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... ;)

4 comments:

JenSing said...

Erica and Jaci,

I was just reading the other day about how airlines will give FREE flights to cancer patients - I don't remember the website so I'll have to get back to you on that one if you're interested. But it does exist, so perhaps that may be an option to explore if the doctor gives Erica the thumbs up to go to L.A.

Jen

JenSing said...

Ok, here's the website addy: http://www.corpangelnetwork.org/

Hope this helps!

Jen

Gordie said...

Hi Erica -

You don't know me but I know people you know out here in LA. I'm also a Leukemia patient, diagnosed 6/05, and am with the Eastside Team in Training. I will be doing the San Diego International Triathlon and would like to honor you by wearing your name on my bracelet. Please let me know if that's OK with you. Also, please let me know when you're in town (LA) so I can visit you and meet you! Take care and stay strong! You have a lot of people supporting you!!!

In Friendship,
Gordie Lat

PS. My whole family and friends and tested for bone marrow and are in the UCLA database. I pray that you get a match soon!

Carisa said...

Hi Erica,

It's been too long since we exchanged e-mails and I wish I had been better about keeping in touch. I often think back fondly on our time as RA's for MSI at Oxy.

I just learned about your courageous battle with leukemia from our friend Sam Kang. Please now that you will be in my thoughts and prayers.

I've been reading archived entries from the blog and I wish I had know about the leukemia earlier so I could have been involved. Your strength and courage is so impressive.

I would love it if someone could send me your address. Please send it to carisamoon@hotmail.com

This will sound so cliche, but stay strong. Know that there are many people that care for you even if it has been years since you've seen them.


Carisa Coburn Pineda