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?

tea party

check it out

http://www.youtube.com/watch?v=PTU2He2BIc0

stupid ode

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?

July 18, 2006

It's hot here. Even after spending the last two summers in humid Tokyo and Washington DC, Boston takes home the trophy for most sweltering. Because of the temp, I wear tank tops nearly every day-- thanks to Jaci and other friends, I have a good supply of cute tops that fit alright and make me feel at least half-way decent about my appearance, if I don't examine from the neck up (note: eyebrows and eyelashes are pretty essential to sexiness) or have one hand hoisting my jeans up so they don't reveal my desperate-to-reveal-itself gansta style.

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.

Pictures from 4th of July wknd in Maine

Consider This

I have two things to offer for consideration. If you have ten honest moments to do nothing but wonder/ponder/philosophize. I know, on one hand you want to say Of course! who doesn't have ten minutes to just think?? But it's hard to find time just to meditate or contemplate in this hectic world, isn't it?

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.)

Numero Dos:
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!!

Move over Marley and Me

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.

week 9

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.

"Weak" 7

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 jaclyn.murray@hotmail.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.]

Lance Armstrong

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.

LA Relay

Some of us LA folks (Jonathan, Ted, Katy Lim, Marie, Erik, Anai, etc.) are participating in theRelay for Life this Saturday (May 20th) in honor of you, Erica Murray.
http://www.acsevents.org/faf/search/searchTeamPart.asp?ievent=152619&lis=1&kntae152619=218A9C1E339D415DA24103691A24DBAF&team=1313235
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)

May 17, 2006

Thank you to the many people who have said they will donate!
Click on this to get started,
visit:http://www.marrow.org/cgi-bin/NETWORK/map.pl?ctr_typ=DC
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... :)

May 14, 2006

Happy Mother's Day :)
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... ;)

May 10, 2006

Thank you everyone for your encouragement and ideas. They really make a difference.
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.... =)

May 3, 2006

I have been willing myself to blog for almost a week now, obviously to no avail. Basically, it's because I really have nothing happy to say. I'm not sure why exactly that's a reason for reticence, as complaining is cathartic and I really don't care if I come off as negative right now. I am just having having an impossible time reconciling my illness and my life right now. I am basically bedridden and bored beyond explanation. I am constantly exhausted and therefore incapable of doing anything really except what I used to avoid (despise?): watch TV all day. So, within me resides the perfect catch-22 between aching to be active/productive and simply physically being unable. I'm not sure why my mind won't read any of the great books around me or let myself appreciate catching up on all the movies and Food TV that anyone could ever hope for. I do appreciate my friends and Jaci for doing everything in their power to make me smile. They are usually very successful at raising my spirits but it's fleeting and not self-catalyzed, you know? I laugh and love them so much, but my heart is heavy and refuses to be lifted. One reason I think I'm so depressed is that I was never sick with leukemia. What I mean is, I felt perfectly fine the night I went into the ER and was whisked into chemotherapy and blood filtering. So, all I feel is the pain of the treatment without ever suffering why the heck I have to go through two years of hell. Of course, I believe that I was very sick, but you see, it's only a belief- something someone told me. Leukemia, they say, is like that. People get a funky bruise or have a lingering cramp, they go to the hospital and boom, they're a cancer patient. For me, they tell me, it was even more dramatic. No time to discuss fertility options, treatment options, etc, so perhaps it's finally catching up with me. Will acceptance come next? I spoke with a man who just finished his two years of this same protocol and he commiserated that these thirty weeks (Phase III) were the worst for him; he said he spent a summer in bed. He wanted to show me how he's made it through and to show me I would too. Well, I know I sound bitter and people tell me I should grateful to be alive and I am grateful for me family and friends, but I take no consolation that I will feel better sometime in December. I'm embarrassed by people's sweet declarations of my strength... I don't know if I can handle this.

April 24, 2006

This is a tough blog to write. It's been a difficult day for Erica and by default, it makes it a little harder for me... This morning was our scheduled appointment at the hospital for week 2. She only received one chemotherapy shot today and again takes the rest at home during the week. After her appointment, we came home to recooperate, rest, and watch some ALIAS. (we're totally addicted!) Since Jamie offered to cook us a fabulous feast for dinner, we all took a trip to Whole Foods for some groceries. On our way to checkout, Erica's legs buckled and she couldn't stand. I held her up while Jamie grabbed a chair. I ran out to bring the car to the front of the store, only to see THREE people carrying my unconscious sister to my car. Needless to say, I was panicking at this time---she had fainted. One of the gentlemen carrying her just happened to be a doctor at the Dana Farber Cancer Institute and knows Erica's Attending Physician! He advised us to head directly to the ER at Brigham and Women's Hospital and he called ahead to let our doc know we were coming. Upon arriving, I reached via telephone our doctor's PA who calmed me down, gave me background that this is common for patients coming off the steroids she took the past week, and gave us the green light to take her home to rest.
So now, we are sitting on the couch, completing a crossword puzzle, and realizing that things are coming at us that we hadn't ever thought of... the real fear is the unknown. It was shocking and scary... My fear is that just moments before I had left her to pick up something in another aisle because she told me she could stand---what if I wasn't there? What would I have done without Jamie being here?? ... physically and emotionally, we are hitting some lows. But we are determined and looking forward to a better week ahead. It helps to realize that we are conquering each obstacle and makes us a little bit stronger.

!!!ERICA COURAGE Bracelets are here!!!

!!!ERICA COURAGE Bracelets are here!!!

Show your continous solidarity with our friend, Erica, in her fight against leukemia, by wearing an ERICA COURAGE bracelet!

Please feel free to contact Jamie at murphy_jamie@hotmail.com or jaclyn.murray@hotmail.com for more information. The proceeds will be given to Erica and her family.

Many thanks to the Fletcher Community for your ongoing support!

April 14, 2006

Today is the first day of the third phase of Erica's treatment. Leslie came to visit yesterday and is already following in Bess' footsteps having prepared a yummy dinner tonight, a nice end to a looooong day... our photo is to demostrate reality here: lots of Alias and lots of sleep!
We woke up early to get Erica to the hospital by 9am. Before each treatment, phlebotomy takes her blood to test all her counts and make sure she is healthy enough to receive the chemotherapy. After this was completed around 11am, our FABULOUS nurse, Kecia, brought in four different chemo meds--two were pushed through her IV, one was a shot directly into the muscle, and the fourth was in pill form. We waited for at least an hour to make sure she did not have any adverse reactions to the meds and were on our way back home...
However, today was the Boston Marathon! Coincidentally, the path to our house was blocked due to the runners... hmm, problem. So, after pulling out the map, we managed to find an alternate route through the city, over the Charles River, through Cambridge, and back down to Brighton. Originally, we had made signs and planned to go cheer for the amazing athletes at mile 22.8, but Erica was exhausted from the day. We did watch on TV as the first Kenyans passed the finish line though! Not to mention, our friend Adam Schoene who finished with an amazing time of 3 hours and 47 mins!! WOOHOO!
This next phase of treatment is comprised of ten 3 week sessions. Each three weeks repeats the same cycle: the first day of each week is in the hospital for "intensification", meaning chemotherapy that is not able to be given at home, fluids, blood work, etc. The rest of the week is spent at home with many oral meds. Week two is said to be more mentally exhausting because she will be coming off the high associated with the steroids given in week one. Finally, although week three still has medications, it should be easier allowing her to recooperate to start again for another week one.
It looks like Erica and I will be on our own for real now since Mom is leaving tomorrow. After not having left Erica's side since February 10th, she is returning back to the Bay Area. She promised to be 'on-call' if we need anything, otherwise we hope she will come back frequently! How can we ever thank our mom for being amazing, patient, generous, and supportive? We realize that words will never suffice... truly Mom-of-the-Year! WE LOVE YOU!!!

From the friends

Click here to visit http://supporterica.blogspot.com, a blog created by friends of Erica.

April 10, 2006

Sorry it's been a while since anyone's posted, but it's been a sort-of rough week. I've been home a month now and looking back, this month has posed different but equally difficult challenges as that first intense month in the hospital. A lot of it has probably been mental. It felt like such a victory to be out of the hospital, like it was supposed to be all downhill from there. So, it was jarring to find the CNS phase of treatment (central nervous system) so difficult to bear. Also, in the hospital, it's clear that I'm there to get better and sitting in that bed all day every day hardly phased me a bit. At home, I expect my body to be more "normal" and I'm impatient and frustrated by my inability to do simple things. Really, I suppose I'm just as sick as I was in the hospital, but now my nurses are my family and my bed doesn't adjust electronically. Anyway, I'm hesitant to state this but... they say the NEXT phase is better and I do have this week "off" to recuperate and rest, so I'm trying to find and celebrate whatever improvements I can find each day and look forward to things easing up, even if it's just a bit.

Poor Jaci has been suffering from the flu all week (even throughout her trip to Oregon!) and her parting gift to me was a cold. Now my angel is back and our house is filled with the symphony of our identical hacking coughs and trumpet nose-blows. I don't really mind my cold symptoms because they ironically make me feel "normal". I take DayQuil and NyQuil, not voriconizolidaniflocin or some such thing. Thank goodness Mom didn't get sick too otherwise we'd all be in big trouble!

Well, perhaps not in such trouble since Bess was here helping out since Thursday. Her mission was to help me get fat. Bess has turned into quite the Martha Stewart as she gave my Mom a well-deserved break in the kitchen and both of us many culinary treats. She took her mission seriously and instructed sternly me to "sit and eat cheese" with a cheese board in front of me and she always had some tantalizing dessert that i couldn't refuse after dinner. I'm sure she must have succeeded in adding a few pounds back to my somewhat bony frame.

I want to give a huge shout out to my A100 class from the Foreign Service who have sent me so much support and solidarity. I miss you guys so much and wish I was still in your ranks. Please keep in touch and fill me in on how your first posts are or how language training is.

Also, I have all the pictures from the hospital up in a Kodak photo gallery. If you would like to see them (perhaps to have a copy of yourself in a wig if you visited), just lemme know and i'll send the album your way!

Mom's Turn

(This picture was taken mid-March. It seemed fitting though a bit anachronistic. And the glass in my hand is non-alcoholic wine. Did you know they make that? Ok, Mom's turn..)


Well, finally it’s time for me to add my voice to the blog. Jaci, despite feeling sick, took off this morning at 5am to a much deserved R&R visit to see Jon in Oregon; Jaime is back in California and Bess hasn’t yet arrived … so I have free reign for now. =)

It has been a difficult last two months, often heartbreaking and tearful to watch Erica go through with her many, many painful procedures and all the side effects she has had to encounter and endure, and continues to do so. She is truly a young woman of strength, courage, endurance, with the determination to fight this frightening disease that has crept upon her so swiftly and so suddenly with no forewarning. She hardly ever complains and is so stoic in her pain and constant nausea. And Jaci, her staunch supporter, her best friend, her primary caregiver, her loving sister who makes her laugh and see the humor in so many ways that only a person who is so in tune with each other can do. During all those difficult LPs Erica had to endure, Jaci never left her side, holding onto Erica’s tightly clenched hands to ease her sister’s pain. I am proud to call them my daughters.

Yesterday, Erica finally finished the last of her four LPs and the tenth radiation treatment in this second phase of her protocol. This week, she sleeps a great deal every day- maybe 18-20 hours are spent with her eyes closed, although she often tells me she’s not sleeping. The fatigue and discomforts she’s currently experiencing is expected after the radiation treatments, etc, and we’re hoping she regains strength during this week of no hospital visits. She now has the rest of this week to recuperate and rest up for the next phase which could begin as early as next Monday. This third phase would entail chemotherapy repeated every three weeks along with a special drug administered weekly. These treatments repeat itself in cycles of three week for IVs, oral medications and the one injection and only every 18 weeks would she need another LP. I have no qualms that she will weather this phase with as much courage and strength as she has shown so far.

How to thank all the people that has shown their caring and love in so many ways? All the prayers and cards and gifts that were showered upon Erica have just been overwhelming… her high school friends from St Joe’s in Santa Maria, her Oxy buddies in Pasadena, her multi-national Fletcher intellectuals, not to mention friends from jobs, Japan, who knows where she meets all these friends… my mother, my sister and brothers and family members, those close circle of friends who call me constantly to inquire as to our wellbeing, my co-workers at SF superior court who have all been so supportive, members of my church group… just too many to name…but THANK YOU all…knowing you are all there has been a tremendous help.

And how can I leave out the fabulous care that was generated at the Brigham and Women’s Hospital and at Dana Farber Cancer Institute here in Boston? Their nursing staff and teams of physicians’ care have just been phenomenal. Not only are they attentive and caring but they all do it with a smile; are always so gracious and uncomplaining no matter what the request may be…even to taking care of Lola for a week. Where can you get that kind of attention and love? Last but not least, our own Dr. Sirulnik. Somehow you know that he cares for Erica and will do whatever he can to ease her pain and suffering and to carry out his Hippocratic oath to the letter. We were just so lucky to have had him as Erica’s attending physician.

Within the next month or so, Erica will discuss with Dr Sirulnik and the Transplant physicians the feasibility and/or viability of a possible bone marrow transplant. Meantime, please keep those prayers coming… Peace.

April 1, 2006

Erica and I are sitting here trying to think of something funny to joke about her Leukemia for April Fool's Day, but nothing seems appropriate or really all that funny... and our humor is pretty embrasive! Feel free to try on your own...
As for an update after her last LPs, she is doing FABULOUS!!! Not only did her amazing doc make it quick and as painless as possible, but she did not have any neck or back pain afterward. Her nurse took great care to prevent any unnecessary dehydriation by giving her two liters of fluids after her spinal tap. She is up and moving and even came to the dog park with me and Lola this morning!
Today, since the weather does not appear to be as nice as it has been the last few days, we are planning on going to a museum. Naturally, Erica will be in a wheelchair, but to be out of the house at all is special.
As always, we have a train of visitors coming this week: Luke arrived yesterday, Anita arrives tomorrow, and Bess is coming on Wednesday! I will be visiting Jon this week in Oregon which has left me feeling a strange twinge of seperation anxiety! Just trying to teach my mom the routine has reminded me of how many details there are to remember... flushing her PICC line (IV), explaining which pills to take at which time, describing which med helps alleviate which symptom, covering her PICC before a shower, etc. etc... yes, I know, my mom is beyond competent and I'm simply panicking on my own!

March 28, 2006

[This is a photo of Erica about to undergo radiation. The plastic mask is form fitted specifically to her face and the technician snaps it down to the table to keep her cranium still as she is only receiving the radiation to her brain. It is so difficult to watch her go through this--even for the mere minute or two it lasts--but she enjoys the music playing in the room during this time. The only complaint she has mentioned is the smell of burning during the procedure... it's even more creepy to realize it is herself that is indeed causing the odor.]

Just an update on our latest situation...
Each day, Erica is getting better and better. The pain in her neck and back are slowly subsiding. After an MRI showed us that there was possible leaking of her spinal fluid after an LP last Monday, it helped us understand her pain patterns. After laying down on her side for twenty minutes or so, the pain would nearly dissipate. However, shifting from a horizontal position to anything remotely vertical (i.e. sitting, standing, or merely propped up in bed) caused flashes of INTENSE pain all down her spine. Then back down from standing (with dull lower back pain) to laying down would trigger the pain once again. Throw in a few days of consistant nausea and our week is covered. Needless to say, last week was filled with sadness and boredom.
As the weekend approached, she was able to move slowly and this allowed some freedom from her bedrest. Jamie was amazing and helped out for the entire week and Jonathan & Ted, Auntie Shirley & Uncle Jimmy came to cheer her up for the weekend. Before the visit was over, she was walking around and socializing! I know the medications help her physically, but the support and love from friends give her inner strength more than anyone realizes. Each post on this blog, we talk about! Every time someone calls or emails, when Adam bikes over unexpededly from Medford MA to drop off mail, when Kent shows up with donuts... we talk about it. Words don't begin to cover it... thank you so sincerely.
She still has four more radiation appointments and three more LPs during this second phase of treatment. Unfortunately, tomorrow is a big day of both. Since we know what we *think* causes it -- yea, we pretend to be MDs -- we are taking precautions to hopefully avoid another tough experience. I'm trying to get her to drink as much fluids as possible to buff her up before the spinal tap and we plan to have her lay down for a few hours after her LP. Truthfully, I'm nervous... I will report back asap.
Our house is turning into a home as most of our boxes are unpacked and we are building a daily routine. Per Marcin's suggestions, we are looking forward to so many day trips around beautiful New England! Fishing, walking, bird watching (I'm still trying to convince her that we are just not OLD enough to do this), and letting Lola run wild sounds like heaven! Soon enough... :)

March 23, 2006

Jamie reporting from Jaci & Erica’s new condo!!!

Since Jaci and Judy accompanied Erica to the hospital today, I was assigned blog duties. I will do my best to fill you in on all of the happenings of the past few days and how Erica is doing. The past 3 days have been pretty hard on our girl. As some of you know, Monday was Erica’s first day of a 10-day radiation treatment. The radiation is done on an outpatient basis but requires her to go to the hospital everyday for treatment. Also on Monday, she received another of the dreaded lumbar punctures. The good news was that the lumbar puncture came back showing all healthy cells, the bad news was that the LP caused horrible spine and back pain that has pretty much made her immobile for the past 3 days. In addition to the constant back pain, the combination of radiation and chemo caused severe nausea. The only time that she is o.k. is when she is lying flat on her back covered in ice packs. She actually told me the other day that ice packs are her new best friend ;)

Getting her to and from the hospital the past 3 days has been very hard. Not only is walking and moving very painful for her, just about every time she does move, she has to head to the bathroom because of nausea. When we took her to the hospital on Tuesday for her radiation treatment, she had to be admitted to the Emergency Room so they could hook her up to an IV to administer fluids, anti-nausea meds and pain meds because she wasn’t able to keep anything down. After a long day on Tuesday, she was finally able to come home and sleep in her own bed.

Wednesday’s trip to the hospital presented almost as many challenges as Tuesday’s. The pain and the nausea were so bad that she wasn’t able to lie down for the radiation treatment. Her doctor decided to skip the radiation treatment for the day and focus on her pain and nausea. Again, they hooked her up to an IV and gave her fluids, blood, and more anti-nausea meds to try and make her feel a little better. She managed to get home a little earlier yesterday and she, Jaci, Judy and myself were able to enjoy a delicious dinner together.

Today’s trip to BW was a little better then yesterday’s, but this time she had to have an MRI to try and figure out what was causing the intense pain and stiffness in her back. The 3 hour long test was quite an ordeal but she had a fairly calm and pain-free afternoon. After meeting with the neurologist who examined her MRI results, we learned that she might have a small spinal fluid leak which is causing the pain. Spinal fluid leaks are usually patched up in a very simple procedure, however, since Erica will be having two more lumbar punctures next week, they thought it pointless to try and patch it up. So, they sent her home tonight with a new prescription for steroids and some new pain meds (including a FABULOUS morphine lollipop, no joke) and she is feeling better then she has in days. We just finished a delicious Chinese dinner courtesy of Auntie Charlotte and Uncle Bill, thanks for the chow fun!!!

She heads back to the hospital in the morning for one more treatment this week and then she will spend the weekend resting and having fun with this weekend’s round of visitors Uncle Jimmy, Auntie Shirley, Jonathan and Ted!!!! While the past 4 days have been a series of both physical and emotional ups and downs, she is still holding strong, and when the pain subsides enough, that beautiful smile still shines through.

March 19, 2006

The day before yesterday I realized I have cancer. Yup, all that hospital stuff, dropping out of school, my hair falling out didn't clue me in, I guess. The reality of the disease and the duration and duress of treatment has really hit home in the last few days. I think the lag time in real sadness/anger/frustration/etc is due to two things. One, in the hospital, there was a flurry of people and activity around me at all times. I was wonderfully distracted. And two, consultations last week with various doctors informed me of things I simply did not know previously. For example, I didn't know how harrowing a bone marrow transplant is. That it entails another month-long stay in the hospital or that one's immune system is completely wiped out requiring a year of recovering said immune system while living a very very sterile and isolated existence. Also, although I knew radiation was a phase of my treatment, now that it looms tomorrow, I am scared. The idea, the pur-pose, is to kill cells in my brain. I kind of like my brain and use it often. So, naturally, I am petrified and pissed and loads of other anxious emotions. Perhaps my future professors will grade me easier if I say I've had radiation to my head?

Other than emotional trouble coming to terms with all that looms ahead, I physically feel good. Today is the first day I can say that I don't have a headache in a few weeks. We've just been plodding away at the boxes, unpacking slowly but surely. Kent and Joyce were frequent visitors last week; they are always a delight and usually a help too with everything from computer concerns to home maintenance to helping in the kitchen. Thank you! And of course, what would I do, where would I be, without my Mom and Jaci who take such good care of me. Every time I complain, I know that it could be so much worse. I am blessed with amazing friends and family. Amazing. See, I told you I was emotional.

All in all, I feel physically ready to begin the next two weeks of treatment. I'm nervous mentally, but getting better. Here we go.

March 16, 2006

Yesterday was Erica's first visit back to the hospital since her release last Friday afternoon. Unfortunately, it was the one day that she woke up tired and remained exhausted for most of the day which made this outting a bit difficult. Coupled with the tiredness, she has been experiencing nausea for the last three days. Thankfully, Marie was here to help with everything from navigating me through the confusing streets of Boston, builing IKEA furniture, to holding Erica's hand and offering kind words.
While at the hospital, we received good news and bad news. The good news first: her body is in complete remission with zero leukemic cells still in her bone marrow! Her cell counts are that of a normal person and they are pleased with the retreating fungal infection. However, there always seems to be something negative to report, the bad news: we need to start thinking about if Erica should have a bone marrow transplant surgery. The pros of this are naturally that the new bone marrow would ideally produce all healthy white blood cells and the leukemia won't return---which could also happen without the transplant surgery, but a greater percentage with the surgery. There are four potential side effects that could happen if we go through with the transplant. (1) organ damage or failure; (2) infection; (3) Graft v. Host Disease (if the host, aka Erica, rejects the donor causing problems with her skin, GI tract, etc.); and (4) fatality.
This surgery would be a loooooong four week process with chemotherapy, radiation, and then the transplant which is administered similiar to a blood transfusion. Although the doctors' initial response to the ALL was to go ahead with the transplant surgery, there are now reservations because of her initial high white blood cell count but her fantastic response to the chemo may factor in too.... basically, we were told not to worry too much about this for another 8-12 weeks and they will keep us up to date on everything we need to know. During that time the doctors will be explore the three potential semi-matching donors from the registry and focusing on clearing up her fungal infection.
This sentence is just to end on a note other than fungal infection... my dog doing well! :)

Top Tens

Home sweet home. The journey continues. I am pleased to be out of the hospital although I am still very fatigued and spend a considerable amount of time in bed. The townhouse we’re living in is perfect and I am forever indebted to Jaci, my Mom, and all of the friends who have helped us and continue to help us get situated.

The highlight of yesterday morning (and perhaps of my twenties in general) was falling asleep in a motorized wheelchair in the grocery store. Yes, I am a rock star. After taking a three-hour nap to recover from the over-stimulation of Star Market, many friends came over for dinner. I am humbled by the warmth and love with which they shower me. (Picture is from last night- thanks Gioia!) I worry when I look in the mirror that I might gross someone out with my patchy bald head and gaunt features, but my friends and family seem to not mind. I feel embarrassed to wear a robe constantly and move like molasses, but no one seems to question that it is not sickness in their midst, but recovery. Anyway, suffice to say that the support I am getting makes me feel so positive and normal.

During my last few days in Room 75, I composed a Top Ten List of the best and worst of the 29-day hospital experience. Voila.

Top Ten Best Things:
#10. The wig wall. Almost every visitor who came tried on one of four exciting wigs and we ended up covering a closet door with fabulous pictures of men and women in pink, blond, and red coiffures. I figure some percentage of these up-and-coming young people will definitely run for public office at some point and these could be very valuable.
#9. Perma-Pjs.
#8. No phone. For some reason, talking on the phone gives me a headache, so with very few exceptions, I have literally not spoken on the telephone for a month. Although that leaves Jaci with quite the secretarial duty, it has been liberating for me.
#7. Losing my hair. Three great things about losing one’s hair include the joy of passing under an air-conditioning duct and feeling the tiny breezes on my scalp, the ease of putting on t-shirts, and no bed head.
#6. Hearing from old friends. I am blown away by how many good old friends have come out of the woodwork and look forward to reconnecting with them.
#5. Mail call. There’s nothing like it when the nurse walks in with envelopes and packages and you just can’t believe that they are for you.
#4. My room. It was decorated floor to ceiling with symbols of support and love. Thank you.
#3. Visitors. Don’t let anyone tell you that the power of laughter doesn’t heal. I could feel terrible all day and my fatigue and pain sometimes would just evaporate with the appearance of a new friendly face.
#2. Doctors and nurses. Everyone has told me that I am at one of the best hospitals for treating leukemia and I can attest that the staff of doctors and nurses at Brigham and Women’s Hospital far outstripped any expectations I could have had. My main attending physician is this hilarious Argentinean, who carefully listens to me, who is gentle, informative and down-to-earth. He is a patient-advocate and you can tell. My nurses…. Where to start? These women took care of me night and day, literally. Their efficacy, reliability, and compassion made for many tearful good-byes.
#1. Bringing my loved ones together. I love it when people from different segments of my life have the opportunity to meet and get to know one another. Jamie called it my “elf on the wall” trick (the joke sort of deriving from me being the obvious elephant in the room, but trying to be like a fly on the wall), but many hours of each day was spent in a semi-snooze listening to my Mom get to know my friends, or my sister get to know my graduate school colleagues, or a friend from Japan getting to know a friend from high school, etc. I loved just listening to their precious voices and knowing they were there.

Top Ten Yucky Things
#10. Missing Fletcher School lessons, functions, etc.
#9. Surrounded by great books, DVDs, CDs and no energy or alertness to enjoy them.
#8. “Mechanical soft foods diet”. After my oral/nasal surgery procedure, they gave me a new menu which had such tantalizing things as “pureed French toast”. You don’t do that to a girl on steroids who’s already down 25 pounds. I had to smuggle in Philly cheesesteak sandwiches.
#7. No privacy. The door to my room seemed ceaselessly to open. Close. Open. Close.
#6. Being in a constant tangle of IV wires.
#5. The days when I looked like a monkey. The timing was perfect. Just when we’d shaved my head to a pretty short scruff, I had a nasal biopsy that left one side of my face totally swollen. So, I had sort of the protruding forehead, the sunken beady eyes, big swollen lips. I was the missing link, I swear. Intelligent design theorists need not look further.
#4. Numbness of fingertips.
#3. Soreness of teeth. Like when you get your braces tightened.
#2. Waking up every 1-2 hours for: bloodwork, new IV fluids, blood pressure readings, temperature readings, oxygen readings, heart rate readings, or just to go to the bathroom.
#1. Scaring my family. Because I felt so (relatively) healthy at the time of my admittance and because the team of doctors gave me just the right balance of direct information and encouragement, I never realized that my life was in danger. I still feel worst when I witness the painful empathy of my family. It’s not that bad, I swear!

***
By the way, I realize that many of you have background questions. Whether they be medical about just how I ended up in the ER on February 9th, or more "deep background" if you thought I was in Japan, or Washington DC, or engaged in the Caribbean-- how did I end up going to grad school in Boston right now? I do promise to do a blog or two about that soon.

March 9, 2006

Today has already been quite busy: bone marrow biopsy, LP, numerous IV bags, and a chest x-ray scheduled for this afternoon. However, Erica is positive through it all because of the great news we received: she is going home TOMORROW! :)
Her day is going to be spent taking down all the pictures, cards, artwork, and decorations. Our guess is that it will take both days to clear it all out! (Can you see just a smidge of all the love on the walls in the picture??) As for now, she and Kent are solving crossword puzzles meant for geniuses... Her energy level is still low, but she is able to get up and walk around a bit. The doctors are encouraging her to resume her life as normal--if normal means never dusting, not overexert herself, and spending her days on the couch enjoying TiVo!
I must say that it will be hard to adjust to a life of nurses, doctors, and constant attention to merely a weekly visit... I offered to come into her room every two hours in the night, turn on the light, fiddle with her PICC line, take her temperature, and pretend I know how to take her blood pressure just to help her transition! She turned me down... But I do think it will be a bit sad not seeing so many of the nurses that we've come to enjoy SO much and the daily visits from her doctors will be missed too!

New Address Requests

Since Erica will probably be released from the hospital this weekend, some folks are asking for our new address. Cards, packages, letters are wonderful medicine- so keep 'em coming! However, we don't feel comfortable putting our address online like this, but if you're a friend who'd like our new address, would you mind responding to this blog with your e-mail address and we'll reply asap?

March 6, 2006

Three days ago, I attended the Faculty-Waits-On-You Auction dinner at Fletcher. This year they decided to donate the proceeds to the Boston chapter of the Leukemia and Lymphoma Society in honor of Erica. WOW. This event was so amazing! From the moment I walked into the room, I was greeted by Dean Sheehan, Professor Trachtman, Professor Burgess, many of her classmates, and lots of her friends. I saw a poster that read, “Fletcher Supports You Erica” which brought me to tears… During the evening, our table toasted to her (each person in a different language!), the auctioneer raised his beer and reminded everyone of the personal connection to the cause, and many auction winners gave their prizes to Erica. Thank you to Marcin for inviting me and special thanks to Rose and Allison for making the whole event so special. [Pictures above are from that event. The hospital room can look equally festive at times, so I thought I'd better distinguish.]

On to more serious matters. Later that same night, one of Erica’s many wonderful nurses, Donna, noticed a bit of swelling around her right cheek and nose. An Ear, Nose, and Throat doctor was called in around midnight and decided to perform a biopsy in her right nostril that night. So, around 4am, Erin $maker arrived at BWH with the U-Haul, my car in tow, and Lola the pup riding shotgun. Thanks to Leslie, who is now chummy with the head security guy here at BWH, we were allowed to leave the truck in front of the hospital until 8am---with Lola still sitting shotgun. At 4:30am, the ENT performed the painful biopsy and Erica was given lots of morphine to sleep. Leslie and I took that as our opportunity to unload the U-Haul so we met our “moving team”--consisting of Kent and his roomies, Adam, and Marcin--at the new place. We were back at the hospital by 12:30pm when the WONDERFUL Adam and Marcin offered to take Lola to Tufts for the afternoon! THANK YOU! :) Nurse Donna and her four dogs are now watching Lola until Erica gets released from the hospital. Her flexibility and generosity is truly a blessing.

Later the following afternoon, the ENT docs decided that they wanted to go in to perform another biopsy in her upper cheek because of the swelling that was spreading towards her eye. Instead of cutting through her ‘smile line’ that would definitely leave a scar, they put her under general anesthetic and cut above her gums from the inside of her mouth. When they wheeled her down to the OR, there was some drama about her food intake. A team of anesthesiologists, ENTs, and oncologists were called in to do a risk/benefit analysis of whether the brownies (cookies, juice, soup) she had eaten an hour before would cause a problem during surgery. When going under general anesthesia, the patient should not eat 8 hours prior, but no one informed Erica of this! Basically, the huddle concurred that the chance of her aspirating (puking) into her lungs causing pneumonia or other lovely infections for a gal sans immune system was only a potential situation and was therefore less of an emergency than the fungal infection in her brain causing the swelling. How crazy is that: Erica‘s lying there hearing the docs say, “ok, we are just trying to decide which is worse: the pneumonia in your lungs that could kill you or the fungal infection in your brain that could kill you. Oh, and we should really decide which one's worse in the next five minutes.” Super. Thankfully, there were no complications during the procedure so it was a good thing they went ahead with it and we are simply waiting for the swelling to subside and for the pathology report.

She returned to the room about 10pm after waking in the recovery ward, but had a rough night with little sleep. The nurses gave her morphine every hour and her discomfort lasted until the morning. There is minimal swelling now on the right side of her face (but she won’t let it go that she thinks that she looks like a cross between a monkey and Lucy---yes, Lucy. The first primate to walk upright found in ice! Each time the name Lucy is mentioned, she breaks out into crying laughter!). After we showered, I shaved the last of her hair off and she is still gorgeous!

Today she received the news that her WBC count is now at 1310! Once her Actual Neutrophil Count (ANC) is above 500, she is able to be released from the hospital. DRUM ROLL PLEASE… her ANC is at 877 today!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Granted with everything being so hectic this past weekend (the facial/nasal infection), we are going to stay here until the full 29 days. Which means, in five days, Erica may get to come home!

Needless to say, she has not checked her e-mail for many days due to the headaches and is pretty disconnected. Sorry to anyone who's been trying to e-mail her. Again, this blog is the surest way to get her a message. And, of course, the cards that continue to pour in from friends, old and new. Thank you! You make US so happy when her face lights up at visits, mail, and messages.

March 3, 2006

I'm baaaaaack! - jaci
First, thanks Nurse Bossy Bessy for all your attention and love bestowed upon Erica in my stead! Secondly, if you would like to call Erin $maker, be sure to do so within the next twelve hours since she arrives in Boston tonight. And my third shout-out is to our cousin, Robby & his wife Emi: CONGRATULATIONS on the pregnancy! We look forward to spoiling him or her. :)
As far as Erica goes, the last four days has been a blur of morphine and headaches. Her teeth ache as well as the hair on her head--similar to when one's hair has been up in a tight pony tail. Her stomach aches have completely subsided and thanks to the drugs, she sleeps the day away.
The Fletcher School has an annual Faculty-Waits-On-You Dinner which includes an auction. This year all the proceeds are going to the Boston chapter of the Leukemia and Lymphoma Society in honor of Erica. I have been invited to attend so I will happily report on the evening's festivities in the next blog!
Finally, thank you to everyone who has sent care packages. You know who you are and Erica is deeply touched!! Not to mention, our tummies are happy and full. :)

Lt. Leslie Edwards has written a walking cadence in honor of Erica's stay here at Brighams & Womens to the tune of a traditional army song:

On top her head she wore a freezing ice pack,
She wore it in the morning and the rest of the day.
And if you ask her why the heck she wore it,
She wore for those headaches that would not go away!

In her arm, she has an IV line,
She has it in morning and the rest of the day,
And if you ask her why the heck she has it,
She has it for the cocktails that take her pain away!

Behind her door, she has a pump to sanitize,
She has it for the germs that dance around all day,
And if you ask her why the heck she has it,
She has it for her peeps to take the germs away!

Please note that Erica now EAGERLY anticipates a (PG!) rugby song from Jamie, Marie, and/or Chris! :) Jump on it!!!

If you have a minute, call Erin!

First things's first. Yes, her last name is the kick-ass unique name, Moneymaker. My friend from high school, Erin, has benevolently offered to drive from Los Angeles to Boston with all of Jaci's belongings, her car towed behind the u-haul, and her dog, Lola, by her side. She has agreed that I can post her cell phone number on this blog, because I think it would be nice for her to have lots of phone calls to keep her awake and motivated on this long journey. She is really nice, really sarcastic, really smart, and talks a little bit fast-- you'll love her. WINDOW OF OPPORTUNITY NOW CLOSED. PHONE NUMBER IS CLASSIFIED INFORMATION. I think she goes through many places without reception, so a message works too! Thank you.

March 1, 2006

Bess reporting from Boston:

As we welcome March at the B-dub I am happy to be able to pass along some messages and information regarding our favorite lady, Miss Erica. I am happy to be here while Jaci is packing up for her move to Boston. These were some big shoes to fill and I am so thankful to Jaci (and I am certainly not alone) everyday for being such a great caretaker.

Last night we had a fiesta and had some yummy mexican food brought in (thank you Auntie Kathy) with some Fletcher friends, Kent, David, and Anna! Anna arrived yesterday morning and Erica has been so happy to have her wise, insightful and sweet Anai around! We took some more photos for the wig wall (photos to come), listened to some West Coast rap and Erica sat in a chair the whole night! Leslie arrived later in the evening and we got to visit with her for an hour before it was time for E to attempt to get a good night sleep.

As I was kicking everyone out of the room (see, I am trying, Jaci) the nurse administered her nightly cocktail of happy sleep medicine so that hopefully since the first time since she got here, could have an uninterrupted night of sleep. Erica wanted to go to the bathroom one last time so that wouldn't wake her up. So the usual drill, get up out of bed, tug the IV tower, do the business- except that the next thing I know she took a head dive into the shower. Since she was attached to the tower, the Picc line in her arm was so tight and I couldn't get it any closer. I ran to get the nurse and when we got her up she kept falling forward, almost like her head was too heavy (and she wasn't even drinking). She was a bit confused and disoriented so she got some oxygen. We got her back in bed, checked her vitals, docotors came and went, and she is doing fine today. There was a CT scan this morning just to be safe and it appears that she just bit her lip. Even falling she is graceful! We think the medicine just hit her really fast but her headaches are still around.

She had a sleepy morning, just ate some more breakfast and is looking at high school photos with Leslie. Erica was very stylish in the 80's and I will leave that up to your wildest imagination. Bongo tapered jeans- WOO HOO- HOTTIE! Thanks to Leslie for being here and all the reminiscing. It was fun to listen to them try to decode the list of inside jokes they made when they were younger.

All in all, I think the constant stream of visitors are doing wonders for Erica. It is amazing how fast time flies in this room. We keep joking it is a vortex because all we do is sit, talk, eat, nap, read and the next thing you know the whole day has passed. We manage to keep her laughing, Dr. Sirulnik constantly has a comeback or two when he comes into visit, we tried to explain to Judy who Nick and Jessica Simpson are and mail time is her favorite time of day (so keep them coming). Speaking of Judy- she has been such a great person to hug and drink some tea with. She is progressing with her technology skills- I imagine soon she will be blogging too!

The nurses fight over who get to be her nurse for the day, she has such a great attitude and she cannot wait to move into her new place with Jaci. I tried to include as much info and fun facts as I could when I am not here in Boston, I stalk the blog. I should sign off now, thanks for all of your support and love.