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... :)