Monday, February 27, 2006
MRI, 'roids, and a crewcut
Hooray- moments of lucidity. I have been having crazy headaches that leave me a morphine junkie requesting a push every few hours. This lovely drug doesn't quite get rid of the pain, but it leaves me half-comatose enough to just be. Sounds pretty pathetic, but it's not that bad. They ordered an MRI to make sure other "icky things weren't going on in my brain" (doctor's words, not mine) and I'd point out the irony of that machine. Here's how it went: they stuffed some earplugs into my ears, fed me into a giant plastic eclair, and proceeded to run through the twelve most annoying sounds ever conceived. A little voice would say, "ok, this'll take six minutes", and then they would blast the sound of jackhammers all around my head. Then, the guy would say, "ok this next one will be four minutes" and then they'd inundate my brain with Atari-esque electronic fighter sounds. My personal favorite was the monotone high-pitched fire alarm for five minutes. When I was ejected, I had to laugh and joke with the radiology tech, but I think his stoic face didn't quite get the humor. Ah well, the good news today is that nothing "icky" showed up on the test, so they think the headaches are just from the spinal taps and since I won't be having those for two weeks (my last two came back negative), they anticipate these headaches should just go away.
My IV cocktail contains loads and loads of steroids, which thankfully keeps my appetite ship-shape (since food is and always has been one of my favorite aspects of life), but more importantly, I think I'm going to use these toward an event for Beijing 2008. Suggestions for a good event? Canoeing? Weightlifting?
Actually, despite steroids and appetite, my body is definitely shrinking. I just noticed that my legs look like chicken legs (from lack of walking?) and scarier still, my nose has the pince-nez look of post-surgery Michael Jackson. yikes! No one else seems to agree with my nasal assessment, but I am quite sure that at least a few ounces are missing from my snout.
My pillows, the floor, my food tray, everything gets covered in hair now. It's annoying. So, I think today I am going to break out the hair trimmers. I am praying for a GI Jane or Natalie Portman look, but will more likely attain Alien Nation or the goalie girlfriend from Shaolin Soccer. I do promise pictures.
In addition to the cards and things that make my day, I need to thank the following people.
Jenny for the adorable cookie bouquet, Oxy admissions for the real flowers (which the nurses appreciated!), Matt Warren for sending his friend Mike to check in on me, to Auntie Kathy and Uncle Bob for the lai-see (you will feed my grateful friends here for many non-hospital meals!) and the See's chocolates, Dean Sheehand, Diane, and Nora for being so flexible, helping me with everything Fletcher-related, and the hat/poster, Joe for the great DVDs!, Uncle Bill and Aunt Charlotte for all the amazing Chinese food, Sandy and Marc for the fabulous care package, and Andy-san for the good-luck token and the amazing wood-block painting. It's definitely getting framed and hung in Jaci and my new place. Love love love to you all. What would I do, where would I be, without all this support?
And, what's up with the Santa Maria contingent?? I am blown away. Are you all on a listserv or something? =) It's wonderful to hear from so many old friends; thank you for your posts and concern.
Saturday, February 25, 2006
My aversion to things electronic is ebbing, so I thought it's time I actually wrote something on my own blog. Not sure where to start since Jaci has been doing such a thorough and excellent job with this. I guess I'll just ramble and ask you to excuse possible lapses of organization or flow.
Yesterday, I had my favorite two procedures, a bone marrow biopsy and a lumbar puncture. Gripping the hands of Jaci and Erin, the first went very well- completely tolerable pain and I even got to see the bloody apple-core looking biopsy that they took out. Cool! The lumbar puncture had been messing with my mind because past effort were difficult, lengthy and caused surprising sensations due to sensitive nerves in the area. I'm not sure if it's because it was my fifth one or because of the beautiful sedative they gave me, but yesterday's went off without a hitch.
Let's see, not much else to complain about. My hair is definitely falling out, not so much that you can really tell by looking at me, but more by looking at my sheets, pjs, and pillows. I hope that I am not in denial but am in fact a decent enough human being to realize that losing one's hair just really isn't that big of a deal in the grand scheme of things. Since I will be doing chemo and radiation for quite some time, even after I leave the hospital, I'm not sure how long I will sport the Sinaed look. I am having trouble deciding whether I want to wear a consistent wig so as not to be so "look-at-me!" or if I should be just me, a girl without hair, for a while. Silly considerations all.
The more important consideration right now is still my white blood cell count. When I get up to around 500 healthy white blood neutrophil cells, I can actually leave the hospital and continue my treatment on an outpatient basis. Right now, I'm not even close. However, things look good for an early dismissal. The doctors won't promise anything, but I could be released as early as day 21 instead of spending the entire 29 days here.
Not that days here are so bad. I literally spend 99% of my time in bed, but am suprirsingly ok with that. There really is no where else I can or want to be. To get up takes great energy and to leave the room I have to transform into Bubble Boy even just to traverse this already air-controlled floor. I wear special socks that go up my legs to prevent clots from laying/sitting all day and have added a thin air mattress to my hospital bed making the comfort situation no problem. I would definitely have thought I'd be more bored but thanks to constant visitors (Yumi just arrived from Hawaii yesterday!), a steady stream of nurses and doctors, more loaned pirated movies than one can find on a Beijing street corner, and mostly due to a much more placid/slow/fatigued state of mind, I would rarely consider myself bored. Plus, I get this wonderful highlight every evening- mail delivery! Bad news travels fast I guess (in a good way?) because I have heard from people that I haven't talked to in ages. It's just wonderful and lifts my spirits immensely.
I'm a little nervous because tomorrow, Jaci leaves for L.A. for a few days. I know everything will be fine, but that girl knows where everything is in this room, what time I need what, who's coming when, and juggles it all with panache and grace. It'll be good for me to accelerate my independence a notch though. AND, through undoubtedly selfless and difficult maneuvers, Bess is coming to fill the slack. I know that she has work obligations that she is somehow sacrificing and balancing and I am amazed and so grateful!
Speaking of selfless and suprising acts of complete kindness, my friend Erin Moneymaker is driving out Jaci's moving truck with her Honda in tow and puppy in shotgun next week. It reduces our moving costs and, most importantly, gets furniture here in time for my release from the hospital. I can't believe she was able to make it work with her flight instruction schedule and is happily looking forward to the 44-hour jaunt cross-country. How does one repay one's friends for such things someday? My joy is that I will have my lifetime to do so for each of you.
So, Jaci has found us a nice townhouse on the Brighton/Brookline border here in Boston. It's neither too far from the hospital nor from Fletcher when I'm ready to start taking classes again. It sounds great- two bedrooms, working fireplace, nice kitchen, washer/dryer, parking space. Since I will be spending an inordinate amount of time at home in the next few months, I am relieved that it seems we will be living in a nice place. Not to mention it will serve as a cozy guesthouse for anyone/everyone who wants to come visit!
On an end note, it's snowing here. In my temperature controlled room, all I get is the joy of watching the flurries over the naked tree boughs without experiencing the chill or the wet. Let it snow.
Thursday, February 23, 2006
VISITORS DESERVE PROPS TOO!
Thank you to all the people who have come to visit. A huge thank you to all those traveling from far off states and to those who manage to come nearly every day! I wish you knew how much each visit lifts her spirits. (and for goodness' sake, let me know if I've missed someone please!)
Judy Murray - San Francisco, CA
Jaci Murray - Orange County, CA
Bess Ocken - San Francisco, CA (TWICE!)
Jamie Murphy - Los Angeles, CA (TWICE!)
Tom & Anne Allen - Atlanta, GA
Denny Wu - St. Martin
Luke Allen - St. Martin
Kent Cummings - Boston, MA (ALMOST DAILY!)
Uma Nithipalan - Los Angeles, CA
Marie Scott- Los Angeles, CA
Mike Halperin - New York, NY
Jason Reade - New York, NY
Christine Chu - San Francisco, CA
Lillian Sing - San Francisco, CA
Erin Moneymaker - Phoenix, AZ
Yumi Numata - Maui, HI
Charlotte & Bill Tung - Boston, MA
Anai Massey - Holtville, CA
Leslie Edwards - Pismo Beach, CA
David Rion - Boston, MA
Gab Thomas - Los Angeles, CA
Cynthia Tse - San Francisco, CA
and all the fabulous people from The FLETCHER School in Boston, MA, who come so frequently and give me the pleasure of watching Erica's face like LIGHT UP:
...on Day 13 of 29 --- in Chemo-speak...
PROGRESS THUS FAR:
-when Erica first entered the hospital, she was too weak to even sit up by herself. Lifting her head up was a chore. Now she is able to sit up, fluff her pillow, and reach for The Economist.
-from using a bedpan to independent bathroom trips.
-from yakking and unable to eat to eating like two sumo wrestlers.
-from waking every 60 minutes to sleeping for four hour stretches.
-from me washing her in the shower while she sat on a stool to standing (almost!) independently to bathe herself---if you don't count that little fainting spell yesterday...
-from the inability to get out of bed because of the pain in her leg to walking three laps the other day. Hopefully we'll beat that record today!
-from having four different IV lines in her arms to having only one Picc Line.
-from getting pricked every few hours to only once every other day.
-from having new bruises appear out of nowhere to vanishing purple and green smudges.
The other day, I ran into one of her many doctors. He explained to me that the reason all the doctors and nurses were so extremely concerned about Erica was because of the comparison to the 'normal' leukemic patient that is seen. Usually, they are admitted with a white blood cell count of 90,000-100,000 with the high being around 300,000. So when Erica presented at 750,000, everyone was shocked and hyper-alert. They hadn't seen anyone with such a high WBC count, ever. They had no frame of reference for what to expect and seeing how well she is improving, they are beyond thrilled. They said that they couldn't have hoped for a better outcome! So I would say that her largest accomplishment is bringing that insanely high number down to the 250 we're at now!
Today we are cutting her hair to a nice bob as her long locks are starting to fall out. I'm not much of a hairdresser, but I'll post a picture afterward and hopefully I won't botch it too much! She seems rather unphased by this loss... almost amused by the amount of hair that began to fall only yesterday.
At the risk of sounding even more like "The Gatekeeper" as I've (affectionately, i'm sure!) been known as, I must warn everyone again:
If you have any form of
Or you can’t sleep…
PLEASE don’t come in!
Erica is HIGHLY susceptible to any kind of germs…
You are doing her a disservice during this visit.
You know who you are. :)
Just smile and wave through the window!
Monday, February 20, 2006
With Erica now out of the hospital gown and into comfortable PJs (thanks Bess, Jill & Christine!), it seems that she is more eager to get out of bed and try to walk or sit in a chair. Her energy level varies as the day goes along but her appetite still seems to be going strong. Oddly though, she is drastically dropping weight. Each day is fairly similar with 95% laying in bed, trips of rolling her IV to the restroom, and an occasional round the floor. Her day is filled with visitors at all times and instead of being lonely, we have to request people to leave so she can rest! Mobility is so great and allows her to have a bit of freedom.. just a bit..
Two nights ago, we received our first noise complaint! :) With a room full of friends, we played Trivial Pursuit, ate Chinese take-out, and sang our fabulous rendition of Gin & Juice. (Congratulations to Uma and JASON for winning!) Last night was much more low key with a ladies movie night since she was rather rundown from staying up late the night before and, naturally, the chemotherapy.
This morning, we sat in chairs and played cards for about an hour before she had to rest again. While I left to go apartment hunting, she spent the last afternoon with Uma, Marie, and Jamie before they had to leave for California. Then after her visit with Kent, we went for a record-breaking three laps around the floor! Such a workout has left her resting in bed once again...
For now, things are stable: she is working on rebuilding her healthy WBC and normalize her vitals. She still receives two (horribly painful!) LPs each week, chemo, and lots of different fluids via IV. So far, I'm losing more hair each day than she is! So after each shower, I blow dry and curl her hair... it's so gorgeous!
Thanks again for the continuous flow of cards and well wishes! Martinez/Munoz: the cookie telegram is sooooooooooooo adorable and Erica just loved the creative gift!
Saturday, February 18, 2006
Bonjour mes amis,
I'm overwhelmed by the support and love I am undeservedly receiving. This list is far from complete, but I wanted to do a few shout-outs ASAP.
First of all, to Adam and especially Gioia, who were here with me on my first night and many days since. Secondly, to my family: my Mom and sis, who have been untiring advocates, comforters, and sources of humor in the last nine days. To my dear friends, Bess and Jamie, who flew out from California immediately during my first week. Their, along with Jaci's, sweetness, organization, and leadership happily pulled me through (hopefully!) the most dependent week of my adult life. To Luke, Anne, Tom, and Denny, whose smiles, foot massages, all the comforts Best Buy/BB&B gadgetry, and jokes buoyed my spirits. To Uma and Marie: for coming all this way and bringing me palpable love, care packages, and their beautiful smiles. To Mike and Jason, for hopping on the train to bring me the best kind of therapy: laughter. Thank you also to my seudo-sis, Christine, for coming out here this weekend and for offering medical expertise as well as support to my Mom. Thanks to Kent for your visits, your help with apartment shifting, DVDs, and for the best Chinese egg tarts Boston has to offer. To Karen, Rachel, the Alumni Office at Oxy, Miki, Gab, Professor Gideon, Auntie Adelaide and Uncle Tim, Auntie Lillian, and Anai, whose thoughtful care packages and sweet letters were unexpected and much appreciated. Thank you Marcin whose positive attitude and "24" synopses keep me smiling and looking forward to Mondays. Thank you to the Fletcher students who have taken time out of their busy schedules and holiday weekend to come see me or to sign cards and send well wishes. A special shout-out to the Boston Leukemia Team-in-Training for taking me on as a source of inspiration; I am humbled.
I apologize that this list is blatently abbreviated but please know that I have received all your cards, phone calls, blog posts, and the nurses appreciate the flowers that I cannot receive. Everything is so appreciated. I don't know how to say that in a less trite way, but I hope my gratitute is somewhat conveyed. I wish everyone could see my room covered in photos, cards, and I'm amassing quite the collection of books, SuDoku puzzles, and DVDs.
Merci merci merci a tous.
Friday, February 17, 2006
The past two days has it's ups and downs, a pattern we are learning very quickly. Two days ago we were able to get Erica up and she walked around the nurses' station as well as a lap around the floor. Granted, it was while she was all garbed up in a mask, gloves, and toting her IV machine!
Her afternoon then consisted of Jamie and Bess surprising her with wigs---as you may have seen on the previous blog---and friends gathering for a night of ordered-in Thai food. We played games and took her mind off everything for at least a little while. Her friends from Fletcher have been so outstanding and always supportive.
Yesterday was a bit more difficult with her LP, Lumbar Puncture, aka Spinal Tap. It was unsuccessful as the doctor was unable to hit the proper place & we are forced to repeat the procedure today under Fluoroscopy or an x-ray device. This tends to leave a sour note on our days...
Today is another lazy day of sleeping, between watching Season 2 of Arrested Development and the LP. Tonight Uma and Marie are coming in and Erica is thrilled to see them!! For now, just keep her in your thoughts and prayers as the chemo takes its toll on her energy and spirit.
She asked that I dictate a note to everyone, but for now, she's a bit tired. As soon as she's up for it, we'll get something more personal on here :)
Wednesday, February 15, 2006
Ok, per Erica's request, I have reluctantly agreed to post lyrics I created to the song Gin and Juice redone by Phish. She seemed to really enjoy it! :) Please listen to/download Phish and hear the song as you read the lyrics... give me a break, ok---it was written on little sleep last night around 2am! Jonathan E, I'm sure you can appreciate this!! :)
Gin & Juice Remix Chemo Style!
With so much drama in the B, MA
It’s kinda hard havin’ Leuk-e-m-i-a
But I, somehow, some way
Keep bringin’ down my white blood cell count nearly every single day
Can I, kick a lil’ something like this disease
And, make a few friends like Nurse Suzy
Well it’s two in the morning, and my pees still comin’
Cuz my bladder won’t quit!
I got nurses in the waiting room preppin’ my blood
And they ain’t leaving til shift in the mornin’!!
So whacha wanna do??
I got a box full of rubber gloves and the docs do too.
So turn off the lights and close my eyes
But (but what) no more aches in my thighs.
So we gonna celebrate that
Reds up, Whites down like your Mother Judy prayed for that!
Rollin’ round 6D, drippin’ chemo, sippin’ on soup and juice
Laid back (with my head on a pillow and a pillow on my eyes)
Rollin’ round 6D, drippin’ chemo, sippin’ on soup and juice
Laid back (with my head on a pillow and a pillow on my eyes)
Tuesday, February 14, 2006
Today was indeed a happy valentine's day! Erica recovered marvelously from a hard day yesterday by showing her smile all day long. Her white blood cell count has PLUMMETED from a whopping 750K to now... drum roll please.......................... 2.22K! We need to get it down to zero as every white blood cell is Leukemic at the moment and then rebuild all the healthy white blood cells.
Erica finally gained a bit of an appetite today and managed to eat much more than every other day. Although she is still dropping weight, no one seem worried & the nutritionist gave her the delightful task of finally counting calories in the opposite direction. :) SuperSize Erica!
After a shower, I blow dried her hair, curled it, and took pictures. She has said that until it falls out, she wants to do something unique to it each day! Tomorrow we are streaking in random wash-out colors and I think some of her wigs may channel a little Sidney Bristow! Yes, it's scary, but her attitude is beyond fantastic. Ultimately, we are envisioning a little pixie cut and we'll go from there...
This afternoon was difficult as the Spinal Tap turned into quite the procedure. After giving up, the doctor was encouraged by Erica to try one last time to complete his task. Viola! The last attempt was successful, but it turned into a painful afternoon. I tell you, her determination is out of this world.... The doctor is VERY kind, constantly apologizing for hurting her, and has assured us that he'll offer alternatives to avoid an event like today as this is must happen twice a week. However, in true Erica fashion, by the evening she was happy and we watched Arrested Development Season 2!
I pray tomorrow is a great day since we have so much planned to try to make it a GOOD day: a wheelchair ride to get out of her room, hair care, a ZERO leukemia cells party, and a night of ordering in Thai food! Granted she may end up sleeping the entire day away, but that's good too! I'll be happy either way.
I'm still working on pictures as I think you will all be so relieved once you see how beautiful she still is---some things never change. We are fighting like mad and I believe we are winning! Thank you to everyone who plans on coming out to visit, but as each day goes on, she is getting a bit weaker and weaker. Please know that this is a process that will continue for many months and your visits any time during these next few months/years are welcome---so don't worry if you need to come later. Now is tough anyhow with her needing lots of rest...
My last thought for the night is a special request direct from her doctor: many people have offered to help in any way and now I am requesting it. Please go to your local hospital or RedCross or anywhere they offer the services to try to donate bone marrow. Don't worry!! The procedure has changed and it is as simple as giving blood! No more surgery-type biopsy. Your information will go on a nationwide registery and once it is needed, you will be contacted. One of you may help Erica as I may not match her bone marrow. Pray I do, but perhaps one of you will? Please get on the registery! :)
p.s. SHOUT OUT to Bess Oaken today for donating platelets & PROPS to Jamie Murphy for trying... maybe your blood level will be high enough tomorrow, Sweetie! :)
Monday, February 13, 2006
February 13, 2006
Today is Day 3, in chemotherapy-speak. Unfortunately, today is not such a great day. She is very weak and the reality of it all is starting to set in. She is still uplifted by the thought of visitors, though! Truly, it is difficult to complain since we are at one of the BEST hospitals in the world for Acute Lymphocytic Leukemia and her doctors are fantastic. Her care here leaves nothing to complain about... except perhaps the frequent nurse visits in the middle of the night :) All in all, she is still doing so much better than three days ago. Each night, either Luke or myself will sleep in a cot next to her for the bathroom breaks every two hours or the necessary oral meds at odd hours of the night. So no worries: she is NEVER alone in there!
For a frame of reference: a normal person's white blood cell count is between 4,000-10,000. When Erica came to Brigham and Women's Hospital, her white blood cell count was at 750,000! After many treatments, it is now down to 125,000 which is still considered "Crisis" but all the nurses find her to be the miracle on the floor! We have staff coming by to check on her that aren't even her physicians just to see the girl who has improved from such a scary place. We are (oddly) so blessed.
Ideally, today they should be putting in a Hickman Line---a double lumen catheter---in a large vein in her chest. This will eliminate having to stick her each time they need blood, give antibiotics, or chemo. It will hopefully remain in her without infection until all her treatments are done, so possibly months or years... If there is no surgery today, we have the green light to put her in a wheel chair and explore the hospital. She is itching to get out of that room and explore. For those of you who know Erica well, you know that she is not one to sit still and watch TV all day!
Her friends from Fletcher are coming each day to say hello--when we aren't snowed in like yesterday--and this brings an instant smile to her face! Perhaps for those of you who were thinking of sending cards, include FUN pictures of yourselves or you and erica together so we can decorate the room some more. She misses EVERYONE so much.
Thank you again for your prayers-------every thought helps!
good morning, everyone,
the amazing response of support has been so kind.. thank you! please forgive the mass emails but i simply can't reply to everyone individually. similarly, if you know someone i missed on this, feel free to forward it along and i will do my best to catch up if you keep reminding me of emails to add. many of you were speechless & that is okay!! i completely understand the shock of it all and am touched that you were able to get out at least a sentence to send your love along. i will continually send as many updates as i can---possibly every other day or at least once a week?---so do not feel that you need respond to each as i know you love her & she can feel it.. her health is improving by the minute.. i will elaborate in a moment.
One request that was a common theme in the emails was curiosity of a mailing address to send cards. Please do so!! we have a wall that has already started accumulating cards and letters and i'm sure we can fill it in the 28 days she will be in that room. However, flowers or other live organisms are not allowed as they carry bacteria that can harm her right now... the address is:
Brigham & Women's Hospital
Attn: Patient Erica Murray
Tower 6D, Room 75
75 Francis Street
Boston, MA 02115
On to her health... i purposely avoid the medical details to share the big points and happy news. her white blood cell count is continuously dropping, fevers are dissipating, fewer tubes are used each day, and she is able now to sit up alone & even GET UP!! for a minute at a time. her breathe is short, but they are closely monitoring this & so far find it normal and nothing alarming. she was laughing tonight and smiles through the day. We even sat through a movie tonight since Luke spoiled her returning after a shopping trip to bed bath and beyond, best buy, and CVS. her room is slowly becoming decorated with cards, posters, pictures, and personal items. thoughout the day, her local friends come by to show support & stay for as long as she has the strength.. usually about ten minutes but today was a good day and one fellow was able to hang out for nearly a half hour! all sounding fairly minor, but outstanding accomplishments really!
i wish to leave everyone with good news which is that she looks amazing.. come on, it's erica! she is positive and has made me smile with many quirky comments: "I don't understand why everyone's making such a big deal about this?" "People are sending cards? It sounds serious when people send cards..." "I thought I was sore from doing Belly-Dancing Aerobics.. but I'm not out of shape, it's just the cancer."
For everyone that wishes to come visit, COME!! I urge you to see her as she has been lighting up when new visitors arrive. she misses all the kwoks and is excited when i told her so many oxy friends are booking flights. she loves that everyone is staggering their trips so she will see people thoughtout her stay. Two things I will warn you about first though:
1. SOOOOOOOOOOOOOO important: if you feel like you are getting a cold, flu, anything, just send a card. She has NO immune system right now and is living in her little sterile room and any germs just can't be around her. if you have a cough or allergies and sneezing a lot---best to stay away..
2. please understand that you may only get to converse with her for short periods of time.. although she is awake longer today than yesterday, it will be tough now that the IV Chemo has begun.. so come & see her, but be patient that she will be in and out of it...
well, i am starting my "shift" in a couple of hours, so i need to close my eyes for a bit.. Thank you again for all your calls and emails and i'm sorry if i can't get back to you personally for awhile.. i am geting everything and passing it ALL on to her. She must be hearing your prayers because she is exponentially improving! lots of love, jaci
Good evening, all,
whew.... ok, a moment to sit. First and foremost, thank you so much for your thoughts, prayers, and kind words of encouragement. My mother and I have been with Erica at Brigham and Women's Hospital since 11am this morning with many developments throughout the day. The basic information that I can offer right now is that she has been diagnosed with Acute Lymphocytic Leukemia (ALL) and is currently undergoing aggressive treatments. There have been more tests than I can share and already two rounds of chemotherapy. She is SOOOO strong and immensely brave. Yes, there is plenty more to share but it will have to wait as I promised her I would be back in her room within the hour. I promise to continue the updates. This will be a long road.. she is in the hospital for at least one month before they can release her and after which there will be years of treatment. She gets every message,
every text, and I think she feels all the good will being sent her way! For now, my mother and I will remain in Boston most likely until the month is through at which time I will most likely find us an apartment. Luke is here with us and ideally with each of us sharing rounds, she will never be alone in her room. :) Thank you again for all your prayers---keep 'em coming!