New Wednesday Afternoon Hot Spot!

Hey there, everybody! This is Erin Moneymaker, and I am pleased and honored to be the guest speaker for Erica's blog this week. Bear with me as this is my first blog attempt, and I am rather uncertain as to the protocol and etiquette of the cyber world.
I arrived in Boston on Monday, and was greeted by a rather chipper Erica who picked me up from the airport. She looks amazing, and it is so so good to see the sparkle in her eyes alive and well. Since then, we've filled our days with shopping, reading, napping and hammocking. Let me tell you from first hand experience that there is no better way to spend a summer afternoon in Boston than curled up on a large hammock with a good book, a great friend and a pitcherful of virgin peach sangria! Our spirits restored, we then headed off for to tour Harvard Square before we being "Potterized" by Jaci. (def: dragged to see the Order of the Phoenix, though I've never read any of the books or seen any of the movies and have no interest in wizardry whatsoever :). We've also spent two lovely evenings out with Jaci and Dr. Sirulnik, eating and drinking and enjoying time with a healthier Erica. Though I know her journey is far from over, it is so encouraging to see her light up a room again.
Quick update for those who I haven't met: I've known Erica since we were underclassmen at St. Joseph High School: since the day a popular sophomore took a chance on a brace-faced freshman from her JV volleyball team. The friendship was quickly cemented through bonding afternoons at Olive Garden (breadsticks and dipping sauce for the teenagers on a budget), double dating, movie marathons (Romy and Michelle's High School Reunion, anyone?), spirited debates conducted over bowls of Java Chip ice cream, and mutual support through the various trials and tribulations that high school presented. Against the odds, we kept in touch throughout college- meeting in Pasadena for shopping and beach time, or convening up north for Giants games and BART adventures (seriously, who designed that system!). We rang in the new millenium together in Mexico, ("please make that little man with the whistle and tequila go away!") Through travels, breakups, job hunts, deaths in the family, relocations and countless personal hardships, she was always there for me. I figured that would be as tough as things got. Then came the real world, and the really hard stuff. Like what she's going through now. I will never be able to wrap my head around how and why this happened to her. If there was ever a girl who lived life, it was this one, and so this seems to me to be the cruelest act possible. I could probably try to put a silver lining on this cloud, talk about how Erica will come out of this experience stronger and with a new zest for life, and I'm sure there is truth to that but the greater truth is that she didn't need leukemia to give her strength or perspective. Since the day I met her, she has had both in spades. I guess the bottom line is, though I have no idea why cancer chose Erica, I know that I have never been prouder to call her my friend than I am today. Watching her struggle with and overcome this disease on a daily basis with a bravery and grace I cannot imagine possessing makes my heart physically hurt with love and pride.
Today is Wednesday (hospital day), and as I write this, Erica is sleeping, awaiting her next chemo treatment. I feel lucky to be able to be here for this but it's hard to imagine she does this (usually) alone every single wednesday. It's comforting to demystify what is happening to her and it's impossible to watch her and Kecia (her awesome nurse-- pictured here) cut up without joining in. Anyone reading this who happens to find themselves with a free Wed. afternoon should definitely consider catching their show! And I'm sure Erica would really welcome the company!

speed limits

i love:

-frequent flier points

-my friend, Gioia

-week threes of chemo treatment

-learning languages

-countries where fruit is sold on every corner

-weddings

-driving a stick shift

-poolside reading

i don't love:

-multiple connections & flight delays that lead to nights spent in memphis

-bribing central american police officers

-sunburns

-having to curtail activities due to being neutropenic (lowered immune system)

and last week, all of those things were in my clutches as i decided to go on a last-minute trip to costa rica and meet up with a dozen of my friends from fletcher. diana stockwell (from costa rica) got married in san jose on 07/07/07 and we were all in attendance. i was originally planning to go, but then was dissuaded by concerned doctors and family that the jungles and mountains there are just too rich in potentially funky molds, germs, fungi; that TB exists in the villages, not to mention malaria and other stuff that would knock my heretofore excellent cancer recovery off its ass. So, I backed out.

but then, i woke up and realized that life can be lived within speed limits. i can be careful and smart about what i do and still be myself- aka- a spontaneous adventurous travelover. it's just not in my nature to wait until tomorrow to experience what you can today. some call that impatience and impetuousness, i opt for carpe diem. i joked with my mom that it was the hundredth time she'd tried to talk me out of it with the usual "Costa Rica will be there tomorrow" that finally made me snap. so with a few clicks and a few points from my credit card (capital one is truly no hassles!), i was on a southbound flight the next day.

it's so hard for me to be as careful as i should be. i sometimes feel like a rebellious teenager, feeling constrained and bitter about restrictions placed upon me, even when those limitations are set with only my best interests at heart. i think this difficulty is seeded in a blessing, however. because i am one of the very few participants in my particular ALL study who have not had to be re-hospitalized ever, i have really not experienced the dangerous ramifications of my noncompliance. from taking my pills to taking it easy, from avoiding gardening to sick people to crowds to the sun to raw foods, i have a hard time being a good girl. therefore, i am truly appreciative to my friends and fam who keep me in check and apologize that you have to. (blush)

on other fun news-- visitors!

leslie and crew have been visiting boston since thursday. here's us at the red sox game last night. yes, yes, i know- crowds. but who can deny the communal effervescence of fenway??

beyond red state blue state

http://typology.people-press.org/typology/

if you take this short survey, i'd love to know in which category you are placed. can you guess mine?

9 Showers Total

Check out the latest from Jim and Jesse- hiking from Mexico to Canada raising money for Dana Farber Cancer Institute (where I go) and for a leukemia foundation. They are my heroes, both for their altruism, their athleticm, and their dogged tenacity, mile after mile.

Can you add a dime per mile to their cause? A dollar? check it out at: http://www.marrowtrek.com/.

And here's their latest update from Wyoming:

Fundraising Overview

We have passed $10 in pledges per mile... That means we are now raising close to $300 per day for the Dana Farber Cancer Institute and he Cammy Lee Leukemia foundation! We hope to add a few more dollars to that total in the final two months of our hike.

Vitals

Miles hiked to date: 1500

Days since start: 61

Current location: Rawlins, Wyoming

Miles to go: 1500

Showers: 9

Hike Recap

We are halfway home! Yesterday afternoon we walked into the southern Wyoming oil town of Rawlins - 1500 miles from our start of the Mexican border and 1500 miles from Canada. We celebrated with an all you can eat pizza buffet, steaks, a double feature at the local movie theater and a night in some comfortable motel beds!

Much of the time since our last post from Lake City (southern Colorado) has been spent trapsing in and around the Colorado snow. Although we avoided snow storms like the one we experienced in the San Juans, we have used our snow shoes nearly every day between Pagosa and Steamboat Springs - a distance of about 550 miles. As beautiful as Colorado was, we were a bit relieved to finally trade in the high alpine landscapes for the arid sage brush lands of Southern Wyoming.

The new state greeted us with sunny skies and a good dose of Wyoming hospitatlity:
The first person we met on the "trail" in Wyoming -- a rancher out tracking down his cows -- pulled up and offered us two beers from the well stocked cooler in his pickup bed. We were hot and thirsty, and the first few gulps of the ice cold Bud tasted like heaven. The last sips didn't go down as easy, but they did help us get a few more miles down the trail.
The Infanger family (friends of Jim's dad) have graciously offered to drive over from Jackson Hole to meet us in South Pass City (they must not know how bad we smell!).

This afternoon, we hike out of Rawlins and into the Great Basin -- an area where the continental divide splits to create an enclosed basin. The Great Basin is known for being both arid and very warm -- daytime temperatures will hover in the 90's. So it is back to siphoning water from stock ponds and the occasional spring - much like our first miles in Southern New Mexico. But the trail is flat and wide, and we expect to cover the 120 miles to South Pass City in around four days. From there, we will head back to the cooler alpine confines of the Wind River Range (and enter our first Grizzly country!).

We hope this finds everyone well, and we look forward to detailing our Wyoming adventures in our next post (someplace in southern Montana!).

The highlights of our past four weeks:
Friends joining our hike - Rachel Tobey, Leland Fuhrig and Scooter (Jesse's dog) jumped on for a very adventurous hike (river crossing, dog throwing, bridge building, bushwhacking, log jumping and GPSing) around Steamboat Springs.
More Trail Angels - Matt, Michael and Tracy Brend met us in Grand Lake; Leland and his house-mate Ryan stepped up with accomodation and a bar-b-que in Steamboat Springs; and Lisa continued her altruistic service by driving up from Albuquerque for two nights of deluxe car camping.
Some pristine weather and the early signs of a late Spring highlighted the beauty which had eluded us for much of Colorado.
Signs of Spring, like fields of wildflowers and an abundance of newborn elk, deer and moose.

best laid plans

Sorry for the blag. (that’s a blog lag) Life has been busy but simple, a great combo.


There is an episode of The Simpsons where Lisa sets out to scientifically determine “Who is smarter: my brother or a hamster?” She sets up an experiment where the hamster is shocked each time it tries to eat a food morsel. Likewise, Bart receives an electronic shock whenever he reaches for a cupcake. The result? The hamster learns much quicker to avoid the temptation.

I fear that I am more like Bart. There are many facile lessons that seem to take me a long time to figure out. The pattern of which I’m finally taking notice is the effect on my body of the 3-week chemo routine of this 15-month phase of treatment. Only took me 6 months to take note and take action. Heretofore, the aches, the vomiting, the constipation, the insomnia, the fatigue, blah blah blah, were each examined rather individually and never have I had the (obvious in retrospect) prescience to notice of the schedules of sickness and plan ahead. The only thing I can say in my defense is that I really don’t think I’ve experienced a very consistent reaction to the drugs until the past couple months. So, now, I am, to some extent, preparing myself (mostly psychologically) for impending pain and discomfort. For example, tomorrow is Day 1 of a cycle, so I expect to feel like shit for about a week starting on Friday or Saturday— so, let me see… june 23-30… EEK! just in time for finals! Sigh. Maybe ignorance was bliss.

SAVE THE DATE

Monday is my 28th birthday, but I really don't want to do anything to celebrate. The main and honest reason is that I'm just too busy with schoolwork this month and literally need every spare hour to study. I am usually a strict adherent to a balanced lifestyle, but for this June, I am foregoing that sagacity and just buckling down. I am taking intensive Chinese (one year of Mandarin in six weeks), Media and International Conflict, and Contemporary Economic Issues. With six hours of in-class lecture per day, I barely have time to do the reading, listening, flashcarding, sleeping, and eating necessary. There is a light at the end of the tunnel, though: everything is done by June 29. This means that I have July and August to relax, take a trip to Cali, and devote some overdue time to creative writing.

There is another reason why I don't feel the desire at all to commemorate June 4th this year.

A lot of people around my age are getting engaged, married, having babies even. Me, I'm not lucky enough to claim any of those upcoming events. However, I have a different milestone coming up and I would seriously like you to SAVE THE DATE. At the end of March 2008, that's ten months from now (I suppose that's when people send out wedding Save the Date cards, right?), I will finish chemotherapy. As most of you know, the phase I'm in now is much more forgiving than the previous year's, but when I don't have to take cups of pills every day, visit the hospital every week, or feel weak and fatigued all the time won't really come until it's all over. Not to mention, upon the end of chemotherapy, that will mark two years since diagnosis, a nice hefty margin to put between me and cancer, with each day forward making relapse less likely.

Anyway, I figure birthdays are pretty commonplace, weddings/births and beginning LPC (life post-chemo) are not. At this point, I'm not sure what celebration will ensue, but since so many of my friends/family are strewn across this planet, I understand that some forethought and planning might have to go into your participation. A big party in San Francisco? A spa weekend in New Mexico? A long weekend camping in the sequoias? A vacation to Costa Rica/Tibet/Guam?

As far as the exact days I'm requesting of your life, if you're interested in this, consider the second half of May 08. Things should be nicely wrapped up with school and therapy. In fact, I'm sort-of considering that next May's commencement exercises to be my graduation because I'm hoping to go to Shanghai-based China-Europe International Business School (CEIBS) for my last semester and it will mark my final presence at Fletcher. I won't be able to walk, but I hope that I symbolically "graduate" from grad school with my friends then. I guess that adds one more reason to celebrate.

Bring. It. On.

amnesiac

i need to apologize.

on an average of once per day, i am greeted by someone's big friendly smile, someone who clearly knows who i am, and who i just can't quite place. some of them have "heard" of me as that girl who dropped out of school last year or something, but most are people who i have actually met. some people are bad with names, but i seem to have serious mental blockage- not just with names but with having met people at all. i feel rude and idiotic each time i shove out my hand with an introductory, "hi! i'm erica!" and they reply, "yeah i know, we met at that party last friday?"

oops.

i know that many of my meds have "interesting" cognitive and emotional side effects including forgetting things, but since most of my mental functioning is back since going off of aspariginase and down on some other chemos, i am surprised by the persistence of the swiss cheese holes in my cranium. i hope i'm being fair and honest blaming my rudeness on my drugs and this isn't just a weakness that i will own for eternity. anyway, if you have been the victim of such a slight by me, please accept my apology!

today, we celebrated memorial day with a backyard bbq at my new casa. it seems that boston does not really believe in spring or fall, but prefers only the extremes of winter and summer. even so, i'm glad that we've entered the hot part of the year. thank you so much to those who came today!

best phone call

On Sunday evening, Uma CALLED me! She was somewhat able to leave me a voicemail. Needless to say, this marks incredible improvement and although the therapy process is slow, it seems to be steady. Here is the latest update from John:

I’ve said recently that my relationship to Uma’s recovery is like watching a snail cross the street and I’m on my hands and knees with my face right downthere near the pavement - just concentrating on the snail and hoping that the doctors have really told us to cross the right street and that a car doesn’t come by and squash us both. Other people come by every so often and remark about how amazing it is that the snail has moved to far to the other side of the street. I look up from the pavement and see just how far and am amazed. But it takes other people’s perspective to help me see what has happened.

Today, like most days, Uma and I walked about a mile in our neighborhood. As of yesterday I began working with her on straightening her right leg at just the right moment in her stride. (Have you ever thought, in minute detail, about what you do when you walk?) It’s easier to access the leg-straightening detail when she walks up our stairs. She plants her right foot on the step, leans forward and pushes up. Before she plants her left foot she must straighten her right leg -essentially standing on one leg for a moment. We did this yesterday after the walk. Today we did it before the walk and so on the walk I would slow us down and bend over while we walked and gently push her right leg back at the right moment - straightening it and causing the foot to roll more naturally. I do this about 20 times. She gets it while I’m helping but not after I stop helping. But the way this recovery goes is just like that.....she gets it with help and she needs ever-so-slightly less help each day. It is enough for gratitude that she gets it with help.

...and then I begin to chant along with her stride, "Monday, Tuesday, Wednesday, Thursday.....” etc. And she chants, in time, with me. She does well in and so I mix it up by telling her to alternate with me. I say, “Monday”, she says, "Tuesday” etc. It cycles around to where we each say each day every other time. (7 days - 2 people). She almost always gets stuck on Wednesday - she jumps from Tuesday to Thursday all the time. So then we just say, "Monday, Tuesday, Wednesday” over and over and then start all over again. She gets better at it every day.

same thing in practicing her writing the alphabet. Singing the alphabet song helps her find the pronunciation for a difficult letter. The first time we did it she would have to begin at the start of the song each time. Now we just back up a few letters before.

Today was the first time she took a shower by herself. I helped her with strategy but she did all the work. She absolutely loved it. She seemed to feel so much better standing up and moving around instead of sitting on the shower chair and having me move the nozzle around and wash her hair etc. for her. She kept saying, “wow!” and smiling. Then there were more strategies for drying.....her back and feet present the most problems but she did it. .....but how to get lotion on her left hand and arm? it’s the only arm that works......I had her put some lotion on her left leg and then rub the back of her left hand and arm on her leg. Big smile. ......so....things like that happen each day.

Tonight Uma helped me cook dinner - stirring the chicken/onion/garlic/pepper whatchmacallit and putting produce back in the frig. We ate. She did the dishes. Yesterday I did a gig and had two friends by turns come by and watch her. They, in effect, are her emergency phone call, if necessary, but the visits end up being so much more than that. In the morning I prepared meals for her that could be microwaved and before I left for the job we walked and did speech and upper body therapy. The days can be so full in this way. My focus is her. Her focus is her.

Two nights ago she went out to dinner with Erik while I went to play a show at a theatre we’ve both performed at several times. I had to go early to set up and sound check and she and Erik came by at showtime. The place was packed and a lot of her friends were there. This kind of event is so mixed for her. It is truly wonderful for her to see all of those beatiful friends and have them so openly and warmly express their love for her. But because she can’t converse with them except to nod or laugh or say, “I’m fine.” is really frustrating for her and she ends up being emotionally overwhelmed. So....as soon as the show is over we sneak out and go home. She’s happy and sad. We’ll take the happy and accept the sad and accept every expression of love offered. For all the people who were at that show and spoke to Uma, thank you so much and please understand where she “is” right now. Take no offense that we left early or that she didn’t say much. She loves you. As of now she walks better than before. Her right arm and hand are still, for all intents, non-functioning but she says that it feels different. The exercises we are doing each day that our home-based physical therapist (a professor at USC) taught us cause Uma’s right tricep and shoulder to stabilize and engage. Uma really feels it in her arm. When she first did this with the PT I saw the therapist’s face light up and avery big smile appeared on her face. .....Uma has trouble with speech, reading, writing, etc. but I have hope. Each day she repeatedly copies the alphabet it gets better. The progress seems glacial when I’ve forgotten that her brain was so severly insulted. When I reflect on her condition the first month after the aneurysm I’m very content with her progress.

Yesterday we were walking home and she stopped and uttered an, “Ah!” while gesturing at the sky, the trees, the sun. We did some charades and guessing and I discovered that she was feeling good about her life despite the injuries. I remarked at how great it isthat we don’t live in a part of the country where it snows or is otherwise cold - imagine having to bundle up and wear boots etc. just to talk a walk - along with a brace and arm sling etc. Sometimes we feel very lucky.

She is on the computer each day looking at emails and her myspace page. She really enjoys this so please send her a note if you can.nithipal@hotmail.com or myspace.com/umanithipalan. If you want to see a really nice picture of her go to myspace.com/johnballinger This is a new life of patience and love. Please think of her mind, her arm, her hand and feel love. Think of yourself and feel love, too, and accept my love and thanks for doing this and for all the previous prayers.I am so grateful.

John

Lordy Lourdes!

Being Catholic is like being a country music fan. You can go away from it for fifteen years and when you go to mass or turn on the radio, they're still playing all the same stuff.

My pilgrimage to Lourdes, France, last week was fascinating in many ways and predictable in many others. One of the most interesting parts was learning about the group that made it possible for my Mom and me to do this, the Order of Malta. The order started in Palestine in the middle ages and took care of the pilgrims who came to Jerusalem. Later, they were called upon for military service and were driven from the holy lands to the island of Rhodes, to the island of Malta, to years of exile, and then finally to Rome. It actually has its own government now, an independent magistracy, bilateral diplomatic relations with 96 countries and is granted the status of Permanent Observer in many international organisations, such as the United Nations. Their members have a tradition of being from royal or chivalrous families in Europe but now the knights and dames (that's what the members are called) are supposedly from all walks of life. [In reality, in the U.S. association that I was with, it seems that lineage may not matter as much, but money doesn't hurt.] Today, the Order does some really great stuff, the least of which is probably bringing all of us malades to Lourdes. They have a special commitment to the poor and to the sick, so they do extensive humanitarian work with the elderly, the disabled, people with AIDS, and especially in disaster situations around the world. I have to say that it was a trip seeing everyone dressed in their Malta regalia all week, like this lady here.

Over the course of the week, I met many wonderful people, both members of the Order and other malades and their companions. As everyone does, each had a unique story of how they came to be a part of the trip and what hopes they harbored for traveling all that way. I met a 4-year-old (who just stole the show) whose family brought him to pray that his tumor never comes back. I met two sweet students studying in Florence who were a refreshing dose of youth and perspective. I met a priest who agreed with me that the Church should be much more open to gays. I met a bishop who worries a great deal about his retirement and likes single malt scotch. I met a man whose mother received water from Lourdes and lived 13 more years after leukemia (back when leukemia was like a death sentence). I met a woman whose every breath is now dedicated to her wheelchair-bound husband who had a stroke two years ago. And on and on and on...

What I actually did there was attend many masses (one with 30,000 people!) and other special services. My feet were actually washed and kissed by priests and I was dunked in frigid holy water by burly Italian women who made me kiss a lipsticked-headed mary statuette-- the bathes were NOT the most spiritual experience. In traveling from the hotel to each of these activities, I was pulled and pushed in a blue cart, along with all of the other malades. This allows the sick person to fully experience the domain and allows the Order to fulfill their duty to serve the sick. At first I thought I'd prefer to walk, but then I got used to the whole service bit and wouldn't mind a permanent cart and puller here in Boston, if anyone is interested. When I move next week, I'll only be one mile from school. tempted, aren't you?

Although I'm not sure that Mary and I got to commune as much as the pilgrimage intends, my bio mama and I spent a precious week together. It's sort of amazing how my family, on my Mom's side, have been Catholic for generations. Apparently my Mom's grandmother was already a Catholic; I'm pretty sure that the missionaries jumped straight off the boats in China and hit my family first. Anyway, my Mom was was super patient and cool about all my questions and commentary on the trip, while still being the steadfast believer and devoted Catholic she always is.

If Mary is to be found in each of our mothers, then I did get to take a holy journey.

miracles

Miracles

I was in a cab this morning to Logan Airport and my loquacious driver queried my plans to the point where I found myself explaining to this perfect stranger that I was going to France to get my cancer cured.

And, to my shock, it appears that is indeed what I am doing.

Life’s pace, daily priorities, distractions distractions—and I just haven’t given this journey its due psychological, spiritual, or emotional prep. Funny how in speaking plainly to a taxi driver I finally heard where I was going.

To the uninitiated, here are the embarrassingly skeletal details I currently know of the legend of Lourdes. Once upon a time, Prometheus stole some fire and Joseph Smith found some magic rocks and there was a pre-adolescent named Bernadette. Mary, the mother of Jesus, appeared to her telling her to build a church at the site of her appearance. After overcoming much disbelief from her community and local priests, Bernadette succeeded in having that church built in honor of Mary. From that day forward, mysterious waters without a known source have flowed. Today, this town in the Pyrennes is an important pilgrimage for believers, particularly for the sick. You see, there have apparently been thousands of unexplained healings in Lourdes over the years and malades journey from all over to bathe in the sacred waters.

Shortly after my diagnosis, an acquaintance of my Mom’s insisted that we plan to go to Lourdes. This friend’s daughter had also been afflicted with acute lymphocytic leukemia, about fifteen years ago. Prospects were not good for her recovery and I’m assuming desperation brought the two women to Bernadette’s mysterious healing font. Anyway, Charlotte and her daughter (who is now in her thirties, married, with kids of her own!) now pilgrimage to Lourdes every year and will be with us in France later this week.

A Catholic organization called the Order of Malta funds malades and a companion to go on planned trips to Lourdes and so it was, with a “nothing to lose” shrug, that I applied many months ago to go on this May’s pilgrimage. Perhaps because of this lengthy timeline and the casual way I submitted an application, I have not digested this impending experience.

Also, there’s probably that little problem about not buying the story. As much as I’d love to possess the gentle comfort of religion, the compass of organized morality, it just doesn’t stick. My only real faith is in skepticism and I am only truly devout to the gods of questioning and being a pain in the ass to religious people. Arguably, twelve years of Catholic schooling will make anyone a pagan.

There may be a confluence of energies in Lourdes, a repository of so many prayers and hopes that there actually is magic there. And if so, do you have to subscribe to the Church dogma to get your share? I want to be open to whatever this opportunity affords. I seek to be absorbent to goodness and beauty and health. Et les baguettes et le fromage et le francais. Il y a longtemps depuis j’habitais a Paris! And spending loads of quality time with my mama.

Alas, so here I go to France, where Mary will see straight through my heart and know that I can’t pass GO, cannot collect a miracle. She’ll know that I don’t think the most effective way to help her children here on earth is to have some random girl in the mountains build a building. She’ll know that I find it unfair that there should be healing waters in one place—let’s fix all the dirty water sources in which people wash and drink every day all over the world.

Can I get an amen?

and none the wiser

unbelievable. i don't mean to toot my own horn, but i can handle some tough shit. right now, i feel that fun "just got thrown into a sack and punched repeatedly" feeling where all my muscles hurt, even ones you don't realize you have like on the sides of your cheeks, the front of your neck, and under your armpits. it's one of my favorite chemo joys, referred to and explained away as "coming off your steroids". this sucks, but it pales with what i'm about to tell you.

i actually have something different to complain about, something more sinister and long-lasting. something that crept up on me and has assaulted my sense of who i am and where i am in this lifetime.

i just found the whitest of white hair on my head.

now, your first thought is probably- damn, the girl should be grateful she HAS hair on her head at this point. and, yes, you are surely right. but i have to admit i feel a bit jarred by this discovery. looking back, i think i noticed a gray-ish strand a few months ago. a few flicks of my mascara wand, however...

now, this mother that i just saw while brushing mes dents was thick and mean. it said, come near me with that black eyelash crap and i'll make you rue the day! so, i must respect it. perhaps if i don't pluck, if i don't dye, if i just gently caress it and even, heck, love it a little, it won't... you know... multiply.

the pain, the fatigue, the despair- cancer sucks. but finding your first gray hair, now that's trauma.

Ever wanted to read Jaci's diary?

Tomorrow is wear marroon and orange day nationwide.

Per my request, particularly because I think she has an intersting comparison btw Bush's quick reaction to international conflict but not to domestic disaster, Jaci's letting us read her journal from yesterday. Interestingly, today, at work, she had to phone two area superintendents for suggestions on how to update her school's lock down policy.

"Wednesday, April 18, 2007 Boston, MA

I find myself glued to the news... 2 days ago, a student on the Virginia Tech campus killed 33 people, including himself. He bought two hand guns and ammo and had a massacre in class... my heart aches for everyone, including the gunman, and my mind can't find reason for this. i just can't process why, how, WHY a boy thinks this is an option... apparantly, he was referred to counseling, to the police. how did he slip through the cracks? aren't these organizations set up to protect kids before he gets to this place? i know i should be angry with him for killing 32 people (students & teachers) but maybe because he killed himself too, it is just too tragic to point fingers. the anger he felt went unaddressed...

as a counselor, will i be able to help a child like him or am i even strong enough? would i feel guilt and remorse if i couldn't reach him? at what point does a person take responsibility for their own life and say, "yea, i've had a shitty life. unfair things have happened and no one protected me." then shouldn't one move on and heal? was this his healing method? oh the parents... the families of the dead grieve. the families of the survivors are so thankful. and the rest of us are only shocked.

i really don't understand. our nation grasps for answers to make sense of such a tragedy and President G.W. Bush only scolds anyone for asking. he says we need to heal first but we need solutions now. he should take as swift movement in our own nation as he did in the Middle East. after 9/11 we were a nation empowered by his leadershipto unite... why does it happen for a foreign enemy and not a domestic one? gun laws are lax. repubs on the news say, "if other students were armed maybe more lives would be saved." are they stupid?? the solution to gun violence is more guns? in the hands of kids only18-years-old... a firefight in the lunchroom... God help us. what other species is blessed with a conscience and soul? and it is our very being to kill ourselves. why?

i am working at the newton montessori school for kids 3 months to12-years-old. what would i do if a child brought in a weapon? who would believe kids are capable of such things...?

Norris Hall

the despicable murders yesterday at Virginia Tech seem to have left our whole country in a deep state of shock and grief. i feel devastated and angry. the fury I feel is directed at Cho, but i am also appalled at reports that some in the international media are shrugging their shoulders and simply cluck-clucking their simple admonition- oh it's just america and her violent gun culture at it again. well fuck that- kids DIED yesterday. analysis is good and necessary and I'll be the last to defend the 2nd amendment, but have a little respect. and a little perspective- four years ago, eighteen people died in a school shooting in Germany (a country with strict gun control laws) and in 1996, a deranged gunman killed 16 children, a teacher and himself in Scotland. this is not america's problem; it's a human trend and a human tragedy. i am so sorry to all of the families of the victims.

not only is the connection ripened by the Schmitt's connection to the school (our close family friends, jon anita nic bonnie ric, whose two sons went there, one of them as the Hokie football team's star kicker last year), i'm sure oxy folk haven't missed the frequent reference to Norris Hall, where the majority of the murders took place. this VT academic building shares a name with a building where many of us lived for part of our time at Occidental. just that little coincidence is enough to drive this massacre home with even more strength. when you hear "norris hall", how can we not imagine a crazed gunman systematically moving from norris yellow to norris blue to norris green to norris orange; how can I not consider myself blessed to still have as lifelong friends the people i lived with there- uma, anna, bess, jamie, marie, jonathan, mike, ted. what grace to have never had such devastation to bear.

Two Requests

#1. See the movie Iron Jawed Angels. It's inspirational! And, if you watch it while thinking of those held in Guantanamo prisons without charges TODAY, it's galvanizing.

#2. Do you live in the Boston area? Are you free this Wednesday afternoon? Are you able to handle a big needle going into your friend's spine? If you answered yes to all of these questions, have I got a job for you! Ok, in all seriousness, I am wondering if anyone would like to come with me to the hospital this week. Jaci's new job precludes her ability to come to this spinal tap/lumbar puncture. I know, I sound like a big baby and I can definitely do this by myself, but a hand to hold and someone to distract me would be an immense help!

Recipe for Galiano

Recipe for Galiano Island

1. Start with a small lush hunk of land in the Gulf Islands west of Vancouver, British Columbia.

2. Toss in a small population of natives who have fished and hunted there for generations.

3 Add a dash or two of hippies, artists, builders, retirees, and gay people. Do not pre-wash.

4. Season well with ample amounts of cannabis.

5. As the community marinates, throw in ample populations of birds (I like to use bald eagles), whales, frogs, butterflies, and sockeye salmon.

6. The trick is not to overworry the dough. Things are so beautiful and natural in this recipe, complaining and envy sort-of separate out of the mixture like oil and water.

7. Sprinkle generously with rainwater, put it in the oven at about 65 degrees Fahrenheit and presto. You’ll have a Galiano Island for you and your family to enjoy!


I just came back from a short visit to my sister, Linda’s, house in Canada.

The view from her and Derrick's house.

Linda and her beloved pup, Sara.

The golf course that we had all to ourselves one afternoon. Well, almost all to ourselves.

In a totally odd coincidence, I found out while in Canada that some friends of mine from Sascatchewan (that I taught with in Japan) were taking an impromptu roadtrip to Boston. So, I definitely got my dose of canadian chicks who rule recently. Great seeing you, Michelle!

the iRack

http://www.glumbert.com/media/irack

DE - DENIAL

In recent weeks, I think I’ve entered into a new and rather scary corner of the dark woods of Cancerdom. It’s like the Thieves' Forest of the Princess Bride. Here, instead of Rodents of Unusual Size, I have Anxiety of Relapse of Unusual Size. Instead of quicksand, I have colds (like the one I’ve enjoyed this week) where you sink into a 103 fever and a hacking cough before you know it. When you’re traveling through the deep woods of Cancerdom, the Fire Swamp’s methane bursts are the little aches and pains that explode into extreme fears and assumptions- a headache, a stressful week, a sore back, a runny nose—what is god’s name could it be besides pneumonia??

Don’t get me wrong, most of the time I’m the cucumber’s envy. So cool, in fact, that some confuse my defense mechanisms for strength or courage. (suckers!) And I think that’s why things are hitting me differently lately- I’ve borne a young person’s classic immortality complex, more or less. Denial is not something you “get over” all at once, in my opinion. It cushions your way throughout a process, buffering here, backing off there. Facing the trauma of how much chemotherapy sucks was one major de-denialing for me. Now, I think I’m facing another: I really could die from this stupid disease.

Ahhh, so that’s what all the fuss was about. This is serious business. My eyes fill up with tears as I type because I’m finally (I think) really FEELING this, really getting pressed down under the weight of what’s happened and what could happen. On one hand, I am embarrassed to discuss this because you might wonder how the hell it could be “hitting me” now. Of course, it’s “hit me” many times before, staining my awareness and outlook in various ways over the last fourteen months, but I have definitely noticed something heavier entering my consciousness lately, almost a respect, a respect which causes a chest-heaving sadness to well up, a tidal wave of powerful acknowledgement.

Why now? I have no idea. I finally realized that I should ask my doc what were my chances. You know, a common patient complaint I’ve read about is the insensitivity of oncologists doling out death sentence statistics. [Uma had quite the stoic doc in NYC who’d parcel out his grim predictions as if offering any compassion would mar his ability to function as an ICU neurologist. Perhaps it would.] Anyway, my med team has been just the opposite. So as not to frighten me, a "gays in the military policy" has been employed: don’t ask, don’t tell. So, it was only when my uncle Bobby asked me a month ago what the doctors were saying about my post-treatment recurrence likelihood that I realized I had no idea.

40% chance of relapse.

Yup, 60% chance of no more cancer. 40% chance of having to go through it all and MORE. If I got it again, apparently, I’d definitely get a bone marrow transplant. There is still no match for me, so they’d use umbilical cord blood, attempting to match as closely as possible to avoid all that fun rejection host-versus-graft disease stuff. 40%.

Look at me, obsessing over a statistic, just like I know not to. I promised Dr. Sirulnik that I understood that statistics were just rough guidelines, that I am younger and healthier than many of the patients that drag those statistics down, that I mathematically comprehend the concept of a median average. But shit- 40%.

Around a week later, Artineh called me crying. A nine-year-old boy she knows who had ALL too, of whom we had chatted over lunch in L.A. a week previous, had just died. His leukemia had been in remission but when he relapsed, his poor little body just couldn’t take it the second time around. Sweet Art was calling to tell me to take care of myself and in gratitude that I’m doing so much better. I felt confidant and strong as I assured her that I was fine and was going to stay fine, that my heart goes out to this child and his family, but she has nothing to worry about with me—look at me, I did hot yoga the other day! But, you know, it’s never fun to hear about the ones who don’t make it and people with ALL seem to be everywhere you turn- when you’re looking.

Then, this week’s Newsweek cover story highlights one reporter’s struggle with cancer. The giant Lance Armstrong bracelet on the glossy shell filled me with scorn- who is this journalist and why in the world does Newsweek think his story or perspective can represent the trillions of cancer experiences and perspectives out there? Then I read it and immediately soaked the damn mag in tears at just how common the experience is. I had to find a pen to start underlining because I found so many of his words mirror my own struggles and my own journey. The article is covered in red underlining, stars, and circles:

“A friend compares his semiannual scans to visiting a parole officer. When the scans are clean, it’s worth another six months of freedom, though with no guarantee of extra time for good behavior.”

“American culture rewards cheerful stoicism, a quality that cancer patients usually display in public but find difficult to sustain in private… I… retreated into a fog of unshakable misery.”

“an excruciating bone-marrow biopsy, which felt as if I were on a medieval rack.”

“Many patients place full trust in their physician and never second-guess them. I was constitutionally incapable of that, so I hit him with a barrage of questions. Why this chemo protocol and not another used by a different hospital?... why couldn’t he tell me more?”

“But a little knowledge can be a dangerous and depressing thing.”

“My sister set up an account… Instead of having to repeat my story endlessly on the phone or in individual e-mails, I could offer periodic updates, then watch in amazement and gratitude as the good wishes, parodies and embarrassing stories about me from fourth grade rolled in. The site kept practically everyone in my universe informed while easing their sense of helplessness- and mine..”

“I can’t even conceive how people without close family… friends and co-workers can survive the ordeal.”

“The experience changes your relationship with friends, as some who were once mere acquaintances step up magnificently and other who were closer fade away.”

“Others just wanted to know whether I had ‘beaten’ it so they could check me off as one less person to worry about. Even now, it’s just inaccurate to say that I have.”

APRIL FOOLS YA'LL

Sorry to be so cruel and thank you to all who anxiously called yesterday. The only part of my previous post that was true was the four-month "oops" on the bc shot. Congrats to the few of you who remembered the date, but to the rest of you-- APRIL FOOLS! There are no tiny Murrays on the way just yet.

**be careful what you wish for**

There's no easy way to say this.

I'm pregnant.

Apparently, my medical team and I forgot to check the Lupron (birth control shot that controls ovulation) schedule and basically it was administered over one month late. This is not that unusual apparently for someone my age, however it forecasts some difficulties with my ongoing cancer treatment.

This is an awkward forum to announce such a serious situation, but I do not have the energy or presence of mind to call the many of you whom I want to know. I'll write more asap.

cooing over small things

3/25/07
blog
cooing over small things

Bugga. I almost got a $600 travel voucher, but they ended up not needing to bump any passengers. So, now I am on board a 747 bound for Boston, smelling the guy next to me’s very sour feet. Five hours breathing through my mouth. GROSS.

As Bess said: planes, trains, and automobiles. After a reunion with one of my best friends from childhood, Ambur Rozok, in San Luis Obispo, I took a bus up to San Jose. Funny how almost everyone I mentioned that to exclaimed their derision for travel by bus. It actually was wonderful; no need to impose on anyone, four hour total, and $28. Can’t beat it. In Mountainview, Bess and I sat at a lovely sidewalk restaurant enjoying cocktails and tapas. How lucky am I to have such a wonderful cousin/friend? Later we picked up Miss Marley (pictured in Bess' side view mirror) and went over to visit Bruiser, Betty, Woody ( pictured, lined up at the front door, chez Wang) and Robert, Jill, Gary, and Ben. The beauty of the rolling hills with the slanted sun and her Midas touch left me with my mouth agape out the window like one of those puppy dogs. I really cannot decide which part of California that I visited this week was the prettiest. That’s lucky for me so that when I’m job-hunting after grad school, I have several super job markets to explore.

Mom and I had a full schedule of family visits. Our family is especially fertile these days – I got to see Sean Takeshi Kwok, 5 months (pictured), Jonas Chu Roodman, 4 months, Ethan & Talia Giannini, 5 and 3 years old, and the bulging tummy of six-month-pregnant Kena Fowler. It was a bit weird hanging out at the “kids’ table” at the Giannini’s BBQ because we’re all in our 20s and 30s and John Giannini was giving Joseph Fowler lots of soon-to-be-a-dad advice. He couldn’t fathom that we didn’t know what a “Pack and Play” was (it’s apparently an ill-named portable crib). One interesting thing he passed on to him (and to me, inadvertently) was “the only worthwhile thing [he] learned at pointless lamaze class”: the teacher chalked a circle on the board and described it as a symbol of a life lived to an average age. Then the teacher drew in a tiny pizza slice and announced that that amounted to the amount of time you really have with your kids, when they want to learn from you, when they need your love and attention. Such a small period of time in one’s lifetime. The message was to treasure that time, even when they cry at 2:00 am or when they’re cranky or rebelling. He said that parenthood is harder than you can imagine; it changes your life more than you can imagine; and however wonderful you think it will be- it’s greater. Sigh. I can’t wait. I’d have never thought of myself as one who oohs and aahs over small humans, but I can’t help it. Internal clocks, cultural time lines, increased exposure- I don’t care the reasons; I just can’t wait. =)

(Here are two pictures of two other cuties en mi vida: Ethan, 2, Andres' son; and Alaina, 1, Jamie's niece.)

So, I just made a list of all the folks I got to see on this trip. To "make" the list I couldn't have just met them this week. Anyway, I got to see SIXTY-EIGHT people who I haven't seen in anywhere from a few months to many years.

A thought to end this family & friends week and if anyone knows from whom I ripped this off, I’ll give you a nickel:

“What is a family? Is it just a genetic chain, parents and offspring, people like me? Or is it a social construct, an economic unit, optimal for child rearing and divisions of labor? Or is it something else entirely: a store of shared memories, say? An ambit of love? A reach across the void?”

(That's a pic of my 'gna-boo' (grandma) and me. We are cheers-ing our Ensure drinks.)

on the scale

something heavy and something light:

1. http://www.boston.com/news/education/higher/articles/2007/03/25/genocide_games/

2. True story:
Bono was playing a U2 concert in Glasgow recently, when he asked the audience for total quiet.Then in the silence, he started to slowly clap his hands, once every few seconds.
Holding the audience in total silence, he said into the microphone, "Every time I clap my hands, a child in Africa dies."
A Glaswegian voice rang out from near the front of the crowd, piercing the silence........
"Well, fuckin' stop doing it then!"

Vote against spousal neglect

Elizabeth Edwards made me cry yesterday. Her breast cancer has returned, spread to a rib and possibly to her hip. She refuses to let her legacy be as a roadblock to “this great man becoming President” and supports her husband’s campaign 100%. She talks about continuing to live her life and even compared her illness to diabetes- something that you can never cure but that you can live with. She said that we’re all going to die; she just happens to know what she will die from. Her strength amazes me because it cannot be confused for a state of denial or for political ambition. She’s had plenty of time to understand what cancer means since this isn’t her first bout with the disease and I have to believe that most people, when faced with life and death, could not prioritize power over health and loved ones. The Edwards for Pres website elegantly included this news but generally steered clear of taking advantage of voters’ sympathy; it remains professional. (It's really impressive how candidates are harnessing the web this time around.) I am a fickle Democrat it seems, since I originally bought Hillary stickers, then I fell in love with Barack, and today I flirted with John. However, despite Elizabeth's amazing shows of strength and the fact that my heart goes out to her and her family, someone is gonna get screwed if Edwards were elected- either the family or the US of A. Thinking about how much damn work I was for Jaci and others when I was under extreme chemo and radiation, Elizabeth’s hubby should not have to choose between meeting with the king of Jordan or making his wife’s treatment appointment or whether to work on universal health care or comfort his children as they deal with their mother’s illness. I admire both of their spirits to fight and find Edwards to be a fine candidate, but I sure hope he doesn’t win.

I love Cali in the Springtime

March 20, 2007

Day six of my California Adventure© finds me in Grover Beach at Leslie’s new casa. She bought her castle two short weeks ago and although I had my concerns about her buying property and committing herself to all that entails, I have to say that it seems she made a fabulous decision. Her house is a three-bedroom, newly renovated, stylishly detailed domicile with fruit trees, a terracotta patio, and room for her dog Sarge to roam out back. It seems like an awesome investment and she seems so happy here. Her roommates, Nicole and Erika, are a lot of fun too (ever played Nintendo Wii?!) .

But let me rewind. Past L.A. and all the way back to Boston. I got a job. Well, it’s technically an internship, but since it’s paid, I’ll call it real employment. I am working for the Unitarian Universalist Service Committee on a campaign they launched in January called DRUMBEAT FOR DARFUR. Instead of whining and complaining about the genocide in Sudan or making ya’ll sign my petitions, etc, I feel like I’m using my extra time to do something. Besides bugging politicians and informing people, one of the main tactics of our campaign is “divestment”. This is the concept of pulling money away from countries and companies that invest in Sudan and effectively prop up a government that arms the perpetrators of staggering violence and displacement. One of the headline companies that we’re encouraging people to divest from is Fidelity (who invest heavily in PetroChina, an oil company that is deeply entrenched in Sudan). If you want to learn more about these things and what you can do, check out http://www.sudandivestment.org/home.asp and www.uusc.org/drumbeatfordarfur.

So, yeah, I work 10.5 hours per week at DRUMBEAT and, so far, find my experience there very fulfilling- both for the cause and for me to be productive. Coincidentally, Jaci and I both had our first days of work a couple weeks ago. However, she’s decided to look for greener pastures and paychecks. For those of you to whom I have not yet boasted, Jackson has heard from all of the grad schools to which she applied and has decided to attend Columbia University’s School of Social Work in New York City in the fall.

Before Spring Break, Fletcher held its annual “Faculty Waits on You Dinner”, where our esteemed profs don aprons, refill our water glasses, and schlep plates to and from the kitchen. It was special to me because last year’s event’s auction’s proceeds went to the Leukemia and Lymphoma Society in my honor. Jaci attended but I was still in the hospital. It was amazing to be there with fresh tufts of hair and strength in my limbs one year hence. So many elements of Fletcher have been so supportive over this past year, so I took the opportunity to thank the dinner’s attendees.

Midterms have come and gone; I think I overstressed when I didn’t really need to. My International Trade and Finance exam went really well and my research paper was in on time, though I certainly cannot say I would submit it to any Global Health journals. Does anyone consult graduate school GPAs when all is said and done? Why do I worry; is it even possible to fail a class?

Anyway, after flying back to California, my friend Peter and I went and had what he alleged and I then condoned are “the best pancakes in the world.” Then we went and saw Uma, who was sitting up in a wheelchair! Of course, John was there and Erik arrived not too long after. I have to say, and I just told John this, that the way he writes his updates makes my heart flutter and my stomach clench- he is such a captivating and amazing writer. And, more important than that, I cannot express how joyful I am at the milestones he so artfully describes (like how she kissed him yesterday) and how knowing that Uma has him honestly makes me feel like there is a divine force of GOOD in the world.

Later we met Jamie and Michelle- finally I’ve met the famous Michelle- for Caribbean food in Santa Monica. The next day I spent at Michelle’s finishing up my paper for school and then stopped by the Alumni House at Occidental. Barb had made a banner saying “Welcome Back ERICA” almost causing me to burst into tears at arrival. So sweet. I realized that it has been almost two years since I’d been in L.A. flashing around my engagement ring and my big plans for a Caribbean life… sigh. Life is so funny, isn’t it.

Jamie and I took roost at the Ritz Carlton in Pasadena; the girl has got to be the sweetest most generous person I have ever known. She gets a wicked discount at that hotel but still would not accept a penny from me to contribute.

The commitment ceremony between Eddie and Jason was beautiful in every way. We gathered on Branca Patio at Oxy and just let the tears of happiness and emotion pour down our cheeks. The vows that they had written couldn’t have been sweeter; Jason promising to love and cherish Eddie in this life and beyond en espanol and Eddie thanking Jason for all that he is and joking that “everyone should have a Jason—just not his”. Then we all dined and danced the night away. I realized that I have only been to a handful of weddings in my life (Adrian & Megan, Robby & Emi, Kevin & Elena, Bess & Ben, Uma & Erik) and they have ALL been incredibly fun and touching. I look forward to this chapter of life that supposedly will be ripe with nuptials.

Speaking of weddings! Today is Wednesday- Anna’s wedding day. Yes, you read that correctly. She is getting hitched at the courthouse to the lucky Robert, her boyfriend she met at kung fu and is completely head over heels for. They hope to have a “real wedding” in the future, but have decided to get married immediately before some rules for non-citizens marrying citizens get tighter. Love you sweetie and wish I could be there. Mazal tov!

So that’s about it for now. I went to my first yoga class (since struck by cancer) this morning and need to leave this coffee shop and head back to Leslie’s for a shower. By the way, this was the first trip I’ve taken out of a wheelchair in a year as well. Thank you, Dr. Sirulnik and Adriana, for making it possible for me to take my Wednesday intravenous chemo in pill form instead of going into a hospital out here (although I have to take twenty-three pills today!). I am really enjoying the natural beauty of California on this trip and have to say that I cannot wait to move back to this state after grad school and treatment are over. I did not go with a biased attitude to Boston but have decided, through reason and experience, that it doesn’t even hold a candle to San Fran, L.A., or San Diego. In a life where things seem so unclear and my future relatively uncertain, it feels great to have a sense of “home” here in Cali and a place where I can really nestle in with my friends and family for a lifetime.

(this last pic is just a random roadside vista in San Luis Obispo. i made Ambur stop so i could take pictures.)

Jaci's LAUNCH

hi all----it's jaci. it's been a long time since i've authored ablog, but this one is actually a thank you and a request.

First, thank you for all the congratulations for my acceptances and I have decided to attend Columbia University in the fall for my Masterin Social Work!! I'm thrilled!!!! I'm sad to leave Boston becauseit'll be hard to be away from loved ones, but excited for a new challenge and experience. Besides, I'll be a short 4-hour train rideaway-----Erica won't even know I left! It'll be a little harder toconvince A... :)

So here's my quick request: a friend of ours, Ted Sheets, has finally launched a website that has been the fruit of his time and energy for the last year or so called: LaunchZilla - www.launchzilla.com. Thisis a hybrid of MySpace and YouTube with a socially conscious twist.Basically, I'm asking people to check it out and sign up. The more people who check it out, the more successful it will be and come on,it'll make Ted happy! It has entertaining videos, audio, and pics aswell as lots of great features like ZillaDating and Cash Contests!So, please just go and look at it!

and of course, can we all give a phatty shout out to UMA who is making progress daily!!! YOU ROCK, GIRL!! they say everything happens for areason and i'm still trying to understand the reason for so many ofthe health injustices in just this year alone, but i must admit that i'm happy Erica is in a place where she is well enough now to be therefor Uma in a way that Uma was here for Erica... i think you reallyfind out who has the ability to step up in times of crisis and $40,000says Uma is an amazing friend and deserving of all of it! Let's keep donating and furthering her progress. Seriously, save $5 a week bymaking your own coffee in the morning and give it to Uma at the end ofthe month?? Easy-peasy.

Ok, enough... gotta go study Spanish homework now! Yes yes, i'm heading to Buenos Aires in a few weeks!!!!!!!!!here's wishing everyone well and lots of love. xoxo

Just Uma Pictures

Uma, as she looked yesterday at County USC Hospital, after her re-shunt procedure

Uma, on the plane that took her from New York to Los Angeles

The team's backbone: John and Erik
(don't forget you can always get detailed updates on Uma at Erik's blog: www.myyearofnewthings.blogspot.com)

Uma, in her new room, Thursday

Marie visiting Uma

MUST work

When you have problems, isn’t it nice to be able to assign blame? Not only external blame, although that’s the more fun variety, but even to know what part of yourself is causing your woes? I’ve felt a bit lost this week, ambling around with a shade over my eyes, unsure what’s causing me malaise. There are some things I recognize, the sore muscles from dexamethozone, the watery puffy eyes from six-mercaptopurin, the fatigue from the methotrexate. But, my friends at school might say: "I have all those things and I’m not on chemo."

Good point. It’s midterm time and my inner nerd is rebelling. Procrastination is the despot of my psyche!

I have so much I want to blog about... intellectual ticklishness, the new jobby job, tomorrow's trip to the orange groves of So Cal, Uma's Amazing Race, nearing nuptuals... Plus- I want to share a picture of my new mess of hair! if you'd like to imagine it, it reminds me of Adam Sandler's hair.
ah, but I MUST go back to working on a paper. Half way done.

TBC...

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?