Monday, May 22, 2006

Lance Armstrong

So, Lance took one look at me and proposed on the spot. Since then, we've eloped, my hair and his testicle have grown back, and we're honeymooning in Biarritz. If anyone needs to reach us.

Sigh. Actually, no, I'm sorry to say, that's not how it went, but it was extremely cool to meet Mr LiveStrong himself and to hear him speak at the Tufts University graduation. Special thanks to Marcin for pulling whatever strings he did to get us tickets to the brunch with Lance. He is incredibly down to earth, passionate about what he does, and is solidly cuter in person.

I've been musing a lot about appearances lately because I don't recognize myself in the mirror anymore. It's the strangest sensation. I haven't been this pale since the womb, I can count the number of tenacious eyelashes on each eye, and I have this new spattering of big dark freckles courtesy of the radiation treatment. Add in the scrawniness and baldness and you start to believe me.

Last weekend, in addition to the Fletcher graduation, I had the privilege of attending a Lobster and Clam Bake party- very New England and very fun for those not from these parts- and of course, everyone's got their digital cameras flashing. With the instant satisfaction of checking out your pictures, came, for me, the shock every time of what I look like. I guess people around me are used to my ghastliness but every time I see a snapshot or pass a mirror, I am surprised anew. I'm not really complaining; par for the course I suppose and everything will come back to normal someday they say. People have it way worse than me. The interesting part is just that, how many people's faces really change look and dimension within their lifetime (besides aging and besides that woman in France who just had that face transplant)? How many people get to experience looking completely different for a while? Brushing my teeth and staring into a stranger's face is just one more thing my brain definitely still hasn't quite processed.

Thursday, May 18, 2006

LA Relay

Some of us LA folks (Jonathan, Ted, Katy Lim, Marie, Erik, Anai, etc.) are participating in theRelay for Life this Saturday (May 20th) in honor of you, Erica Murray.
Maybe some other LA folks (who don't know about it) would either like to come down and participate or make a donation. (see link above) Love to you both.Ums

Where: Newport Harbor High School

600 Irvine Ave

Newport Beach, CA 92663

When: May 20th @ 10am - May 21st @ 10am (that's right...24 hours)

Wednesday, May 17, 2006

May 17, 2006

Thank you to the many people who have said they will donate!
Click on this to get started,
On the map, click on your state to find a center near you. Seriously, click on the link. Do it. Do it now.
One other update: unfortunately, since Erica is still not feeling well enough to travel, she won't be going to Pasadena for the Oxy reunion... but believe me that she wishes she could and encourages others to still go & send many pictures! Once we handle a few day trips around New England, we'll give cross-country vacations a try... :)

Sunday, May 14, 2006

May 14, 2006

Happy Mother's Day :)
Since Erica is going through Week II, a week we dread, I am going to blog tonight... In Week I, she is on steroids in conjunction with many different chemotherapies. So, now she is no longer on those steroids that gave her a false security of a confident 'high' where her body was finally behaving a bit more than normal. Basically, she is plagued with muscle pain in her legs, chest pain as though something heavy is pressing down on her, hot flashes, and now sore mouth and throat to boot... She has told me a couple of times while looking at herself who now barely breaks 100 lbs. on a good day, "this is not my body." perhaps she's right---but everyone who has been in contact with her knows that it is still her spirit. Strong and willful. She has suckered me into doing yoga and tai chi with/for her since she cannot. And anyone who's been in contact with me knows that is an absurd picture!
So I chose to use this blog as a forum for answering some reoccurring questions; please forgive me the nonpersonal response. If there are more questions, let me know and I'll keep you posted as best I can...
1. Is Erica doing anything to help with the depressed feelings mentioned in the previous blog post?
Yes! I have to say that she is open-minded to every suggestion thrown her way. First, through Dana Farber, she has been receiving acupuncture twice a week. It is pretty amazing to watch and even more amazing to see her perk up afterward. I'm not sure if it is a coincidence or if it's proof that 3,000 years of Chinese medicine is legit! I believe the latter and therefore I am eager to see if the next few weeks of acupuncture will help relieve the nausea, lack of energy, and mood---as it claims in studies to do. I wonder if I can take a picture of the needles in her without destroying her qi... hmmm, it's pretty cool to see!
Here are some other mood busters she has tried: reading, me reading to her, books on tape, movies (although we are trying to lean away from the TV but having newly subscribed to Netflix makes that tough), prayer & spiritual avenues, FRIENDS, crossword puzzles (we still have yet to jump on the Sudoku bandwagon...), The Economist, eating foods that are high in anti-oxidents, sucking on ginger, theorizing a way to get to California, opening care packages and letters, etc etc... Many people suggested art as an outlet which is a great idea, but difficult for her right now since she has little sensation in her fingertips thereby making it hard to write, draw, or paint. But I will say that she is receptive to all ideas and is willing to try anything to make her feel at all better...
2. Any word on her bone marrow donor situation?
Kind of... our mom is on a quest to have as many people who are of Chinese/English/Scotish decent tested. She is utilizing connections in China, London, and all across the states to have drives set up for people to get tested. It is easier than I originally believed: oral swabs. No needles at all to get tested!! I'm going to lay it on thick, ready? Someone in this world, by the law of probability, matches my sister. But this person has yet to be tested... I am asking YOU to go with whoever you can take with you to get tested. True, you may not match Erica, but you may match another person who needs something from you that you will never miss. It is beyond simple and it saves lives. I don't know how to simplify it more----take an afternoon off work & go. Better yet, recruit your coworkers to go with you! I know there are people that check this blog daily and I love that---but have you been tested yet? For all the people who are asking what they can do to make her feel better, get tested! She was THRILLED to find that Leslie, Kellie, and Jenny Edwards were not only getting tested themselves, but bringing friends with them! It is so important...
So if you haven't deduced yet, Erica does not have a match. This means that she will continue with the two year protcol plan. If a match should be made within this time, the pros and cons will be weighed based on how good a match it is... For now, they are still searching.
3. What does she want for her birthday?
Please reference answer for question 2.
4. Is she really going to LA for Oxy's reunion?
We are going to talk to the doctors tomorrow to make sure it is okay to fly first and foremost. Then we will look into flights and monitor her energy levels... Currently going upstairs is a chore, so LA may be a stretch. But the idea of seeing all her friends is quite motivating!! Plus I could really use some sun---this Massachusetts rain is never ending!
5. How do I get an 'Erica Courage' bracelet?
They will be reordered since Katie and Gioia SOLD OUT! :) We never would have thought it would be so successful... it's so neat! I have heard people tell me it is a great way to (a) talk about Erica, and (b) educate people on the prevelence of leukemia. something about birds and a stone...?

Well, here's the skinny: Erica is fighting hard and some days it's more uphill than others. But we hear it gets easier... for now, keep the kind words and humor flowing freely and know that we HEAR all your posts, and even those that don't post. It was really awesome to see new people posting these last couple of weeks. (hi clif) I never knew I could feel so much appreciation and be so humbled daily.
Good luck FLETCHER kids on your amazing summers away and abroad! We will certainly miss your daily visits and eagerly await your returns with many photos. Thank you, Anita & Josh, for visiting and I can't wait to see you guys soon!! jamie...where are you?? it's been a week and you haven't returned!! we are confused... ;)

Wednesday, May 10, 2006

May 10, 2006

Thank you everyone for your encouragement and ideas. They really make a difference.
Yesterday was Day 1 again, meaning loads of chemo and other chemo-side-effect-alleviating drugs too. I know medicine has come miles and miles in its treatment of leukemia and that just years ago I probably wouldn't have survived, but I bet someday, future peoples will look back and marvel that we actually made patients endure chemo-therapy torture. It's so crazy and difficult for someone who more-or-less did "everything right"- excercise, healthy food, etc- to inject enormous amounts of poison into her body on purpose. There will be other ways.

I was pretty terrified because I felt awful during week 1 last cycle. Thankfully, I believe I can attribute that misery mostly to the residual side efffects of the radiation. I actually had a nice weekend and despite the long day at the hospital (my hermatocrit levels were very low so I had to spend considerable time receiving bags of red blood cells), had a good day yesterday too. I have been enjoying considerable time with Fletcher friends since most of them are off to their summer travels and travails very soon and am so grateful that I have the energy to do that.

Unfortunately, I have decided not to do a summer school class at Fletcher. I have been debating it for a while, but have to recognize that I am just not ready for the intense reading, the 3-hour classes, the stress, etc. It's hard to admit, but I fear that starting and failing would be a hundred times more disappointing. Jaci's taking a Mandarin class for her own personal growth, so I'm considering taking maybe painting or something. There is also a Tai Chi center not too far which I'm sure my body and mind could benefit from. This disease is sure making me have to slow down in life, in rushing toward a career and that sort of happiness I thought was all-important. It's a tough mental transition, but in desperately searching for meaning in this disaster, it's probably a good lesson. (not totally convinced)

On Monday, my doc reluctantly gave me the OK on eating sushi (only this week when my levels are all good and boosted, he conceded) since he doesn't want me to get any funky germs from uncooked foods. I am so excited and Jaci and I plan to hit up some sashimi today. Almost four months without sushi?? Now, THAT's tough.

One other thing- to my Oxy friends: who's planning on going to the reunion? I received all the paraphenalia yesterday and really want to come, but of course don't want to make the trip if you guys aren't going. Let's do it! (maybe not stay in Stewie, but...) I figure I can make anyone feel better about what they're up to these days.... =)

Wednesday, May 03, 2006

May 3, 2006

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