Day +88

Day +88

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 Switzerland via London last night and the girls, with Katie are off on a one day jaunt today to Carmel. Erica is so looking forward to getting away, albeit for only one night. She is sure antsy but you can’t really blame this foot-loose gal as she has been cooped up for the last 6 months.

However, the light is shining bright at the end of the tunnel. The 100-day mark is looming up ahead on 8/8/08, very auspicious in the Chinese calendar. 8 is always a very lucky number (as is today being Day +88 post transplant) and, for Erica, that date begins another chapter in her ongoing saga of her illness. All things considered, she is recuperating extremely well and despite all the discomforts her mouth sores bring, overall she has weathered the transplant very well.

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.

Mama-san

A Hilly Marathon Challenge!

Dear Family and Friends,

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:

http://www.globalnarratives.org/donate.html

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:
www.marrow.org

Thank you very much for considering a donation to Global Narratives towards the Erica Murray documentary project!

Thank you,

Naomi Ture
Co-Producer/Director

Erica Murray
Co-Producer

Missed Marriage

Four days ago, Uma and John became wife and husband. It was an occasion long-sought for so many reasons, not least of which revolved around the journey they have traveled together since an aneurysm burst in Uma's brain in January of 2007. They had become engaged the Christmas Day prior. Since the aneurysm, Uma has gone from a deep coma to a woman ironing out the wrinkles left by the aphasia (inability to speak) and paralysis. And from years before and through these often horrific 18 months since, John has been Uma's partner, her care-giver, her advocate, her lover, her cheerleader, her confidant, accepting her in all her evolving forms and potential.

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.

Mazel Tof!

Part II

Sorry for taking so long on that "to be continued". I recently was watching the "Sex and the City" movie, which my cousin was awesome enough to find online and burn for me, but it was burned on two disks. After all the drama and upheaval of the first half, the second disk wouldn't play! So, I know how you feel.

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?

Cover Girl

Occidental College graduates who read this have already seen this way-close photograph of me on this quarter's Occidental Magazine. It has been a surreal experience to be featured in such a way. It's not People or the New York Times, but for me, it's enough to leave me rather embarrassed, way nervous, and feeling wholly undeserving. Thank goodness for the writing and editing skills of the mag's staff, but I confess that I, of all people, am mystified by their feature story choice. The alumni magazine is supposed to be about people who are out there in the world, kicking ass and taking names. I am currently kicking ass at playing games. I guess my main concern is for all the alumni out there who are fighting deadly illnesses of their own who say, "what's so special about that chick?" The article does its best to answer that question, but, in my ever-expanding exposure to other people with illnesses, particularly leukemia, there's nothing we can do but fight. We have to advocate for the National Marrow Donor Program- our lives depend on it. Plus, an strong empathy for others looking for stem cell matches (I would assume) is unpreventable. Here are some of my favorite cancer rock stars out there:

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.