typing mercenary sell-out and made millions from a simplistic, annoying, self-praising while tranparently self-effacing, six-grade-reader. His older stuff, history about the middle east told in a readable, detailed, balanced (i think, but what do i know) way is awesome. Pick up an old paperback of his From Beirut to Jerusalem or something and pls don't waste your money and time on this huge tome (i am listening to the audiobook and i have the hardcover- oops) that doesn't really tell you anythimg you didn't already know. Anyone else read this? Please share what you thought? i sort of feel like the insane hs history teacher that opines recklessly but cups his hand in his chin when the few students in the class who have done the reading offer opposing views. He gets a far away look in his eye and says, hmmm, yesss, that's very interesting Charles. Very interesting indeed. and maybe feels a little overly sheepish considering most of his flock are sleeping.

surprises

Erin popped in for breakfast last week, just in time for my usual bacony meal. What a joy to see her smiling face unexpectedly! I am so proud of her; she is officially a pilot now for Mesa Airlines and kicking some major butt. She has worked so hard and sacrificed so much for this; she is an inspiration.

Another not so happy surprise is my swiss-cheese brain. I mourned when I was informed that my central nervous nervous system radiation might cause slight brain damage, but really didn't notice anything of that sort until recently. My medical team says that it is caused by the chemo and that it should go away, but, as anyone who has ever blacked out before can atest, it is a distinctly disconcerting and frightening experience. There are periods of hours that are completely lost; things I've mailed off and have no recollection; movies that I can't guarantee if I've seen them recently or not. Although everyone around me is understanding (although somewhat startled), it is embarassing and scary.

As for other health issues, my counts are as my doctors expect- low enough to be fighting lingering leukemic cells, but high enough that I'm not in too much danger for pneumonia, blood clots, exhaustion, pancreatis, or other fun infections.

My spirits aren't too bad lately either; not sure to what I can atest that. Mostly the love of those around me- both strangers and friends/family. I am super happy that my Fletcher friends are back in Boston now too. Although it is saddening to watch them embark on their second semester while I languish behind academically/career-wise. However, I did stumble across a quote that might apply to me and how I am changing through this experience:

I am done with great things and big plans, great institutions and big success. I am for those tiny, invisible loving human forces that work from individual to individual, creeping through the crannies of the world like so many rootlets, or like the capillary oozing of water, which, if given time, will rend the hardest monuments of pride. -William James (1842-1910)

Right now, I'm in Atlanta enjoying a restful weekend with Luke and his parents. It is many degrees warmer here than in Boston, so I'm trying to soak up a few more rays of sun before summer officially vanishes.