Sunday, December 24, 2006
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.
Tuesday, December 19, 2006
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.
Sunday, December 03, 2006
"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..."
"...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.
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. :)"
Saturday, November 18, 2006
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…
Monday, November 13, 2006
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 firstname.lastname@example.org.
Nov. 3, 2006
here is the map. Raintree is right behind our house. our backyards are tangent.
Tuesday, October 31, 2006
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.
Thursday, October 26, 2006
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.
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.
Wednesday, October 18, 2006
"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.
Monday, October 09, 2006
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 26, 2006
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.
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.
Monday, September 18, 2006
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.
Sunday, September 10, 2006
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.
Wednesday, August 30, 2006
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...!! :)
Sunday, August 27, 2006
Sunday, August 13, 2006
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?
Thursday, August 10, 2006
Monday, August 07, 2006
Ode to a New England Vacation
(Or But Why)
But why? When the water’s warm
Just a few degrees latitude south
Sure the Council on Aging doesn’t
Appreciate one’s 20’s and 30’s
But that doesn’t mean we can’t put
At least one good nightclub on the
Gulf side of Florida.
And when you go to the lake in
Maine, I say, But why?
You pretend like it’s fun
To splash and bump to ski and fall
Into glaciers and ice burgs
Competing with caribou and grizzlies
For frozen trout. But why?
Who wants to be a minimalist
But the nautical décor in every summer cottage
From Arcadia to Newport makes me
Want to go into the shell drying business.
Lucrative, yes. But why?
Over the Appalachians and over those Rockies
There’s another place, but it’s a secret.
The lake water there is welcoming and clean
Even your puppy will learn to swim I swear!
The oceans are warm and you can get
A tattoo, a bodypiercing, AND authentic Italian food
A few blocks away with the sea still in your ears. Ahhh.
I wonder why anyone would vacation away from the
Alta y baja costas del California.
What is a vacation anyway and should we go every week?
To the Cape, to the Vineyard, to Rockport?
I like Boston but from my air-conditioned aloneness,
Jaci begs me the question, but why?
Monday, July 17, 2006
I am totally digressing here but one more comment about body before I get to the point I was leading to with the weather. Ladies: my emaciation doesn't look that bad from the waist up, but my legs are grossly sticklike and skinny; maybe picture a 90-year-old man?... and STILL, when I flex my butt, (I say again) STILL, I have cellulite. So, don't freak out about a little cottage cheese; all the rice cakes and celery is not gonna chase those dimples away! Now you know.
Ahem. So, the reason for the todo about tanktops is that tomorrow I go in for a surgery that will implant a port into my chest. It will have two places for needles and IVs to go, so I can receive blood while I get chemo, get blood drawn while I get fluids, etc. It's everything a girl on the go could want. But I'm not a girl on the go. And I don't want a strange plastic thing sitting in my chest for a couple years, and I don't want to go under general anathesia tomorrow morning, and I don't want to see a tube protruding as it snakes over my collar bone, and I don't want to have a visible bump that looks like an alien third breast, and I don't want to wear boyish t-shirts and preppy polo button-ups every day, and I don't want two scars on my neck and chest forever.
Whew, so thanks for letting me get that off my chest. They say I'll "love the port", and I know it's unavoidable and not that big of deal in the grand scope of things. My veins are getting too scarred and stubborn for arm transfusions and I've got a long way to go. I'm not sure why I'm freaking out so much about this, really. As several people have pointed out, I've already been through much scarier obstacles. Who knows why the human mind can take a beating sometimes and not others? Perhaps pain and fear and feeling like a freak weighs cumulatively and I've hit my limit? I've gotten used to the looks, maybe even proud, for my bald head, but if I have a gross-looking lump on my body too? [Remember that awesome part in My Big Fat Greek Wedding when the greek Mom(?) talks about the growth on her neck? and her "bibopsi"? and how they found teeth and, yes, it was her twin?? Seriously, that scene/joke actually just might get me through this.]
On a much happier, even joyful, note, my older half-sister Linda has been visiting us for the past 10 days. Linda, Jaci, and me fell in into a giggly, honest, comfortable rhythm the moment she arrived. We all haven't seen each other in a decade, but after ten days, I feel like we've been best friends all along. She is an extraordinary cook. She puts ALL the wanna-be "Top Chef"s to shame. Seriously. So, we've been spoiled by her culinary prowess and just her gentle, compassionate, funny presence. It's so amazing to feel our connection and love; our Dad's blood certainly runs through all of our veins and his personality is aptly present our likenesses. She departs tomorrow, but, as I told her, there is honestly NOTHING I can say for certain about what I'm going to do after all this over, except that I will definitely go visit her on Galiano Island as soon as I can.
I should also mention that we've had another on-again off-again visitor. Luke has been a great help to Jaci and Linda, while being a sweet and fun companion for me. He's leaving for Atlanta on Wednesday and I'm not sure if he plans to come back anytime soon, but I hope he does. I will leave it at that, as I don't really like to write about my ex-fiance much in this blog, mostly because it's too personal (you're thinking- butt cellulite is too personal!) and also because our status seems more mercurial than ANY online publication could keep up with, and this languid blog doesn't even try.
One final thing, I have to add an addendum to the list of things that Lola and I have in common. You see, Lola is a very social loving puppy and when we leave her at home alone, she welcomes us back with various shredded items littered throughout the living room. Most of the time, it's kleenex or other junk, but she's ruined several pairs of shoes, a beautiful bracelet Jaci beaded herself, sunglasses, etc- not to mention all the food she's consumed that she shouldn't have. So, Linda offered Jaci a suggestion and it really seems to work. When Linda was telling her husband on the phone about their success with keeping Lola busy and happy during human absences, these are the words I overheard:
"They've been trying all kinds of solutions but i really think that the bone marrow is the cure."
well, i thought that was pretty funny, since a donor match for me and a cow femur segment for Lola are essentially the same remedy for our most pressing needs.
Friday, June 23, 2006
Anyway, query one:
Imagine that you're me and you've got about two years of "hard" ahead. No sugar-coating, chemo is difficult, saddening, painful; it sucks sucks sucks. However, there are the nebulous but likely silver linings: new appreciations, new clarities, new friends. So, what if doctors could put you in a coma for the duration of your treatment? You would sleep peacefully until March 2008 and wake up, weak but cancer and chemo free. Would you take the coma or the experience? (Not that I'm offered any such option, but it was something Evelyn and I were discussing the other day and I am curious what other people honestly would do.)
Remember back to when you were nine-years-old. You were probably in the 2nd or 3rd grade. Can you remember what you did for your ninth birthday or what you wanted for presents? I probably wanted some specific game or something for my bike or markers or something. Imagine a nine-year-old boy who, of his own idea and volition, asked his parents if he could request of his friends not to bring him presents to his birthday party, but to instead give a small donation to his "friend" who has leukemia. He composed a little letter explaining his wish and enclosed it with his colorful party invitations. And, after all his guests had left his pool party, when asked what his favorite part of the day had been, he said that it had been knowing that he helped someone else. I was/am still in such awe and admiration for Robert, Bess' little brother, and these actions he surprised me with a few weeks ago. I just wonder if even my current consideration of others could hold a candle; I know I wasn't that selfless at nine. Thought you might like to hear that story and ponder too.
Thank you Robert and all your good-hearted friends!!
Wednesday, June 14, 2006
So, I'm sitting up and blogging. This says a lot already so I'll try not to be too redundant. I started to feel stronger Sunday evening and Monday's steroids must be adding to the higher energy levels. I am so pleased to be more clear-headed and strong and hope it lasts for a while.
One thing we haven't mentioned but I'd like to share quickly is that Jaci has been taking Mandarin Chinese classes for six weeks! She always comes back in that good mood of one who has exercised their brain in an avenue that is clearly stimulating, relevant, and chosen. I am simply proud of her, using this time wisely, and practicing a skill that we plan to drop like a bomb on the Shanghai bargaining markets when I'm well enough to travel again.
Another thing we have done a bit of is origami. Thank you, Nate, for the suggestion. As it turns out, my good friends, Sandy and Marc, are marrying in October and desire 1001 origami cranes to decorate and bring good luck to their nuptials. They sent me paper and Jaci taught me how to fold and now... ahem, M & S... we are in need of more papers!
Have you ever heard of The Journey or Journeywork? It's sort of a scripted guided meditation take-off from Deeprak Chopra's ideas of cellular healing. In other words, it is the belief that all physical healing has a spiritual component and that you must harness and remember this aspect of your body if you really want to heal completely. I am drawn to the theories and agree that healing is a holistic process (as well as getting sick) and have found myself reading a lot of philosophical, natural remedy, and religious books of late.
Anyway, a few interesting occurrences... When my dear friend, Anna, was visiting a few weekends ago, she generously gave both Jaci and I the best massages we'd each ever had. She is a professional massage therapist as well as an informed and strong believer in some of the ideas I mentioned in the previous paragraph. My sister has had a cramp in her right calf, particularly painful when she attempted to flex her foot, for almost a year. She warned Anna not to do much there because it always hurts, no matter how gentle or careful the pressure. When Anna got there, she did a bit of mini-Journeywork with a very skeptical Jaci. She told Jaci that she had some emotional memory stuck in the muscles there and asked her to just acknowledge this and to consciously "let it go". Although, as I said, Jaci thought it sounded pretty strange, she did her best to "talk to her calf" in her mind and cannot explain how, but she enjoyed Anna's shiatsu long deep strokes into her normally hyper-sensitive leg. And now, to this day, her pain is completely gone.
Crazy, isn't it? If you're still interested in this stuff, one more thing. Anna, for my birthday, got me a Journey Session, meaning a counseling meeting with someone who has been to all of these conferences and guided scores of people through some pretty intense emotional levels to clear out some of the emotional memory junk that causes illness and/or prevents complete healing. This session was finally organized for yesterday and I was so thrilled that Jaci's calf experience spurred her to call my counselor and request a session too. It certainly is not just for someone with cancer or some other grave illness; it's for anyone who wants to heal or grow or explore themselves. I won't speak for Jaci's experience, but I found my 2.5 hour meditation to be very positive, something I'd never tried or experienced before, and instructive. To me, it just makes sense as a complementary medicine: to experience fully your emotions, to release negative sentiments and past blame (including the big one: self-forgiveness), and to just recognize the love that is at the core of yourself and those around you. Anyway, that, in a very small nutshell, is some of what Tuesday's session brought up for me. Thank you, Anna, and everyone who has sent me interesting, educational, and entertaining reading and material during this time of questions and way-too-much time on my hands.
I seriously thought this was going to be a short blog. Sorry for causing a trip to the optometrist to augment your contacts' prescription. You know, lasik is getting more and more affordable...
Two more things. First, the next batch of those yellow bracelets came in and we mailed all of them off today. If you haven't yet e-mailed Jaci your address or the amount you want though, we're waiting on that info! And, of course, if you want more, just let us know.
Secondly, and finally, explaining the blog title. Was it suspenseful having to wait until the end or just annoying?
I have found that our dog, Lola, and I have way too much in common to be simple coincidence. I have made a quick list of why I am now sure that we are not merely just in love but are actual kindred spirits:
1. We're nearly always hungry and thirsty, but we don't really like dry foods.
2. We're easily distracted by games and even more enamored with visitors.
3. We love the outdoors and exercise but mostly just stare longingly out our condo's windows.
4. We both have forearm markings from our IVs.
5. We both are waiting for our hair to grow back. (#4 & 5 are because of Lola's May 2nd spaying.)
6. We both adore Jaci, need her for many basic necessitities, and bug her all day long to give us more attention.
7. We both bathe infrequently.
8. Our sleeping postures are often remarkably quite similar, sprawling and uneven.
9. I think we both whine a lot, although I can't confirm for the same reasons.
10. We will both sit, shake, and roll over for bacon.
Sunday, June 11, 2006
Since Erica is having yet another sour week, I'll try to recap the past week or so events...
Beginning with her birthday BBQ! Anna and I perfected the barbeque menu when Artineh and her family came to visit the previous week and we broke in our new Weber. Jonathan grilled and everyone else lended a hand here and there.. She had a wonderful time---lots of laughs, smiles, drinks and games. Thanks to everyone who came!!
As for her hospital visit last Monday, she once again was unable to receive the chemo treatments since her counts were so low. Instead of being worried, the doctors all feel that this is "completely normal" (something we hear a lot and wonder exactly how that's possible since she isn't following protocol?? and if it's normal, why is there a protocol?) and simply means that the chemo given two weeks prior was so aggressive and worked so well that it is still fighting the leukemia---and subsequently all her other cells too. They said that the next time they are able to give her chemo, it will be a lower dosage. Ultimately, they will give her the most her body can handle in an effort to completely rid her of the disease. It makes sense, but we have to wonder, is she really handling the meds??
Since Erica is having a rollercoaster ride of side effects ranging from an insatiable appetite to being hungry but not having anything sound good, from diarrhea to constipation, from pain to lack of feeling in her limbs, from having chills to breaking out in sweats, dealing with energy levels... etc etc, we have begun to complain to her doctors. Ready for their suggestion?? Marinol, a.k.a. MaryJane! Granted it is pill form, but they have resorted to the good old weed! And Jamie and I have never laughed so much in our lives! Erica is HILARIOUS on this stuff!! She is so cute and funny and finally hungry! Unfortunately, she doesn't want to feel high all day as it lasted for a ridiculous eight hours so she stopped taking it after day 2. As much as Jamie and I were tempted to join her in Wonderland, we opted to remain responsible and do our best to keep her from tripping out more than necessary. She may try it again, but since her reality is already a drug-induced daze, she prefers to be as coherent as she can.
Hmm, what else...? Our days are pretty standard, minimal activities lately because she hasn't been able to get out of bed. Tomorrow is another hospital day, and if her counts are up for it, she will receive the chemo and steroids which may give her a bit of a boost. All in all, we giggle a lot, play many games, and read out loud daily. We are finally making it through our list of books that we have always meant to read but haven't had the time. Yea, we have lots to bitch about, but I think we're pretty lucky too.
Thursday, June 01, 2006
The last week has been rather chill. Erica's energy level has been extremely low which limits our daily activities. Anna came to visit last weekend and joined the tradition of cooking a specialty for us! We primarily stayed in, watched movies, and ate. Well, I ate. Erica has put me on her eating regimen of consuming every few hours only to leave me hanging since she no longer has an appetite! We play the game of 'what sounds good?' to be met by the newly popular answer of 'nothing'. It frustrates her to be hungry and have nothing taste good or moreover, upset her stomach. I have managed to keep breakfast a decent constant for her with an overwhelming supply of bacon, sausage, and eggs. Her weight is on a steady decline weighing in at a whopping 94lbs. last hospital visit! However, looking at her body, she maintains the appearance of many models--seriously. Big boobs, small everything else. We recently saw photos of Nicole Richie online who seemed to resemble Erica, but she intentionally looks emaciated. (by intentionally, I mean, she doesn't have cancer... as far as the public knows.) We've come to decide that our bodies naturally rest at a weight that's comfortable for it, allowing us to function at our best. For some, this weight may seem bigger than society deems appropriate, but our new understanding begs the question: who would know better the healthy state of your body than your body? She eagerly awaits the day that she can look in the mirror and say again, "I'm happy with my weight."
Sunday is Erica's 27th birthday and we are having a little BBQ to celebrate! We tend to make plans for each day, but stipulate that we may not actually make the date set if Erica lacks the energy. For the most part, we don't keep our plans. This technique is bitter-sweet as it gives her something to look forward to, but causes her to feel disappointment if we cancel. She has tried to push herself to keep appointments only to lay on the nearest couch or chair wishing she didn't leave the comfort of her bed. So, with this said, we hope that the concept of a BBQ will be the best option: at home, very casual, and a relaxed environment.
I think it may be worth while to explain Erica's treatment plan (briefly, don't worry!) so as to give you an idea of what we're up against. She is currently in the third phase of a four phase treatment plan/protocol. This third phase lasts for thirty weeks. In this, there are ten 3-week cycles that repeat identically. The first week consists of the most drug exposure, tapering off in the second week, and the third week has only one medication. Ideally, she would feel progressively better but not so. She has roughly 1 1/2 weeks of 'not so good' followed by 1 1/2 weeks of 'better'. She is currently in the 7th week of the 30 week phase and desperately wants it to be over. The title of this period is called 'Intensification' for a good reason.... The fourth phase, Maintenance, continues until the two-year mark of her going into remission: March 9, 2008. More on the fourth phase when we reach that point....
During this week's regular visit to the hospital, her counts were too low to do all of the week 1 chemo, so they just did one of the three chemo treatments. In addition, because of low hermatocrit levels, they gave her two blood infusions, which should have made her feel more energized. Unfortunately, that theory hasn't panned out; in fact, she crashed in her bed when we got home from the hospital and refused to rise until mid-afternoon the next day. We think this unexpected and prolonged fatigue and weakness is related to some kind of bug in her intestine making her constantly uncomfortable and making calorie absorbsion clearly unattainable. Sorry for all the bad news, but we were expecting a little respite from the torrent of afflictions last week and this week, and are sort of pissed off that the maladies morph but don't let up. We are still giggling and trying to make the best of things though and Erica is definitely looking forward to her visitors this coming weekend.
Lastly, the Erica Courage bracelets have been ordered!! Sorry for the delay---I admit to dropping the ball on this one. However, they are ordered & will arrive in about a week and a half... If anyone would like one or more, please email me at email@example.com and specify (1) how many bracelets in either youth or adult sizes; (2) your address where I should mail them; and (3) to keep funds easiest, just send the $5 to Erica's PayPal account found at http://supporterica.blogspot.com . Questions? >>email me. :)
[in the photo, we are at Jamaica Pond where Lola got to swim for the first time EVER and that is the famous Kent! he is a wonderful friend here in Boston who never leaves us wanting for companionship or Duncan Donuts.]
Monday, May 22, 2006
So, Lance took one look at me and proposed on the spot. Since then, we've eloped, my hair and his testicle have grown back, and we're honeymooning in Biarritz. If anyone needs to reach us.
Sigh. Actually, no, I'm sorry to say, that's not how it went, but it was extremely cool to meet Mr LiveStrong himself and to hear him speak at the Tufts University graduation. Special thanks to Marcin for pulling whatever strings he did to get us tickets to the brunch with Lance. He is incredibly down to earth, passionate about what he does, and is solidly cuter in person.
I've been musing a lot about appearances lately because I don't recognize myself in the mirror anymore. It's the strangest sensation. I haven't been this pale since the womb, I can count the number of tenacious eyelashes on each eye, and I have this new spattering of big dark freckles courtesy of the radiation treatment. Add in the scrawniness and baldness and you start to believe me.
Last weekend, in addition to the Fletcher graduation, I had the privilege of attending a Lobster and Clam Bake party- very New England and very fun for those not from these parts- and of course, everyone's got their digital cameras flashing. With the instant satisfaction of checking out your pictures, came, for me, the shock every time of what I look like. I guess people around me are used to my ghastliness but every time I see a snapshot or pass a mirror, I am surprised anew. I'm not really complaining; par for the course I suppose and everything will come back to normal someday they say. People have it way worse than me. The interesting part is just that, how many people's faces really change look and dimension within their lifetime (besides aging and besides that woman in France who just had that face transplant)? How many people get to experience looking completely different for a while? Brushing my teeth and staring into a stranger's face is just one more thing my brain definitely still hasn't quite processed.
Thursday, May 18, 2006
Maybe some other LA folks (who don't know about it) would either like to come down and participate or make a donation. (see link above) Love to you both.Ums
Where: Newport Harbor High School
600 Irvine Ave
Newport Beach, CA 92663
When: May 20th @ 10am - May 21st @ 10am (that's right...24 hours)
Wednesday, May 17, 2006
Thank you to the many people who have said they will donate!
Click on this to get started,
On the map, click on your state to find a center near you. Seriously, click on the link. Do it. Do it now.
One other update: unfortunately, since Erica is still not feeling well enough to travel, she won't be going to Pasadena for the Oxy reunion... but believe me that she wishes she could and encourages others to still go & send many pictures! Once we handle a few day trips around New England, we'll give cross-country vacations a try... :)
Sunday, May 14, 2006
Since Erica is going through Week II, a week we dread, I am going to blog tonight... In Week I, she is on steroids in conjunction with many different chemotherapies. So, now she is no longer on those steroids that gave her a false security of a confident 'high' where her body was finally behaving a bit more than normal. Basically, she is plagued with muscle pain in her legs, chest pain as though something heavy is pressing down on her, hot flashes, and now sore mouth and throat to boot... She has told me a couple of times while looking at herself who now barely breaks 100 lbs. on a good day, "this is not my body." perhaps she's right---but everyone who has been in contact with her knows that it is still her spirit. Strong and willful. She has suckered me into doing yoga and tai chi with/for her since she cannot. And anyone who's been in contact with me knows that is an absurd picture!
So I chose to use this blog as a forum for answering some reoccurring questions; please forgive me the nonpersonal response. If there are more questions, let me know and I'll keep you posted as best I can...
1. Is Erica doing anything to help with the depressed feelings mentioned in the previous blog post?
Yes! I have to say that she is open-minded to every suggestion thrown her way. First, through Dana Farber, she has been receiving acupuncture twice a week. It is pretty amazing to watch and even more amazing to see her perk up afterward. I'm not sure if it is a coincidence or if it's proof that 3,000 years of Chinese medicine is legit! I believe the latter and therefore I am eager to see if the next few weeks of acupuncture will help relieve the nausea, lack of energy, and mood---as it claims in studies to do. I wonder if I can take a picture of the needles in her without destroying her qi... hmmm, it's pretty cool to see!
Here are some other mood busters she has tried: reading, me reading to her, books on tape, movies (although we are trying to lean away from the TV but having newly subscribed to Netflix makes that tough), prayer & spiritual avenues, FRIENDS, crossword puzzles (we still have yet to jump on the Sudoku bandwagon...), The Economist, eating foods that are high in anti-oxidents, sucking on ginger, theorizing a way to get to California, opening care packages and letters, etc etc... Many people suggested art as an outlet which is a great idea, but difficult for her right now since she has little sensation in her fingertips thereby making it hard to write, draw, or paint. But I will say that she is receptive to all ideas and is willing to try anything to make her feel at all better...
2. Any word on her bone marrow donor situation?
Kind of... our mom is on a quest to have as many people who are of Chinese/English/Scotish decent tested. She is utilizing connections in China, London, and all across the states to have drives set up for people to get tested. It is easier than I originally believed: oral swabs. No needles at all to get tested!! I'm going to lay it on thick, ready? Someone in this world, by the law of probability, matches my sister. But this person has yet to be tested... I am asking YOU to go with whoever you can take with you to get tested. True, you may not match Erica, but you may match another person who needs something from you that you will never miss. It is beyond simple and it saves lives. I don't know how to simplify it more----take an afternoon off work & go. Better yet, recruit your coworkers to go with you! I know there are people that check this blog daily and I love that---but have you been tested yet? For all the people who are asking what they can do to make her feel better, get tested! She was THRILLED to find that Leslie, Kellie, and Jenny Edwards were not only getting tested themselves, but bringing friends with them! It is so important...
So if you haven't deduced yet, Erica does not have a match. This means that she will continue with the two year protcol plan. If a match should be made within this time, the pros and cons will be weighed based on how good a match it is... For now, they are still searching.
3. What does she want for her birthday?
Please reference answer for question 2.
4. Is she really going to LA for Oxy's reunion?
We are going to talk to the doctors tomorrow to make sure it is okay to fly first and foremost. Then we will look into flights and monitor her energy levels... Currently going upstairs is a chore, so LA may be a stretch. But the idea of seeing all her friends is quite motivating!! Plus I could really use some sun---this Massachusetts rain is never ending!
5. How do I get an 'Erica Courage' bracelet?
They will be reordered since Katie and Gioia SOLD OUT! :) We never would have thought it would be so successful... it's so neat! I have heard people tell me it is a great way to (a) talk about Erica, and (b) educate people on the prevelence of leukemia. something about birds and a stone...?
Well, here's the skinny: Erica is fighting hard and some days it's more uphill than others. But we hear it gets easier... for now, keep the kind words and humor flowing freely and know that we HEAR all your posts, and even those that don't post. It was really awesome to see new people posting these last couple of weeks. (hi clif) I never knew I could feel so much appreciation and be so humbled daily.
Good luck FLETCHER kids on your amazing summers away and abroad! We will certainly miss your daily visits and eagerly await your returns with many photos. Thank you, Anita & Josh, for visiting and I can't wait to see you guys soon!! jamie...where are you?? it's been a week and you haven't returned!! we are confused... ;)
Wednesday, May 10, 2006
Yesterday was Day 1 again, meaning loads of chemo and other chemo-side-effect-alleviating drugs too. I know medicine has come miles and miles in its treatment of leukemia and that just years ago I probably wouldn't have survived, but I bet someday, future peoples will look back and marvel that we actually made patients endure chemo-therapy torture. It's so crazy and difficult for someone who more-or-less did "everything right"- excercise, healthy food, etc- to inject enormous amounts of poison into her body on purpose. There will be other ways.
I was pretty terrified because I felt awful during week 1 last cycle. Thankfully, I believe I can attribute that misery mostly to the residual side efffects of the radiation. I actually had a nice weekend and despite the long day at the hospital (my hermatocrit levels were very low so I had to spend considerable time receiving bags of red blood cells), had a good day yesterday too. I have been enjoying considerable time with Fletcher friends since most of them are off to their summer travels and travails very soon and am so grateful that I have the energy to do that.
Unfortunately, I have decided not to do a summer school class at Fletcher. I have been debating it for a while, but have to recognize that I am just not ready for the intense reading, the 3-hour classes, the stress, etc. It's hard to admit, but I fear that starting and failing would be a hundred times more disappointing. Jaci's taking a Mandarin class for her own personal growth, so I'm considering taking maybe painting or something. There is also a Tai Chi center not too far which I'm sure my body and mind could benefit from. This disease is sure making me have to slow down in life, in rushing toward a career and that sort of happiness I thought was all-important. It's a tough mental transition, but in desperately searching for meaning in this disaster, it's probably a good lesson. (not totally convinced)
On Monday, my doc reluctantly gave me the OK on eating sushi (only this week when my levels are all good and boosted, he conceded) since he doesn't want me to get any funky germs from uncooked foods. I am so excited and Jaci and I plan to hit up some sashimi today. Almost four months without sushi?? Now, THAT's tough.
One other thing- to my Oxy friends: who's planning on going to the reunion? I received all the paraphenalia yesterday and really want to come, but of course don't want to make the trip if you guys aren't going. Let's do it! (maybe not stay in Stewie, but...) I figure I can make anyone feel better about what they're up to these days.... =)