Thursday, December 11, 2008
When Jaci first talked to me about doing this, my biggest fear was standing up here before you and not being able to get these words out. But after Erica passed, my fear changed. I wasn’t nervous anymore about standing here and crying, I was nervous about finding the right words. It’s enough pressure for anyone to eulogize their friend, but to do it for a woman who always had the right words – whose eloquence, creativity and wit were evident to everyone she came in contact with – is a truly daunting task. Whenever I was at a loss for words, whenever I needed help with grammar and punctuation, whenever I needed a Scrabble triple-word-score worthy word, I always turned to Erica. And here I am now, left to my own devices, so E . . . let’s hope you taught me well. Here it goes.
Erica, E, EJ, Murray 1, Reekie, Beek and always her favorite . . . Erica…names for an extraordinary woman who I have always been, and will forever be, so honored to call my best friend. [Note from Jamie: The former “Erica” is pronounced the way Erica pronounced her name (with the emphasis on the 2nd syllable), while the ladder “Erica” is pronounced the traditional way (with the emphasis on the 1st syllable). Clearly, the joke loses something when reduced to writing!] I could stand here before you today and talk about Erica’s compassion, her intelligence, her sense of humor, her smile, her sparkling eyes, her incredible love for her family and friends. But these are things you all already know. So my job now is to tell you a few things about Erica you may not know.
Like how Erica’s closest friends throughout her life were just the right combination of alike and different. Erica was one of those very rare and special people who enjoyed the company and friendship of people who didn’t always share her views or who said things she would never say herself. For instance she often times left it to me to make an inappropriate, politically incorrect joke while she laughed and shook her head at me all at the same time.
Or how, before her days of hob-knobbing with other over-achieving, international do-gooders at Fletcher, Erica was a rugby-playing English major at Oxy. And before that, she graced the halls of St. Joseph’s Catholic School in Santa Maria where she swam, was homecoming princess, and worked at Hot Dog on a Stick . . . oh that’s right . . . Hot Dog on a Stick . . . sorry E.
Or how she’s a canuck! That’s right, she was born in Canada. Her Mom Judy lovingly described Erica’s birth on the blog that Erica kept as a way of sharing her journey over the past few years. In the post written on Erica’s 29th birthday, Judy wrote of her baby girl:
“At precisely 7:47, 29 years ago, the sweetest most beautiful baby girl arrived in West Vancouver British Columbia. She was the cutest little baby weighing in at 6lbs 10 oz with the most engaging smile ever. Today, this same lovely little baby has metamorphosized into a wonderfully strong, intelligent, inspiring and beautiful young woman.”
Another thing you may have not known about Erica is that her favorite city in the world was Paris. Up until about a year ago, she always said that she didn’t have a favorite city, but sometime recently (and I think I know why), that changed, and she said she knew that she would always feel at home there. So, the next time you are in Paris, please think of Erica. Visit a museum for her. Sit at an outdoor café, sip espresso, and people watch for her. Try speaking French at the risk of being laughed at . . . and when that happens, laugh too because you know Erica would have been proud of you.
Erica once said to me that she felt like she was a jack of all trades but a master of none. She knew she was talented and creative but didn’t feel like she excelled at any one thing. But I beg to differ. Erica was truly a master of human relationships. She had the most amazing ability to make everyone she came in contact with feel like her best friend. And she made friends to the very end. She was naturally the most welcoming and friendly person I have ever known, and she brought together people from around the world as her friends. Very shortly after Erica was first diagnosed she created a top ten list of the best things about having cancer . . . leave it to Erica to find the bright side of having cancer ;) The number one thing on her list was bringing her loved ones together. She said: “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 were 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. I loved just listening to their precious voices and knowing they were there.” And Erica has accomplished this more than she will ever know. I realized yesterday that while I may have lost my best friend, I have gained another mother and another sister in Judy and Jaci.
To my Chinese mother Judy, thank you from everyone else who loved Erica for not only caring for her, but for us too. You shared your little girl with so many people, and we will forever be thankful to you for that gift.
And to Jaci…I know Erica told you constantly just how she felt about you, and I could go on and on about her love for you, which was clear to anyone who ever saw the two of you together. But I’m not going to, because it was SO evident to everyone in this room and because, honestly, I don’t think either of us could handle it. So all I am going to say, one last time for Erica, is “big wing.”
A few days before Erica passed, an anonymous Oxy staff member wrote one of the most beautiful posts I have read so far. The part that touched me the most was about Erica’s smile. The post read: “Her ability to take us along on the tragic and cruelly unfair journey she has been on these past few years, with grace, dignity, intelligence and humor is truly amazing. It speaks volumes about her strength, and her inner beauty that is matched so completely by that radiant smile she so often beams. I think it is her smile, immediately engaging, immediately inviting and immediately warm that radiates and gives you a sense of comfort in her presence. In Oxy staff meetings I would often look across the table and see that smile, matched equally by her intelligence and enthusiasm, and I would think to myself - wow, she is something.” I don't think I have ever known a more beautiful smile. I hope that none of us will ever forget that smile…I know I never will.
A week before Erica went into the hospital for the last time she asked me what I thought would happen to her after she passed away. At the time I gave a basic and reassuring answer in an effort to calm her and ease her fears. But when I think about it now, I like to think that Erica is now forever enjoying what would have been her ideal day here on Earth. She is with her Mom, Dad, Jaci, and Linda. She is surrounded by her aunts, uncles, cousins, and countless friends. Her days consist of a rotating schedule of crossword puzzles, card games, group reads, yoga, political debates and dim sum. Barak Obama is President for eternity, and not recycling is a crime punishable at law.
It was clear to me from very early in our friendship that Erica had a special combination of compassion, integrity, sense of humor, strength, morality, and world consciousness that very few people have. She made an immediate and lasting impact on whomever she met and encouraged those around her to strive to live life to the fullest.
Erica taught us all many things over the past few years. One of the things that I am most thankful to her for is teaching me the true meaning of the word “selfless”. I saw it everyday that I was with Erica. She was by far the most selfless person I have every known. She would do things for other people no matter how badly she didn’t want to just because she knew it would make them feel better.
One last thing that I want to mention was her sense of humor. The girl knew how to tell a joke, was always quick with a great come-back, and could find humor in just about anything in life. This was evident in most of Erica’s blog posts. The blog was created to give Erica’s loved ones updates on her health and treatment but quickly took on a life of it’s own. Some of her more creative and humorous posts over the past two years were her December 2007 “12 Days of Cancer” post and, my own personal favorite, her October 2008 missing I-phone post. My favorite part of that post being: “The search for the missing iPhone has been conducted in a professional and thorough manner. Amber alerts have been issued on the 101 and 280 freeways. Digital Voicemail-sniffing dogs scoured the patient units, the 3rd floor VIP room, the cafeteria, and the radiology ward, places EJ's Mobile's owner has frequented lately. As each hour passes, the owner has less hope that the mobile device will be found intact. ‘I have had it for about a year and half,’ the owner, who wishes to remain anonymous, said. ‘I'm not sure how I will be able to fill the hole its absence has left in my purse.” The girl was funny!
Over the past few days I have been looking over old blog posts, e-mails, and letters from Erica, searching for some of her words. As you can imagine, I had an endless supply of poetic passages from Erica that I could have shared with you. But the words that I have chosen aren’t necessarily the most poetic, but the most poignant. In an e-mail from her to some of her closest friends on January 13th of this year (two weeks before she relapsed) she said:
“The first year of treatment was awful, the only specks of sunlight being the love you all showered on me. 2007 was a year marked by growing strength, growing hair, growing happiness. While undergoing treatment, I completed one year of my master's degree and managed, despite my family's and doctor's worries, to still do some of things I love, like traveling. Still, I'm not sure I can remember what it's like to be 100% pain free, to not be anticipating the next invasive needle, to not know which of the cocktail of drugs I'm on is causing today's particular pain. My optimism for 2008 is severely hedged by cautious anticipation of lingering side effects and, of course, relapse concern, but I still think that getting this far is worth a bit of a celebration.”
So that is what we will do for you today, my dear. We will celebrate your life, our love for you, and your love for us. We will laugh and smile and cry in your honor, and we will do it knowing how much fun you are having watching us. We love you, we miss you, and we will forever be better because of you. I love you E!"
Friday, December 05, 2008
The last week has been a beautiful and natural progression of tears and laughter, memories and hope... I am confident that her spirit will never leave us.
There is one moment in particular I would like to share... Yesterday afternoon, we were able to wheel Erica's entire bed outside into the garden to enjoy the sun and perfect California weather. We sat with her for nearly two hours and I'm certain she enjoyed this.
The funeral will be held Tuesday, Dec. 9th at 10:00am at Our Lady of Mt. Carmel Church (400 Fullton Street, Redwood City, CA). After the service, we will have a Celebration of Life at our dear friends' home, The Wang's (214 Olive Hill Lane, Woodside, CA). The Celebration will follow after the church service until 4pm. Due to the number of people who love Erica, we are prepared to accommodate everyone with valet services at the Wang's home. Additionally, we ask that in lieu of flowers, please make a donation in Erica's name to the Leukemia and Lymphoma Society.
Personally, my heart hurts. I am grateful for her release of pain, but so selfishly want her near me, to grow old with me, and fulfill all the dreams we had together. I acknowledge that I may never fully heal from this experience--and that's ok. I don't want to forget this raw ache because I believe it will be my guide to live a life she would be proud of... I will miss her smile, her kisses, and her unwavering support... oh, the list of things I will miss can go on forever... my soulmate...
The last three years has shown me what it is to feel truly thankful. I am thankful for time with Erica to tell her daily that I love her... I am forever grateful to the support team that has built up around me and my family. Words don't begin to scratch the surface of my gratitude and I know that I will try my hardest to repay these kindnesses.
I hope you all can find a sense of peace too....
Monday, December 01, 2008
This is an extremely sad moment for us all. What Erica wanted most was to make this time “calm and natural”. Music will be played in the background, stories will be told, tears will be shed, laughs will be had.
At this point, for yourselves, do what is “calm and natural” as well. If that means hugging your closest loved one, going out and celebrating Erica’s life, commenting on the blog or whatever makes you comfortable, please do so. If that means flying to San Francisco, then that is what you should do. If you choose to do this, it is uncertain whether you will be able to see her or not, as family need to be with her, but being close to a group of Erica supporters may help the mourning process and commemorate the absolutely wonderful life she has lived.
We will keep updating the blog with any new information or changes that occur.
To lessen the burden on the family, please contact Jamie (805.501.1972) or myself (719.650.3258) with any questions.
With much love and sadness
Sunday, November 30, 2008
I think that perhaps the details aren't as important right now, so I choose to skip the medical play by play.
I do tell her about the posts of encouragement and love... it's important that she, and everyone else, know that there is so much love in this little room. I will post again when there is a change or anything new...
the tears don't seem to stop flowing, even as i type this... we are at a loss. the largest loss since this all began because we dont have her strength to guide us now. i can't and will never describe what it was to see my sister endure a seizure... two seizures... i don't wish that on anyone.
i don't know what will happen today but the plan thus far is to keep her comfortable and calm until we know the results of the MRI and go from there. The head CT post-seizure #1 didn't show any bleeds and we are told that she looks similar to pre-seizure.
we will take today as it comes. please please pray....
Saturday, November 29, 2008
Many of you have already heard the news: after a wonderful evening of dancing at Jill and Gary's holiday party yesterday, Erica had a very rough night. She spiked a fever of 102* F and then starting to throw up blood. Luckily, Josh was with her and rushed her to the hospital. We've been here all day, but she has been sleeping thanks to the OBSCENE amount of pain meds given this morning.
This morning, Erica was complaining of an extremely painful headache. They gave her a LOT of pain medication to help alleviate it. Now, nearly six hours later, she is still sedated by the medication and rather non-responsive. When she does seem to stir a bit, she mumbles incoherently and goes back to sleep. They gave her naloxone to try to counter the effects of the opioids in an effort to interact with her. It only caused her to become very scared and agitated. This lasted for a few minutes, but she's calm again now.
As of right now, her temperature is holding strong at 103.8* F. She has a nasal tube for oxygen and a steady flow of antibiotics and fluids.
Everyone should just hold tight for now--don't book a flight or rush over to the hospital. She is in a sleep induced state now that prohibits her acknowledgment of anyone in the room with her. I am here with my mom and Josh, so she is never alone.
As things are in a state of limbo now, I will *try* to post regularly. We don't know what the results of the CT and chest x-ray are yet and we are still waiting to take her down for an MRI.
Until then... peace.
Sunday, November 23, 2008
I'm here because I woke up with a high fever on Thursday, 11/18, and fevers are a good sign that there's some kind of infection in the body. Because my white blood cell count is so low, other indicators may not present themselves (such as pus, swelling, etc), we and the docs are left wondering at the source.
Meanwhile, the results from Wednesday's bone marrow results were not happy. One's bone marrow should be filled with white blood cells (as one is as a newborn); I apparently only have about 10% total up in there (what a 90-yr-old might have) and of those, 80% are leukemic.
It's Sunday now and I've been without fever for 24 hours. Another 24 and they will assume that one of their IV antibiotics did the trick and I can go home.
Whether here or there, the same questions loom about the big picture. The "how do we keep this girl alive as long as possible game?". I can see the doctors all white-coats-aside throwing darts at a board with the following in various rings:
should she do another round of vidaza/myletarg?
should she can another infusion of cells from her original donor?
should we just send her home and let hospice take it from there?
should we try XXX brand of chemo next?
So if anyone asks you, How's Erica? you can say that neither she nor her doctors have any idea.
For me, my emotions are all over the place. So much sadness. sadness. sadness. a bit of anger and fear.
Friends and visitors and all that the tokens they send remind me why life's worth fighting for.
Tuesday, November 18, 2008
We are enjoying each day for what it is and have sort of jumped the gun too by putting up a Christmas tree a wee bit early this year. Every other day, Erica still must go back to ITA to have her blood drawn and has consistently needed platelets. Some days she has more energy than others, but has taken to napping each day and sleeping 10+ hours a night. She has a pretty decent appetite, and with all the amazing dishes being sent over, it’s hard to object! Her spirits are always the highest when she’s with family and friends. So it’s good to see that some things never change!
One new development is the inclusion of eastern medicine to Erica’s continued western treatment. She still receives her low-dose chemotherapy monthly and takes all the meds prescribed by her physician at Stanford Medical Center. In addition, we went to meet a woman who is a Chinese herbalist and has been treating patients with a variety of ailments with treatments/herbs utilized for thousands of years. She spoke to Erica through our Mom (aka “translator”), asked about the meds she’s currently taking, felt her pulse, and examined her tongue. After a minute or so of “aaaahhhhhhhh”-ing, she came to the conclusion that a specific blend of dried herbs boiled for a couple of hours will fix Erica’s chi. In short, Erica’s immunity needs help, and her chi sucks. We quickly found that the final product of this boiling is something like a stinky brown sludge. Our Mom now boils this in an electric pot/kettle out on the balcony so we don’t have to smell it in the house, but poor Erica still has to drink two bowls a day! After cheerleading it down her throat, I stepped up to show her that it’s just not that bad… I found out that it’s far worse than Erica ever let on! One sip had me coughing and gagging, and she drinks bowls of sludge! So after this experience, I admit that most of my skepticism regarding eastern medicine was put to rest knowing that Erica believes in its healing properties enough to endure its flavor. I am not extremely educated in eastern philosophies and medical ideologies, but I certainly respect it.
In case we don’t post again before Thanksgiving, from our family to yours, gobble gobble all the goodness this year! It’s hard to imagine a family more thankful than ours: to know Erica, to love her, and to have the privilege of each day with her as a gift.
Tuesday, November 11, 2008
Sorry for the long delay in posting. Erica was released from the hospital on Sunday afternoon and went home to her Mom's place. Last week Erica received a low-dose chemotherapy and another treatment in an attempt to keep her counts in check, meaning keeping the leukemia from rapidly reproducing. These two treatments called Vidaza and Mylotarg were chosen by Erica and her family because they had the best chance of prolonging her life without making her horribly sick, and so far, it seems to be working. Right now her main complaint is oppressive fatigue which could be a result of few different things. The plan is to be checked at Stanford 3 times a week and monitor her counts.
She asked that I send her thanks for all of the displays of love and support. The cards, the gifts, the blog postings, the e-mails, and all the wonderful meals made her time in the hospital a little more bearable.
P.S. Good news, Erica is the proud owner of a new iPhone (same phone number)! For those of you who she is in touch with, please text her your phone numbers (don't forget to include your name).
Thursday, October 30, 2008
And it gets worse. The docs have offered her two choices: (1) another round of chemotherapy if she would like to try but aren’t very hopeful that it will work. As always, the numbers aren’t in her favor: less than 10% chance it will work and greater than 90% chance it will mean that she dies in the hospital due to complications and/or infections.
(2) Her other option is to leave Stanford and go home. Home to wait, to figure things out, to try and deal with what lies ahead. One doctor said that she may have 3-4 weeks… another speculates it could be months… we understand that it is really the progression of the disease and we are at its mercy.
Needless to say, she is numb and sad. Please keep her in your thoughts and prayers and respect her desire for privacy at this horribly difficult time.
All our love,
Judy, Jaci, & Jamie
Tuesday, October 28, 2008
For those of you who thought to yourselves after reading Erica's blog from last night "Hmmmm, I wonder if Erica was on mass amounts of morphine when she wrote that blog?" The answer is YES! Her comment to me was "I am going to write a quick blog saying that I lost my iPhone," and the blog below is what she came up with. I would just like to point out that this blog was written after a long, hard day filled with serious pain and numerous tests. Will fill you in about that later. For now she is in very good spirits and taking it easy.
Your loyal blog editor,
BY Erik Hurray
Palo Alto, CA. According to initial reports just leaked from unnamed sources within Stanford University Medical Center, an iPhone known as EJ's Mobile has gone missing. It was last seen Thursday, October 23 by private citizen Jamie Murphy, in the hands of a young medium-built female trying to pass off as a civilian. She wore street clothes but her Medusa-like tangles of intravenous tubage clearly signaled in-patient status. Her mendacity at not wearing the traditional patient gown immediately made your correspondent raise his eyebrows.
The mysterious woman, too bald to own the alias Medusa has been dubbed "Twilight" after the runaway vampire book series and because of the red streak of crimson at her mouth (which she claims is from Jill's spaghetti that night, but your correspondent remains unconvinced). Murphy says that she noticed Twilight had to be moved FIVE times around the F, E, and D units and nurses confirm that finding staff that were willing to draw blood 3-4 times per day from Twilight, whose translucent skin seemed to glow in a spooky way that allowed easy access to good viens but whose icy temperatures forced phlebotemists to wear multiple pairs of latex gloves when examining the alleged patient. Before we could conduct further questioning, Twilight seems to have vanished, leaving neither a drop in her hemoglobin transfusion bag nor any clue as to where she's headed. (Her insurance, HMJPG Hockey Mom & Joe the Plumber Group, is apparently a total fraud and covers no one, so finding the likely culprit through a paper trail has dead ended.)
The search for the missing iPhone has been conducted in a professional and thorough manner. Amber alerts have been issued on the 101 and 280 freeways. Digital Voicemail-sniffing dogs scoured the patient units, the 3rd floor VIP room, the cafeteria, and the radiology ward, places EJ's Mobile's owner has frequented lately. As each hour passes, the owner has less hope that the mobile device will be found intact. "I have had it for about a year and half," the owner, who wishes to remain anonymous, said. "I'm not sure how I will be able to fill the hole its absence has left in my purse."
iTunes stores have offered songs for $0.89 for anyone with any information about the whereabouts of Twilight or EJ's Mobile. Please study the artist's rendition of the missing machine pictured here. Now immediately going to voice mail, experts agree that its battery has long ago burnt out. Still, EJ's Mobile's owner remains hopeful and the search goes on for Santa Clara County's #1 vampire fugitive.
If you have any information, any information at all, please call Room FG30 at (650) 498-3067 instead of EJ's Mobile.
Sunday, October 26, 2008
Stanford Hospital & Clinics
Attn: Erica Murray- F Ground 30
300 Pasteur Drive
Stanford, CA 94305
Thursday, October 23, 2008
Erica finished a 5-day course of chemotherapy on Sunday night. We won't know for another 15-20 days whether or not this chemo worked. In the meantime we do as we have done before, try to keep her infection free, and so far, it isn't going so well. Since she is neutropenic (meaning she has no immune system) she has developed a fever and infection and the doctors are currently trying to get a handle on it and figure out how to treat it. In addition to this new infection, she is starting to feel the other effects of the chemo: weakness, nausea, soreness, and just all around crappy.
A note to visitors: please, please, please do not come by unless you are 100% healthy and have not been around anyone who has been ill recently. Also, please make sure to schedule a visit, don't just show up. We need to make sure we don't have too many visitors in the room at once. As Erica is currently fighting this still unknown infection, it is probably best to hold off on visiting for now until we know what is going on.
One other small update, Erica's room number has changed. She is now in room D41. The full address is below.
Stanford Hospital and Clinics
Attn: Erica Murray, D Ground 41
300 Pasteur Drive
Stanford, CA 94305
Friday, October 17, 2008
Yes, the look of complete shock on Erica's face was well worth the hassle of booking an impromptu flight for the following morning. Andres and I showed up at Stanford Hospital yesterday while Erica, Mom, and Jamie were enjoying lunch outside. Erica's whole face froze, Mom started crying, and Jamie screamed--twice. It was so perfect!!
We spent the afternoon catching up, but even yesterday, Erica began to show signs of treatment effects. She was tired and needed to nap for two hours to make it through the day. By 9:30pm, the nurse came in to administer the third bout of chemotherapy. This involves giving one chemo, waiting three hours, and then giving another. Overall, it starts at 9:30pm and ends around 4am. Can anyone guess why she's tired???
Today, Erica needed a CT for a persistant cough and a bag of platelets, too. Otherwise, the only treatment she received thus far has been at night. As the days progress, she will need other infusions and medications to manage the side effects from the chemotherapy.
Personally, it's lovely to see her... she is positive, laughing, and surrounded by lots of support and love. She is still able to check email occassionally and we read blog posts to her, so she knows all the kind comments that are left here.
I think it's important to mention that Erica has told us that she values time alone. In past hospital admissions, she wanted people to be around her all the time--and I'm talking about as many as can fit in the room! But this time around, she seems content and pleased for moments of introspection and restful quietude... Don't get me wrong: she still loves visitors! But please be aware for those living locally, to perhaps keep visits shorter than has been in the past. And for out of town visitors, please don't expect to sit in the room all day and night as we used to. That said, feel free to still coordinate visits, but know that you need to take long breaks away...
All in all, she's still fighting, brave, and humble. She doesn't ask for anything and she's more concerned with our well-being and state of mind. She has spent some restful time painting, reading, and journaling. She even still lets me climb into bed and spoon with her...
Tuesday, October 14, 2008
Sorry I didn't post last night. There was nothing new to report. Erica spent most of the day yesterday just waiting around for answers and nothing ever came. Today has brought a few more answers but there are still some uncertainties. Erica's team of docs came in around 9:00 this morning and told us that her preliminary lab results are showing that she relapsed with leukemia, but not precisely which type. The short-term plan is to treat her with chemo in an attempt to get her into remission. If remission is achieved, her docs will have to figure out what her best option is afterwards. It is not as simple as doing another transplant, which at this point does not seem to be an option. There is talk about clinical trials or mini-transplants but nothing has been decided on for now.
Erica will most likely begin chemo tomorrow. She will be given a course of chemo that will last anywhere between 4 to 7 days. After that, the waiting game begins for her counts to drop and then to recover. Unlike the last 2 times that Erica has gone through this process, she now has the added obstacle of fighting graft versus host disease caused by the bone marrow transplant. Erica will most likely get very sick over the next couple weeks and will need your love and support more than ever. This next month will be incredibly challenging for her so I beg of you to send all of your love, energy, and courage her way. Below is her mailing address here at Stanford, she would love to hear from you.
Stanford Hospital and Clinics
Attn: Erica Murray, E124
300 Pasteur Drive
Stanford, CA 94305
Sunday, October 12, 2008
Friday, October 10, 2008
Wednesday, October 08, 2008
And the announcement of our working titles:
... drum roll please...
After receiving survey responses from 63 people (thank you, by the way!) and after careful consideration by the production crew, we decided to adopt two working titles, one for the 10-minute "short" (used for applying for grants and for submission to certain festivals/contests) and one for the full-length documentary.
The title of the short will be: You've Got Cancer
The title of the documentary will be: Bone Dry: A Journey Fighting Leukemia
Keep in mind these are working titles and could change/evolve. But for now, project Bone Dry forges onward!
Thank you to everyone who has donated their time, money, and creativity to this project so far. If you want to learn more about it, you can visit http://globalnarratives.org/documentary.html. By the way, we are in the process of acquiring fiscal sponsorship which will render your future donations tax deductible!
Tuesday, September 30, 2008
I still have strange bumps on the roof of my mouth that usually appear while I eat. They are often painful and irritable. They vary in size and hardness but are filled with what seems like salt water. (?)
So, I was sent to the Ear, Nose & Throat doctor. He, like everyone else, was mystified. If you look carefully at this shot, you can actually see the little opaque bumps up there.
There's the hole.
It healed very quickly and with minimal pain. Unfortunately, the results came back revealing... nothing. It ruled out some specific things (such as GVHD), but did not identify any other causal specifics.
So, he had me come back and do it all again- that time with two bigger punches. Again, the results revealed nothing. He suggested taking yet a bigger piece of my hard palate, this time under full sedation and possibly using a graft of skin from behind my ear if we inadvertently expose the bone (!), but...
My BMT doc seems content to call it GVHD and I suppose I agree. There are countless ways a body can give the finger to its invading graft cells and one of mine is my mouth bumps. My doctor and I hope that it'll just go away when it's ready, but I hope in the meantime to stop the futile steroids that simply are not the right anecdote.
I'm pretty sure all of this is just balancing out for the fact that I've never had any dental work done ever- not even a cavity filled. I now understand the terror trips to see the dentist can elicit in people!
Friday, September 26, 2008
At my last clinic visit with Dr. Miklos, I learned that I will not be able to fly until well after the time the "book" mentions as safe (six months post transplant- November) because I have had to be on all of these immuno-suppressants. These drugs take a long time to taper to avoid other complications. So, should I begin successfully lowering my steroid doses imminently, as we have planned since they're not seeming to do squat for my GVHD symptoms, I won't be in a safe zone until perhaps mid-Spring 2009. My doc (pictured here) is convinced that being in a chamber of recycled air with 350 strangers for several hours is a prescription for infection and while I am 110% behind him on being conservative, my wanderlusting personality plus the fact that my friends and family live all over make me crave distances only accomplished by air. It's OK though, these people and places will still be there in May, June, the rest of my life.
Secondly, I was saddened to confirm with him that I will not be able to go on hormone replacement therapy until at least a year post-transplant. Estrogen messes with your liver and during this time liver concerns are paramount. We don't want anything altering their ability to test how my liver is reacting to its new system. Why am I sad? Well, due to the radiation and chemotherapy, my body has basically undergone premature menopause. My body is supposed to produce hormones for around another twenty years, so basically I'm going to crumble into a crypt person by age 31 if I don't do something about it! Ok, so maybe not a crypt person, but here are some things that HRT could help:
- I'm already osteopereunic. HRT helps prevent osteoperosis (bone loss).
- heart disease
- high blood pressure
- vagigi dryness
- eye dryness -- i'll come to my eyes in a second
- short-term memory loss
- hair thinning
- increased facial hair- always sexy
- slowing metabolism
- high cholesterol (having this checked in a couple weeks; not sure if its an issue yet)
What else? Since the mouth sores haven't improved, we are experimenting by incorporating ANOTHER drug into my regimen. (I would say that the mouth bumps have not changed much quantitatively, but perhaps qualitatively, as I've grown used to living with them.) I love my doctor for many reasons, but one of them is that I know his brain runs on high-octane super fuel and he's always evaluating my condition based on a million different scenarios/drugs/causes that he personally knows and probably has researched personally and probably won some award for.
Anyway, he often forgets that we are mere humans and torrents of technical medical jargon come spewing from him as he orally postulates what next to do with this strange girl with disobedient mouth sores. It was interesting to hear all of my options for drugs, their various pros and cons and also to realize that their operational platform relies on defining the type of GVHD I have and they can no more easily do that than presecribe a cure. Because mouth sores often afflict people more than 100 days post-transplant, there's a tendancy to call what I have new-onset chronic GVHD. But, since I presented with this well before 100-days, they are examining if I am now in fact dependant on the steroids; in other words, the bumps and the steroid level are at some kind of equilibrium whereby decreasing the drugs will increase the problem. This is called steroid-refractory CGVHD. Anyhoo, he settled on a mycophenolic acid immuno-suppressant. My pill box is bursting and I may have to upgrade, but at least this might signal the beginning of prednisone (steroid) tapering.
Lastly, I also went to see the opthamologist. I have had blurry vision and trouble reading both up close and at a distance since I was in the hospital. Some told me that it was another gift from my good friend, steroids, and would go away when he went away. However, Dr. Ta had a different tale to tell. After I began to think he was just using my eyes as a palet for mixing various colored drops for painting, and then messing with me using lazer pointed lights and torture-chamber-looking facial attachments, he announced in a cheerful voice:
You've got retinal hemoraghing. Yeah, so I'll refer you to a retinal specialist.
You've got cataracts in both eyes. No, they can't get better. Yes, they'll get worse as long as you're on steroids. Implant surgery is basically an inevitability. No, you're fully awake during it, but it's an outpatient surgery and very common. Nothing to worry about!
Oh, and your eyes are really dry. So, we can't rule out that you don't have graft-versus-host-disease in your eyes.
Have a great day!
SUMMARY: Big issues- fine. Little issues- dealing. And I finally get to get glasses like I've wanted for decades. If it acts like a nerd, smells like a nerd, and talks like a nerd, it should look like one too. Right?
Friday, September 19, 2008
When I moved here, I knew that Cathy had been battling breast cancer, but she was beating it. This photo was taken a few months ago- her hair at somewhat the same stage mine is at right now. Unfortunately, the cancer spread from her breast to her lungs and further to her lymph nodes. In recent months, she developed tumors on her head, outside her skull. Still, everything seemed treatable. There was radiation and chemotherapy planned. She was hopeful. I had just set up her new laptop and she was SO excited to start using it. She was planning on going on a New England fall foliage adventure this month.
I went away for a few days last week and when I came back, Cathy had done a 180. She was completely doped up on morphine, a hospice nurse was coming daily, and her friends and family were preparing for the end. I was shocked. Then, I was hopeful again. I mean, so she's on a lot of drugs to help with the pain? I was on so many drugs that I have about a 2-week memory blank from May, but I came back. Cathy will be no different.
I was naive. Cathy died this afternoon. My Mom and I came back from my own sobering doctor's appointment to see two men in suits walking down the hall from her apartment. My Mom stopped dead in her tracks and I, even having watching every season of Six Feet Under, didn't understand who those men were until Harmony came out of the door and told us that Cathy had passed away at 3:00 that afternoon and those men, of course, were there to take her body away.
I'd never seen a dead body before, but it wasn't scary or disturbing. I was glad to get to see her one more time before they took her, to stroke her blanched hands and kiss her temple. The loss of Cathy in our lives is going to be huge. She was an extremely special person, as kind as anyone I've ever known, so grateful for the tiniest of pleasures, for the tiniest of blessings. Her last name is Reveler and boy, did she revel. She loved being around my friends and somehow remembered everyone's name and details. I know that those of you who've met her can testify to this. I am a little bit in shock still, I think, but take comfort in the beauty of who she was, in my luck in getting to know her, and that she is no longer in pain.
This has been a cancer-saturated day.
First, I had to go to the nail salon because there is a woman there who is (in my experience) an expert in dealing with chemotherapy-afflicted toenails. She is this way because her 2-year-old has brain cancer. She insists I come in and she cleans up my dying nails, preventing and healing in-growns, and releasing the hardened dead nails from the new healthy ones- all without pain to me. And she will not take any money from me for this. We always talk about Katie, her baby daughter. She's currently at UCSF getting radiation.
Then, I played tennis with my friend Bess and found out that this little angel, Sophia, who I had met at Easter this year, had died from leukemia this week. She was diagnosed when she was two and died this week at age 7. She was one of the most beautiful children I'd ever met: bright green eyes, curly dark hair, and a shy sweet smile that called for love at first sight. I'm not sure if she was ever eligible for a bone marrow transplant, but, being a mix of african-american and white, her mother had told me that they'd had difficulty finding a match. Bess said her funeral was made into a celebration, with tons of children in attendance and everyone encouraged to wear bright colors and be grateful for sweet Sophia's LIFE.
Then, I went to my own clinic appointment, which I will write more about later. It seems like these souls deserve, at minimum, all the attention of a post. Cancer. Sometimes it feels like more than we can fight.
Tuesday, September 09, 2008
This is not supposed to be a political blog, so I didn't want to extend the Palin vitriol any further here. However, this piece was so resonant and thought-provoking to me that I had to share it.]
Original post: 9/9/08
When I and the nation learned of McCain's choice of running mate, I was a bit charmed by her shake-up-the-good-old-boy-establishment mission, her oratory skill, and well, the fact that she's a she.
In a matter of days though, I have grown to hate Sarah Palin. She's redundant, mendacious, and myopic. Not to mention she stands for 27 policies I disagree with. Her voice now sounds to me like screeching fingernails on a chalkboard and all I can think is: this shouting woman just got a passport last year!
If I could shout back at her, I'd say: Get off that pulpit and go home to cuddle your new baby with down syndrome and to teach your kids about birth control. Then take a few years to explore the thawed world: Brazilian favelas, Tokyo hostess clubs, Mongolian sunrises, Moroccan couscous. Then reassess what the hell you and your speech writers were thinking to mock the work of community organizers; take a moment to realize that a PTA volunteer and hockey mom is exactly that. That a politician is exactly that. Lastly I would tell her that her true calling, as anyone can see, is as a LensCrafters spokesperson and she ought to politely recuse herself from the VP race and hurry in for an audition.
This woman can take her hypocrisy and shove it where the sun don't shine.
(I'm meaning back to Alaska, you dirty mind.) Thanks, but no thanks.
Thursday, August 28, 2008
Other than knowing that for fact, I'm not exactly sure what I'm "going to do". I was entertaining the idea of heading back to Fletcher to finish off my masters in January, but I actually think that's too soon. Four months from now feels just a little soon to pack up and move to a wintry Boston. (Actually right now, as I sit in front of my neighbor's A/C unit like I'm auditioning for a Sierra Mist commercial, the snow sounds pretty awesome.) Other than postponing school, I'm not really sure what I'm going to do "now" or as my physical, mental, and psychological state comes back to a variant state of normal. Mostly, I think I'm trying to let things just flow, trying to subdue my innate anxiety about not planning and full-on pursuing "the next step", and just rest. As my doctor said today, I need to realize it's a long healing process.
[Note on today's Clinic Visit: Doc says the mouth looks a lot better, but symptoms continue in their unpredictable and inconsistent way, so up the steroids go. Some liver enzyme level is high enough to reinforce the decision to up my steroids again, since GVHD is frequently manifest in the liver. He said if my eyes get yellow, that's jaundice. Sounds gorgeous. Other than that, counts look good.]
Ok, so Question #2, which I feel only slightly better able to answer is: What do you DO all day long? I used to giggle and shrug, finding my daily schedule embarrassingly unproductive, mundane, and difficult to quantify or explain. But then, I really started to think about it and I realize that I'm up to some cool-ass shit! Check it out.
I'm co-producing a documentary. I'm writing a paper about Chinese media censorship. I keep in touch as best I can; you know how much time e-mail absorbs! I am, albeit slowly, starting to apply for gainful employment. I work to provide my counsel with whatever discovery information they request. I'm working on finding an agent with whom to possibly publish a book. I'm exercising every day, including yoga, aikido (well, I will start classes in a couple weeks- eek!), tai chi and walking. [My Bay Area posse: we keep talking about tennis! Let's go make silly fools of ourselves on the court sooooooon.] I cook a lot. I do big organization projects in our apartment. And, I manage my often-confusing schedule of health-related appointments and medications. Then, I also make myself relax and read or relax and watch Heroes or relax and watch CNN or relax and meditate.
This all takes time, people! Plus, is my 2000-piece puzzle going to put itself together?? hmm??
I have these To-Do-Lists that never seem to get done, but yet couldn't really explain what I do all day. It is very hodge-podge and I'm constantly distracted from one thing to another, but I rarely feel bored.
So, when next you wonder what this unemployed sick girl does with her days, now you know. And with this writing exercise, I finally do too.
Tuesday, August 19, 2008
"Just use your common sense". Those were the words my fabulous doctor told me in clinic last Friday. He meant this in regard to crowds, being around (even slightly possibly sick) people, air travel, parks-- all the no-no's. I love him for this advice. I've hated the seemingly arbitrary nature of the 100-day mark and the 6-month mark and the 1-year mark. I know it's an average of scientific research (though bone marrow transplants are still a very evolving and relatively "new" procedure) rounded way up to to a round number. I took some liberties with Day 100, enjoying the fresh air and eating out by Day 90 or so. I prefer to use common sense when I must balance life with treatment. It's empowering, logical, and the right prescription for my brand of endurance.
As this journey goes on, I'm content to be conservative about what I do. I've come to a kind of peace with the molasses; in fact, it tastes amazing to just let yourself take the time to heal at a gentle pace. I don't want to be the runner who has a vast lead all throughout the marathon and then gets a leg cramp at mile 25 and cannot even finish. Things are going as well as one could hope with a mismatch allogeneic transplant and I intent to keep it that way.
For instance, I canceled two semi-planned trips for November. Keeping me out of planes is tough with family on the east coast and lusting to visit foreign lands again soon. I was somehow asked to be on this panel for a symposium on women entrepreneurs in New York, but, even though I'd be technically 6 months and 5 days post transplant (and according to the books, you can fly after 6 months), I declined--- JUST IN CASE. The risks are just too high. Too many stories of patients who endure infections, frequent hospitalizations, and death, because they were coughed on by the wrong person. In that vein, I'm trying to be more vigilant about reminding people that if they're ill, please let me know (read: stay away).
I'm stronger than 100 days ago. I've watched my body heal and grow; it seems to take 3 steps forward and 1 step back, but it's moving toward that finish line. I'm down to only 22 pills to take each day. I have honed a super relationship with my roommate/Mom. I have started counseling for all the mental crap that my daily pills don't address (and perhaps exacerbate). Because we couldn't do much but hang out at my place, I've been endowed with countless hours of quality time with friends who visit. And I've discovered that there is a lot of non-raw sushi rolls out there-- bring on the shrimp tempura and spider rolls.
Hold the sashimi. For now.
Monday, August 04, 2008
"No evidence of disease".
In other words, no leukemia. No cancer. Gone.
This is worth a cheer. It's been interesting to me to watch people's reactions to this news. Across the board, people are jubilant, utterly giddy. I hear their (silent) sighs of relief that this is over, finally. It's fun being the bearer of good news.
A friend of mine has as her "Religious Views" on Facebook.com that she is "cautiously optimistic". I think that phrase would best characterize how I feel about the biopsy results. There are nine months until I'm one-year post-transplant, when I can actually contact my donor to thank her for saving my life. The reason for this one year delay is because risks are rife still and will continue to be for my entire life. In other words, it's not so cool if you find out the chick you donated marrow to kicked the bucket six months after she flew out to Warsaw to give you an appreciation hug. And the graft-versus-host-disease I have still mystifies my medical team as I suffer through their various drug attempts at remedy.
Of course, that whole "kick the bucket" thing is not going to happen for another, oh I'd say sixty years, but I have definitely become more than a little jaded about the concept of being "cancer free". The biggest fear is relapse. Who do you think has a better chance of developing leukemia (or a host of other fun cancers due to the treatments), me or any schmuck you pull off the street? Relapsing was more jarring to my sense of the world than original diagnosis. Coming home from yoga, planning my March 08 celebration of end of treatment, to find my sister on my bed in Boston with tears and news that my last biopsy... that memory resonates all too clearly and frequently. I have learned you cannot assume anything.
And, plus, who among us is "cancer free"? Who hasn't worried about standing too close to the microwave or wondered if it's true that anti-perspirant causes breast cancer? Who doesn't know someone who's died of the disease? We all face it every day, in our own ways.
So, yes, the biopsy results confirmed what other indications had suggested- no trace of leukemia. I remain cautiously optimistic. It's the best that I can do.
Saturday, July 26, 2008
Steroids are deadly. They can make you soar to unbelievable heights or dive into a dismal abyss. Because of Erica’s mouth sores that surface and play havoc with her whenever she attempts to eat plus other evidence such as a body rash, her doctors think its chronic GVHD. Hoping to eliminate or at least control the mouth sores to a certain degree, she was put onto prednisone steroids.
At the beginning, she was on a low doze, then they upped it to 100mg per day. For the past week, she has been feeling pretty lousy, being constantly fatigued, either sleeping constantly or not sleeping through the night at all. Not to mention that it’s playing havoc with her emotions to the extreme. She is irritable, forgetful and generally sad. However being the driving person that she is, she still tries to maintain somewhat of a schedule to keep her sanity.
Thank goodness Jonathan was here for a couple of days to balance things a bit. Gioia arrived from
However, the light is shining bright at the end of the tunnel. The 100-day mark is looming up ahead on
Monday she will undergo her first bone marrow biopsy since the transplant and we will know for sure where exactly she stands. This is such a terribly painful procedure for any patient to have to endure without conscious sedation. Then on Friday, she will have her first clinic visit with her BMT doctor to find out the result of the biopsy as well as to access her future treatment.
Meantime, we have to congratulate her for being so patient, so enduring and so strong despite it all. We truly have to admire her spirit and courage. The past 2 ½ years have surely not been easy for her. She has come a long way since her first diagnosis.
Love you tons, sweetheart.
Friday, July 25, 2008
On August 3rd, I will face the biggest physical challenge of my life: running the San Francisco Marathon! The training has been both grueling & exhilarating, with each Saturday long run a new achievement in distance for me. Before I started training 3 months ago, I had never run over 8 miles before, and the distance of 26.2 miles is more than 3x that amount. During my recent 21-mile run, I truly needed to muster up every bit of strength to just keep moving.
Through this marathon, I am running to raise funds for a documentary that I am Directing and Co-Producing with and about a young woman named Erica Murray. Erica has been facing even larger hurdles in her life with determination, strength and a great sense of humor. Yes, Erica has already run a marathon. But what she's facing is an arduous path much longer than 4 or 5 hours. Erica is living with leukemia, and for the past 2.5 years has persisted through indescribable lengthy and painful treatments of chemo and radiation. She's 29, similar to me, and this roadblock in her life is simply unfair. Just weeks ago, Erica received a necessary bone marrow transplant for her life. As a bi-racial individual, the search for the right donor was a difficult process, because very few minorities and mixed-race people have registered to donate their bone marrow stem cells.
Through the story of Erica's journey with leukemia, our documentary crew aims to bring awareness to the desperate need for bone marrow stem cell donations for leukemia patients, and specifically to compel people of mixed race and minority descent, to register to donate their bone marrow stem cells. This is now a VERY easy process that can save the life of someone with leukemia. My own grandmother died of leukemia, and my family personally understands this devastating disease.
So far, we have filmed 17 hours before, during and after Erica's big transplant, all with volunteer hours and personal funding. In order to continue with this documentary, we need financial support. Any amount will go a long ways during this initial stage! My goal is to raise $2000. 100% of the money will go towards the making of this documentary. Please help me achieve that goal by making a donation through this site:
If you can't make a financial donation, please consider registering to donate your bone marrow stems cells. It's now a much less painful process that can and will save someone's life! Also, an alternate way to donate is through a procedure that looks just like donating blood!
INFO on Donating:
Thank you very much for considering a donation to Global Narratives towards the Erica Murray documentary project!
Friday, July 18, 2008
As if the high drama of a wedding joining these two isn't enough, I have to say a word or two about Uma. When we met on the first day of freshman year as undergraduate roommates, my dear friend not only had not had a boyfriend prior but she honestly figured that love was not to be a facet of her life. We both spouted feminist theory from our bunk bed roosts, disparaged the archaic bonds of marriage, and all but vowed never to engage in such a misogynistic illogical incarceration. However, this was a woman who loved her Jane Austen, who had a weakness for the naughty and unlikely heroine finding a true love. This was private Uma and now we all know- the real Uma. This girl wouldn't take the easy route, wouldn't let any suitor into her heart without complete honesty and purity of intention. And that's why I'm so glad that she is now married to Mr. John Ballinger, better than a Darcy, a Bingley, or a Brandon.
Something like this would have been a part of the toast I was asked to give, but I was advised by my medical team that I'm just not ready to be in the company of so many people quite yet. My disappointment is huge, but I find solace in hoping that smart moves like that will allow me to be present when Uma pops out baby Umita or Little John. [Hee hee, Uma! We still gotta work out your "kid issues" before you can stop rolling your eyes at the mention of the little tykes. Ahh, come on, human mutts are fun!]
If you were there, please flood me with pictures. You can get my e-mail address from Uma or John.
Wednesday, July 09, 2008
Vinay. The unfairness of his illness and early death renders indescribable emotion throughout my body- my stomach cramps, my chest feels hallow, and my skin feels prickly and foreign. Basically, as you know, when I first read that he had died, I... well, I lost my shit. I just cried and cried and cried. And, as I sniveled and heaved, I knew there was something off about my sorrow. I recognized that I had not cried like that when my grandmother died last November. I realized that I hadn't cried like that in perhaps more than a year, perhaps since the really hard physical times in 2006.
I called my sister and she patiently listened to me sob and when I declared, "This is NOT about me", she didn't argue. But it was. Of course it is.
I'm no psychologist, but I know that I've got issues. Everyone does, but the ones I have about my illness seem to be so carefully buried that I can pretend they don't exist. There is no room to complain, to feel sorry for oneself, to wail about your predicament-- there are simply way too many other people who have it worse. Plus, while cathartic, being negative is not an enjoyable way to live. It's so much easier to let my denial mechanisms insulate me from how much cancer fucking sucks. How unfair it is. How disruptive and painful it is. How fracking scary it is.
So, I hereby declare that I will find a counselor. So many of my friends swear by their amazing counselors. Hmmm... why then does my stomach seize up at the prospect?
Wednesday, July 02, 2008
Omg. The first link I wanted to post was to a young man named Vinay, who was a patient at Dana Farber in Boston, just like me, and has worked tirelessly to augment the bone marrow donor list. He too relapsed with leukemia at the beginning of this year and had a mismatched bone marrow transplant. His site gets countless hits per day and he has been featured in various media, including a documentary entitled "The Truth About Cancer" on PBS. When his page, www.helpvinay.org, opened, it said that he died on June 25.
I am lost. Devastated.
I'll finish this later.
Sunday, June 22, 2008
Inhale. Exhale. Inhale. Exhale. I have started meditating. Some blog I read suggested that you commit to daily meditation for 21 days before you decide if it's right for you. This morning's lotus-seated enterprise marks Day Numero Uno for me. I used a CD with a smooth male voice frequently reminding me to think about nothing except my breathing. Inhale. Exhale. I found the experience relaxing, but my mind invariably strayed to other things besides, as Mr. Smooth Meditation suggests, the feeling of air on the tip of my nose going in and out (couldn't discern that one all) or the rise and fall of my chest.
I've heard so many good things about meditation, from its ability to create space in our bodies to make room for healing to moving your mind away from physical pain (or itches) to simply adding a certain calm to the practitioner, whereby each challenge that comes their way seems a little more manageable. I'm down with these. Sign me up.
OK, my friends, family, and I have been blogging here for over two years. All we do is give, give, give to you readers. Now, it's time for a little homework assignment for YOU. =)
What I would love for this post is to hear from anyone and everyone out there in this crazy cyber community who reads this to comment on the following questions:
- Do you meditate?
- When and how often?
- Do you use any tools, such as music, a guiding voice, a specific visual item to focus on?
- Why do you do it and has it changed your life in any way?
Sunday, June 15, 2008
Better than a birthday... is realizing that I am half-way to my 90-DAY-MARK. Around 90-100 days post-transplant, I get another bone marrow biopsy to confirm conclusively that my body is 100% my donor's cells and that there is no cancer. From my counts and light graft-versus-host-disease, they are all but sure of these things now.
Why on earth would I be excited about a fully-conscious bone-drilling procedure? Well, the prizes earned at that time will revolutionize my existence.
My "Hickman" catheter line will be removed from my chest. I can only assume that means less visits to the hospital in general since they can't prick my veins twice per week before they collapse again. It will mean much greater ease in bathing, less home maintenance of the port itself, and one less unsightly piece of sickness evidence.
A few days ago, my friend Abby gave me this wind-up nigiri. It rolls and spins and represents the fact that in another 40 days, I can eat whatever I want! Taking care to be sensible about crowds and dirty restaurants (is it only Southern California restaurants that has those genius A, B, C postings in the windows to tell customers their health inspection status?), I will be able to enjoy the JOY of relaxing at cafes, the CONVENIENCE of restaurant dining, and the belated PLEASURE of exploring my new area's eats.
But, how can I eat if I have the pink Darth Vader mask on? Glad you asked, because that will be the greatest of the three lessened restrictions. Currently, I don't go outside. Yeah, I really didn't expect that I'd opt to be such the recluse, but I only leave to go the hospital twice a week. I hate wearing my mask THAT much. It is hot and cumbersome, muffles attempts at speaking, lessens my air intake, and provokes visible discomfort in people I encounter. With the exception of medical facilities (isn't it so ironic how dirty hospitals are?), I have about 40 more days of this barrier between me and fresh air.
The other great part about that is we'll be able to OPEN OUR WINDOWS in our apartment. While outside hosts temperatures in the 70s, our oven climbs 15 degrees higher due to a greenhouse incubation effect. When my skin is rashy and itching (most of the time these days), this heat is intolerable. So, big YAY for no more mask in 40 days!
Thursday, June 05, 2008
To be on hand to celebrate this auspicious occasion, Jamie flew in from LA yesterday and Jaci from
Monday, June 02, 2008
They still weren't too worried about my rashy arms, claiming that the kind of rash it was (bumpy, itchy) was not characteristic of GVH. And the itching was more likely a fun side effect of one of the medications I'm taking than of GVH either. (which med? how could we ever know?) But my red toes and aching feet, in combination with the above, plus a not-perfect GI tract, led to the diagnosis of mild GVH, the disease I had felt trained to fear and do everything in my power to avoid.
What's this now? "A little GVH is a good thing"? Apparently, although it is indicative that my graft or donor cells are attacking my own body mistaking the natives for invaders themselves, it proves that my graft is active, kicking butt and taking names. I imagine a little cowboys and Indians battle going on in my pelvic bone (where I visualize my marrow cells hanging out most often though their offspring are actually coursing through my entire bloodstream). The graft cells are of course the westward moving cowboys walking with bowlegged machismo, attacking peaceful Indian campsites just to prove their virility and claim their new frontier. Leave my Indians alone, dumb cowboys! Can't we all just get along?
This is, of course, an inane metaphor because "a little GVH is a good thing". A little Trail of Tears- not such a good thing.
Another good thing is that the four additional medications given to me to deal with these symptoms have succeeded in virtually eradicating all my previous discomfort. I feel very good in body and spirit.