Sunday, November 23, 2008

102.4

Is it the fluorescent luminescence that draws me back time and time again? The bone-grinding procedures, the hilarity of my bodily functioning being table talk, or maybe those dang-good-spirited nurses smocks perhaps? No, it is is none of these things that find me here again, in yet another room at Stanford Medical Center.

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.

33 comments:

Anonymous said...

Please keep fighting for all your reasons, whatever they may be. missing you and loving every word you type. thanks erica, for sharing all this with us. I'm closing my eyes and sending you a million tokens of love and strength and anything that can travel all the way to bgame, cali.

Corinne

Claire and Bonnie said...

If we had a magic wand
We'd wave it over you
To take away leukaemia
That's made you oh so blue
But as there is no magic wand
We'll stand back gracefully
And ask in prayer that you'll be healed
A COMPLETE RECOVERY

Please keep fighting Erica and smiling that beautiful smile. BIG LOVE & HUGS and wishing you well again, Claire and Bonnie xx

P. said...

Erica ~ you don't know me, in fact I can't remember how I came to visit your blog, but I have been following your courageous, and sometimes hilareous, journey for quite some time. Your emotions are totally justified - this sucks big time. So, so hard. When you are feeling low, remember that there are a lot of us out here whom you don't even know who are praying for you and sending good vibes your way. Only you will know when enough is enough, but selfishly, I hope you continue to fight the good fight. You are just too special a gal (and still full of spunk)! Love and prayers to you, your family and friends.

Katrina said...

Thanks for sharing where you are with all of this, E. It's good to hear your voice!
I miss you and am sending you so much love,
Katie

Anonymous said...

Hey E, continue to fight, sweetie. I was very upset when I read this last blog, but I figured being in this mood doesn't help. So, I am sending you all my energy and all the positive vibes my mind and soul can send you at this moment.
Please remember that we LOVE you so much and that we are praying for you constantly. God bless you!

Te quiero mucho,

Giselle

Anonymous said...

Hi.
I found your blog through my friend Karen's blog quite some time ago. I am sorry to hear that you are back in the hospital. I will be praying for you...
Neysa,

Anonymous said...

Every week at my interfaith community's religious gathering we have a time to share our concerns with the community. We do this by silently putting a rock in a beautiful bowl made just for this ritual. The sides of the bowl are in the image of many hands, symbolizing that the community is holding onto these concerns. You and I have never met, but this week I put a rock in the bowl for you. My heart goes out to you and I pray for your recovery. Please know that your community - your family, your friends, and beyond - are holding you tight.

Samantha MacRae said...

Hi Erica,

I hear you. It is so sh***y! Please keep fighting.

My husband Graham has been told several times on his journey (Diagnosed AML April 2007) that he wouldn't make it and he keeps defying the odds.

Defy those odds Erica!

We are thinking of you.

Sam xx

Susan and Judy said...

Erica and family,

I continue to think about you all daily. Eastern medicine can do things that western medicine can't. In this case, I am praying it fills the gaps. All my love from Down Under, Susan

Sara said...

It is it is it is Erica and all the people waiting for your news every day and sending you their love are one of the reasons.

Thanks for sharing your fight with us.

Sara

Anonymous said...

I forget who said this, but I find it motivating in many contexts:
"I knew the odds, but I knew the odds didn't apply to me."

Anonymous said...

erica-


be well




this is all to fresh, my wife found herself on your path 8 months ago- If you are interested in what she chose, please email, uop1@hotmail.com
jason

Anonymous said...

It is great to hear your voice again, even with poopy 102.4 fever news.

To quote Monty Python, with a twist, "I smile in your general direction." and think of you daily with warm thoughts and tons of happy mature white blood cells!

Since I can't begin to know how you feel, in any capacity, I just feel grateful that we all (SOOO MANY PEOPLE reading this!) have you this Thanksgiving-time.
-love, gab

Sarah said...

Thinking of you.

Anonymous said...

I'm so glad the meds did bring the temp down.
I hope you can get back out really really soon.
There's still no place like home!!
God bless you and your loved ones.
Matt

Avital and said...

Just a bit of anger and fear? E, for some reason I don't think anyone would think less of you if you were pissed at the entire f-ing world and terrified like you've never been scared before. You are entitled to everything you are feeling. Express it!!

And, you should call me back!!! If for no other reason than to scream at me for being so annoying or to have someone to be silent with.

AND...

I'll sing to you...I have a VERY funny Thanksgiving song stuck in my head today and I really want to share it with you!!!!!!!!!

Abby Wood said...

Hi sweetie. Just a quick note to say that when I count the things I'm grateful for over the Thanksgiving holiday, our friendship will be high on my list. I hope you have a great time with your family over this coming week. I'll get in touch again next week. Much love, much love.

Eric Germansky said...

Erica. You may not rember me. We worked together for a brief time when you helped Aaron Rogers and me establish OCEAAN in 2002. You are continually in my toughts and in the thoughts of my family and close friends. We have such admiration for your strength, your passion and your humor. Daily I send you prayers and well wishes.

I recently started visiting your blog after James Jacobs informed me via email. It came on a day that I decided not to compete and fundraise in a 2009 Triathlon with Team in Training and the LLS, as I had done in 2008. I have since changed my mind and will be competing and fundraising as a small token of thanks to you for sharing all of your thoughts through your courageous journey. Thank you for making me look out side of myself and remember the important things that we have the power to help.

Please keep fighting. I think of you and your smile and the incredible light that you bring to the world.

With much love.

Ted said...

Hi E! Thank you for sharing this with us. I just want to let you know that I continue to think of you all the time and keep putting on my "I brought sexy back like 2 weeks ago" shirt. What a lovely color of mustard yellow you picked! I love me some JT. I hope to see you soon.

Love,
Ted

Anonymous said...

Erica,

We've never met, but as a part of the Fletcher community, I feel tied to you somehow... from reading your blog and hearing about you from other Fletcherites (I'm a first-year MALD), it's very clear that you are an EXTRAORDINARILY strong and courageous and special person. Everyone at school who knows you speaks so effusively about you and misses you so very much. All of us - even those of us who don't know you - send our deepest, strongest, most fervent wishes for your recovery and that you'll have the strength to face whatever obstacles this horrible disease puts in your way. Your determination to win this battle, and everything you've put up with in the name of achieving that victory, is truly an inspiration. Thank you for sharing it with us.

LEB said...

Erica, Hope you are feeling better and back home. I'm sending positive thoughts your way.

Charlotte Taylor said...

This Thanksgiving I am thankful for all the light that you bring to this world, Erica. Even through the emotions you are feeling right now, you are shining so brightly.

Nancy said...

Hi Erica,
I've been a follower of your blog for a very long time now. Being a fellow transplant patient, it's very hard to see you go through all of this. I can't help but wonder if it's possible to get a second opinion at "The Hutch" without going there. You can have your chart overnighted there and sent back. I know people who have done this. The Hutch has access to new and edgy clinical trials that might be a good fit for you at this time. Please consider it as I think it's worth a shot. It certainly couldn't hurt, right?

In the meantime, take care of yourself and I hope you are discharged from the hospital soon. with love, nancy

artineh said...

Life IS worth fighting for, Erica. And YOU'RE worth fighting for. I'm sending you my love each and every day. Hang in there as best you can.

Anonymous said...

Erica,

I just recently came across your site. I love your tremendous attitude and strength with which you are taking on this illness. Please keep fighting this...with whatever colored soup/sludge you have to drink!! You are in our prayers.

Samina said...

erica,

thank you for making my life better. have a wonderful thanksgiving.

i love you,
samina

Anonymous said...

Erica,
You don't know me, I stumbled across your blog one day. You are an amazing strong person, and inspiring to those of us who read your blog. I hope you have a great holiday away from the hospital.

Candace Ryan said...

Erica,

I'm glad your family and friends continue to buoy you in the rough waters you find yourself in. I hope you're feeling better and that you have a wonderful Thanksgiving.

Anonymous said...

Happy Thanksgiving to you and the whole family!

Daveychan said...

Hi Erica, I just wanted to wish you a super happy and healthy thanksgiving. Please do get better =Dave (ex-Oxy, IT dood)

Clif said...

Keep fighting, dear cousin. I wish I could have been there with my dad and Lil, visiting you last night.

Wishing you and your family a Thanksgiving filled with love and food you'll need to get your strength up.

Miss you.

Jeremy C. said...

you are amazing.

- jeremy

Amy said...

We are with you in your fight Erica!