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.

week 19, actually...

Well, I promised Erica I would blog on her behalf... so since I am sitting home with a little cold, I thought, no time like the present!

Many new developments here in Boston, so I will give a brief rundown of everything:

Erica and I attended Aaron and Shoshana Resnick's wedding in DC which was soooooo lovely. It was the first Jewish wedding for both of us and we're considering converting! Ok, we're not, but it was still great! The ceremony was in both English and Hebrew under a chuppah made by the bride's late-mother with singing, readings, and so much love. The reception was just FUN with circle dancing and great food... I think that seeing Aaron after so much time was a gift for Erica that was clearly displayed in her amazing level of energy that weekend.

Anyone a Red Sox fan?? Erica, David, Melissa, and Matt scored tickets to a BoSox /Yankees game! Poor BoSox... it turned out to be the longest 9-inning game in history and it was the Jimmy Fund Night where nearly $2 million was raised. Jimmy Fund is an amazing children's cancer center at Dana Faber... http://jimmyfund.com

Erica and I have recently joined a gym here which may surprise some of you. Since E has a bit of a difficult time walking up the stairs, one may think a gym is ridiculous. However, when you put her in a pool, she turns into a fish! I was so impressed with her stamina and strength! But no worries: when her counts are low or she feels tired, I don't let her push it. But for me, I'm enjoying her company there! We're still taking baby steps (with no rush) to lead her to workout on machines and build her muscles.

Luke has recently decided to move to Boston and has acquired a really great flat near Copley Square. Both our places are conveniently near T stops (Boston's metro system) which makes Erica excited for a little independence traveling between us. I'm looking forward to having a teammate here to help me when I need a little suport. As Switzerland, I'm hoping for the best!!!

As for me, I am taking a class starting September 18th and applying for fall 07 admissions to a variety of schools here in Boston. I'm looking forward to both meeting new people as well as welcoming back all the Fletcher friends for a new semester... NOT looking forward to the Boston winter though...!! :)

Pictures from Fenway and Aaron and Shoshannah's wedding in DC. More and a written blog coming soon....

a milestone passed

I am half way through the third phase of my treatment. The 30-weeks of hell one, you remember. The crazy part is that there are weeks or days when I have energy and hope and then equal parts when I am crippled and depressed. Well, whether or not it is really hell, I'm glad to say that 15 weeks have passed and I'm looking down the hill on the other side.
The past few days have been especially pleasant, as the weather here cools and my body and I played a trick on my doctors last Wednesday. You see, I made it so my blood counts were pretty low and awful so they couldn't shoot me up with chemo and steroids, BUT the numbers were only a smidgen below what the protocol allows for. In other words, I feel pretty good AND I only had to have the L-aspariganase (sp?) chemo this week. (Alright, the truth is I have no control over my counts whatsoever. Usually, in fact, I feel the exact opposite of what the test results show. I'll be happy and hyper and the nurses will rush in with a blood transfusion wondering how on earth I even walked myself in there. Sometimes I wonder about modern medicine, ya know?)

A lot of people have raised eyebrows at my severe reaction to certain drugs I am on (most likely 6-mercaptopurine), so they ran a test to see if I might have a gene mutation that makes me allergic. Apparently, since ALL is most often a children's disease, they run this test before treating any of those lucky kids. What a good idea! For adults, they wait until symptoms show. Anyway, I hereby declare that I am in fact a mutant. For now, my powers are latent but I'm sure that they will reveal themselves soon. Maybe telekinesis? Extreme speed? Spaghetti out of my fingertips? Who knows. But here's a free tip: now's the time to make amends if you have ever wronged me...

What else is up? Jaci and I have joined our local Brighton YMCA and go every day. (we joined two days ago and have gone twice- yeah!) I am so so so happy to discover that I can swim pretty much as well as ever and I love the refreshing healing feeling of the water. If it weren't for all the screaming children and the cavernous warehouse feeling of the indoor pool, I might even experience some kind of womb-like regression therapy. Does that exist? If it did, I would try it.

I tried reiki the other day. The wonderful woman at the hospital basically put her soothing but firm hands on my head, shoulders, stomach, and legs and used her energy to try and build my own healing energies and alleviate pain. We invited my Mom and sister to be in the room too and they closed their eyes and tried to send me visions and memories of when I was well and happy. I enjoyed the experience very much and hope to learn so much more about the incredible and undeniable mind-body connection.

As for the Murray Inn Registry: Jaci had some QT in Florida with her friend, Anita, Jamie has returned back to LA, Luke flew off to Berlin for the month, Mom spent a lovely weekend with us, Jaci bussed to NYC and fell in love with it, Jaci's back, Jaci and I plan to go to DC on the 19th so we can attend Aaron Resnick's wedding and see some sights. Will anyone who reads this be there that weekend? Lemme know.

That's all for now. Oh! Except my new favorite song is Easy Silence by the Dixie Chicks, who we saw from 4th row seats a few Saturdays ago.
Yeah, who's sick, who?