Warning: This is the one where she talks a little bit about *whispers* dying.
I'm thinking this will be a bit unfocused as I started with the red koolaid chemo last night (aka THE RED DEVIL) and I didn't even feel up to Starbucks. Nothing sounds good to eat. Nothing. So it was cheerios and bananas this morning. Writing on no caffeine is rather scattered for me. Bear with me. I hope to not have to "varp" this out.
-----------------------
How connected to the cancer world do I really want to be?
I have been writing for years about what it's like to be a single mom; writing about life and Zoe, about working, dating, friendships, heartaches, and the uber bizarro freaks I have met on the internet. Before October 22, 2005, I had a rather mundane life, sometimes funny, mostly sweet, sometimes sad, but it didn't revolve around this horrific central theme of cancer. The big C.
My days now are slow. I surf the net and read. I read all day. I pray. I don't watch too much television if I can help it, and I get interrupted too often to really concentrate on reading many books. So I surf the net.
And while I still read my daily hilarious reads online, I now find that I'm reading what I call cancer blogs. Blogs by those currently going through cancer, cancer survivors, and unfortunately many blogs by those who have since died from cancer. I read the Leukemia and Lymphoma forum, and people email me links all the time to other cancer resources. I get emails all the time from people who have been there done that.
And I wonder, is this good for me or am I just enveloping myself in this world? Is it all hitting too close to home? Do I want to know what is coming up with this bone marrow transplant or do I want to hide and just kind of take it as it comes.
The more I read, the more afraid I am of this transplant. The more I dread this. Even the ones that have a good outcome still have all kinds of problems. Even those that are years out still have all kinds of issues. Or have been through hell. The process is a huge pain in the ass. It's major chemo, radiation, big time isolation for about a month or more in the hospital, then about 100 days of appointments. And I need a full time caretaker (UG!) during all of it. I'm not even thinking about working after this and what will happen to my job.
I guess I should just shut it, because it's not like it's an easy thing. I'm sure God has something in mind for me with this, but why does it all have to be so scary? So hard? So uncertain?
Does reading about this stuff somehow take my hope away? Sometimes it feels that way. I want to be hopeful. I want to be cured. I want to get out of this world of the Big C. I know it will be with me forever, but I don't want it to be the sole focus of my life. There are so many other things I am looking forward to. So much life I want.
And reading these blogs and Lance Armstrong's book (he mentions this), sometimes those who are fighters and positive and hopeful, well they die anyway. And sometimes the most crotchety, lame, negative bastards... live. No sense whatsoever.
I really try hard to focus on me. As a patient. Not what anyone else has experienced. Not by any other statistics or survival rates. Not by my disease. But me. And most days that is enough, but some days I wonder. Some days I think, "is my determination enough?" I know I can be strong enough to get through this, but will I survive this?
One of the things I read that hit most close to home, was written by my now (beloved - I'm adopting them) Sarah sister's.
"Sarah's biggest fear was not for herself, but for those of us she would leave behind. I now know why Sarah was afraid."
It's the most truthful and poignant statement I have read. Sitting here in my room. Getting these treatments. Is so easy in comparison to what those that love me are going through. The ones that love me have hope and faith, but I still know it is agonzing for them. It angers them. It aches them. I hear the fear in their words sometimes. I know I see it in their faces and their actions. I see this so much when I'm with Zoe. I see how much she wants to be with me. And how hard it is to see the changes in the way I look. She doesn't understand and it hurts me to see this.
And I wish that I could just wrap my arms around them and tell them it will all be ok. And I want to, but there is no guarantee. They want to comfort, support and love me, yet I feel like I should be the one making it ok for them. But no matter how strong I am, it just might not be enough.
I walked downstairs yesterday and saw this old man in the hallway sobbing. I don't want people to do that for me. Ever. I hate to see anyone cry here because it makes me wonder who is crying for me.
I want to have faith. I want to be strong. To be hopeful. I need to keep these things in my life. I want this transplant to work because I'm not done with my life. I just am NOT. I have Zoe. She is so little. She is just now starting her life and I don't want to miss it. We have so many things that we are supposed to do together.
I also want for so many other things in my life. I have faith that these things will happen. I just wish I could have the same unwavering faith in this transplant. I'm not sure if there really is anything else that can be done but pray and try to remain focused on what I need to do. Today. And then just to do it.
I can do this.
I will do this. Because my love for you is unwavering and certain. And because if I don't, Monkey Boy is going to come to Houston and kick my ass. And when he tells me that, I laugh so hard it makes it all better.
I tried really hard to come up with a good assignment for today. I couldn't. I'm sure it's the lack of caffeine and the subject matter. I think today YOU should come up with a few assignments.
P.S. I think of Sarah as my angel too.
OH CRAP:
I wish I had Nikki here to give you the big old
lecture. I think you should read fun sites,
not all the tedious sites. We told Sarah we would
kick her "arse" if she spent time reading what
was out here on the web. Its too much sometimes
Deb. Read People, read who is having an affair,
read about the fashion.
Don't make me come to HOUSTON and shake you!
Yes Sarah is your angel she will make sure
you are OK. We could write volumes on your
blog of all the things that may help you.
Sarah did what she did for HERSELF, for us,
and for our deceased parents. Sarah was always
a fighter. Sarah would tell you DEB not to put
down your sword. Can I come and get you and hide
you for a week. We took "Malibu Barbie" and I
transformed her into "Transplant Barbie" she
rocks. She is bald, she has black and blue marks,
her own triple luminen line. She doubled as a voo-doo doll, we used to poke her when Sarah got
poked. OH we are sick, sick, sick.
Your Sarah Angel is sitting on your shoulder.
Mwah,
Shoshie
One step at a time, friend, one step at a time!
So many things I'd love to say, but they all sound lame or cliche. My heart rends for you and your going through this. It rends for your family and loved ones; I've been there too many times. The options weren't there then that are now, and I am so grateful you have them! The long hours of hurry up and wait seem interminable, and there are times you feel alone no matter who you are with, but you have to keep going. caffeine or not!
My assignment for you, should you choose to accept it, is to go to Google and type in "sunrise" and then click on "images" at the top of the page. Every day there are as many sunrises as there are people to see them; I want you to have about 4,000 more of them of your very own...
alan
Posted by: alan at January 23, 2006 01:29 PM
Your assignment: don't drink the red coolaid. I Promise.
Posted by: D at January 23, 2006 02:00 PMAt my friend's deathbed, one of the most unselfish things I ever heard her say was that she was sorry for the people that loved her. She knew they would be sad that she was dying. I will never ever forget that. And it's ok that we're sad - we do miss her - but her suffering - it was so bad for her - is over and that's so much more important than our sadness. And she lives in our hearts and our souls.
But deb - you keep fighting - she did - 5 years she did.
linda
Posted by: linda at January 23, 2006 02:19 PMDeath happens to all of us, but most of us can pretend it's far off into the future. I don't struggle each day to survive so I can struggle tomorrow. You do and you share your struggle and your daily triumphs with us.
Whatever happens, it will be okay, Deb. Humans have a marvelous capacity to rebound even after heartbreaking loss. So, if death happens, your friends and family will be distraught and mourn the loss of you in their daily lives, but the love and courage you've shown will remain with them and will give them strength as they face life's challenges/rewards. When they gather together, you will always be there in the stories they share and the pictures that undoubtedly grace the family wall. Your love will always be tangible.
Continue to fight this battle with the courage, laughter and grace you've shown so far, and beat death back to the far future, Deb. It's human to get discouraged, but it's even more human to find the will to rise above the pain. Release the worries you carry for your friends and family and hold on to the joy and hope they add to your life.
Hope, laughter and joy are stronger than despair and tears if you want them to be. I already know you choose hope, laughter and joy. You have Zoe, what other choice is possible.
Posted by: Mattie at January 23, 2006 02:31 PMDeb:
I think I should hold you like I hold my
Grace (5 1/2) and you go can cry in my arms.
Then we eat lots of food!
Love,
Lisabeth
Your assignment, for tonight, is to run away from the hospital and go to the Lenny Kravitz concert at Toyota Center.
You must wear the boa.
You must sneak backstage and kiss Lenny.
Or you can just have a really good dream about the above and write a great story instead.
:)
Your assignment is to stop making me cry, boogerheaad! I'm telling....
Posted by: Ms. Pants at January 23, 2006 04:40 PM"Is my determination enough?" It is. It has to be. Other than the medicine, it is all that you have. It is all that we have to hang on to.
Your assignment for today is to sing "Guyana Punch" in honor of the red kool-aid. There's a strange man in the jungle ... and I think I hear him calling my name. (The song always makes me giggle.) Everyone's assignment for today should be to just get through it. They just said on the news that it is the most depressing day of the year. With the weather and everything else, I believe it.
Tuesday will be better.
Keep the faith, baby. Don't stop believing. (Singing Journey songs now. Damn, I love 80s music!)
Posted by: Christine at January 23, 2006 04:40 PMYou make such wonderful observations of life around you, even as you contemplate the future. I always get something out of what you post, whether there is an assignment or not. You are a strong person.
Posted by: karen at January 23, 2006 05:15 PMDeb, I'm the Mama of a 9-year-old daughter. I've been "threatened" with serious illnesses, but to my knowledge, I don't have one now. During those times, when I was told about "odds," my strongest response was, "I'm not going anywhere; I've got a kid to raise." I don't have to tell you, you've got a kid to raise. You have determination, you have faith, you have good medicine, you have a sound spirit, family and friends, and internet strangers who love you. It is going to be one nasty mofo, getting through this. But who is better equipped, better supplied, than you are? Nobody, that's who. I pray for the day when this will be something that happened in your life, and not your life. And I have faith that day will come. I had the sweet pleasure of "meeting" and getting to know Sarah, and have been adopted by Nikki and The Sisters (sounds like a really hot girl-band, huh?), so that makes us sisters, too :) I highly recommend visiting funny sites, goofy, absurd people who make you laugh at totally inappropriate things. That's good medicine.
Posted by: Susie at January 23, 2006 06:51 PMNone of my own words seem fitting, my heart hurts for you too. Never lose hope, there are many, mutcho many of us that are praying for you.
For surely I know the plans I have for you, says the Lord, plans for your welfare and not for harm, to give you a future with hope. Then when you call upon me and come and pray to me, I will hear you. When you search for me, you will find me; if you seek me with all your heart, I will let you find me, says the Lord, and I will restore your fortunes and gather you from all the nations and all the places where I have driven you, says the Lord, and I will bring you back to the place from which I sent you into exile.
Jeremiah 29:11,
Amanda say no sad readings on the internets. You are the Queen of the Universe and stuff. I will have to get more Star and US magazines so you can read about silly lollypop shaped girls who dress like bagladies and wear ginormous bug-eyed sunglasses whilst going to the hospital from *asthma* attacks or removing breast implants, AHEM, I mean, because of exhaustion. And then you can feel superior to the girls who have everything because you are making fun of them and they want you to make fun of them because otherwise why would they get stylists to dress them like fruitcakes so that people pay more attention to them.
And now for something completely different, a quote from Kurt Vonnegut: "I tell you, we are here on Earth to fart around, and don't let anybody tell you different."
I think there is something to that. :)
* handing you all the hope I have *
I wish I could hug you.
Posted by: kristine at January 24, 2006 08:07 PMThink I misfigured the other day, was trying for 100 years worth of sunrises...starting then!
alan
Posted by: alan at January 25, 2006 03:32 AMThat post really got to me. I wish that I could say the things that I think and feel as well as you do. It was nice to read them though.
I will be praying for you.
Posted by: anne at January 29, 2006 01:42 PM