November 23, 2008
More Blue than Black
In so many many ways.
I took that picture in the ER because I had just recently got a blood draw that gushed blood for 20 minutes down my arm. It's how I ended up in the ER. I had one more blood draw after my appointment with Dr. Q where he told me I had relapsed. He was so sweet and usually jokes a lot with me, but he looked like I felt. He touched my hand when he told me, "You know what this means?" and I tearfully replied, "Yes, I've relapsed, haven't I?" He said a few more things and I waited around and made some of the hardest phone calls of my life. It was so much easier the first time I found out because I was surrounded by my women of courage. It was gut-wrenching to hear this alone.
My platelets were only at 11 (they are supposed to be in the 140 range) and the transfusion room was booked. I was going to have to wait another day. (For example, my platelets have been in the 250 range for about 2 years now, so this was freakish to me) They had to do some additional tests and I got a blood stick and then walked to the lobby to go pick up my car. I was exhausted and carrying my purse and meds and sat down to look for my $15 valet ticket. It was then that I noticed I had blood gushing down my arm and all over the new purse I got for $20. I had never carried that purse before too. What a giant bloody waste now.
There was a very kind security guard and a cute occupational therapy nurse who grabbed a bunch of big towels and wrapped my arm. The guard wheeled me to the ER where I waited to be admitted to the Big House for about 24 hours. You can't sleep there - not comfy whatsoever, but the staff is the sweetest. I feel safe here. Which makes me incredibly sad.
I am sad. Very sad. I prayed and hoped that this day would never ever come again. That I would never receive another ounce of chemo in my life. That I could use my superpowers for good to get people to donate blood, understand stem cell transplants and sign up on the marrow list to save lives. That I would live long and write and give speeches and find out my place in this messed up little world. That I could be a change for a cure for this hideous disease. Not just a ribbon pushing, consumerism wanna be cure, but one that would really finally change how they solve this disease and how they can treat people without half killing them in the meantime. Where people can live at least a better life after treatment instead of slowly re-dying. I have a faith for this cure. I know one can be found and I always felt like it might come in my lifetime. Now I am afraid that it won't.
As I sit here and watch 8 pumps fill me up with chemo and meds and antibiotics and fluids I can't imagine that I will still be here. My faith and your love and prayers are what I am living on this moment. My family's care and love and support. If they could will me better, I know they would. Even my lovely Tim and Jeanne want to come see me. That means so much to me with all that they are both going through.
But mostly I am sad because my heart is in San Antonio. I barely got to drop her off at school Tuesday and I so badly wanted to jump out of the car after her to give her more and more hugs and squeezes. I don't think she even looked back; just her usual byemom wave and skip with her ponytail blowing in the wind.
I would give anything to be in my cozy comforted bed snugged up with my gorgeous bird whisperer. To drive her to her first basketball practice tomorrow. Or even sit with her and watch insipid Disney shows just to be with her. I live to cheer for her team at soccer and basketball and take so much joy in watching her little body move and that fun spirit she shows with her friends. I adore them all and the parents are so welcoming and warm and just plain cool.
She is doing ok, although getting a little sinus thing because of the wonky weather, but she doesn't really want to talk on the phone. I'm not sure if she, or any of us, understand the extent of my stay in Houston. I just want to make it all go away so I can see her. To hold her little hand in mine when she sneaks in my bed just to be next to me. I know she is there, but sometimes I just pretend not to notice so we can snuggle.
To eat popcorn and make sugar free icees and sneak off to the movies just so we can sit in the dark and laugh and giggle. When she doesn't know it, she pulls up my shirt over my stomach a little when we watch tv in bed and she rubs my tummy and says soothingly, "Belly. Belly. Belly." Because she knows that it's hers. When I'm sick, she sometimes resents it and gets mad because I can't do more, but she also can be so caring and kind and little nursemaid to mom. Her little signs, "I love my mom because I love my mom" says it all. She's always been my girl; my mini me.
Many months I had a bad feeling about what was about to be on the horizon. I kept feeling worse and worse. And seeing one doctor after another who would blow me off. I kept having symptom after symptom and felt weak without much reason. Then the breathlessness and bruising started getting worse and I knew it was happening again. The extreme fatigue; wanting to sleep all day. The overwhelming feeling of wanting to do so much and spend time with my family and Zoe and her friends. I just don't want to miss out on my life. On her life. I can't. She is in my heart.
That's why when they did my heart scan, it was huge! They were impressed by my numbers as they usually are in the 50% range for most people. But with my MUGA scan, mine used to be 76% before, but two years later, they are now 79.5. I think I impressed the staff. But it helps to have a little piece extra to help you fight.
She is the reason I must do this. I know, and will always know, that I need her more than she needs me. Her name literally means Full of Life and it's on that strength that I must pull all of my power and resources and faith.
I can do this. I have many many reasons to.
Your assignment is to spread the word. I know from before I can't do this alone. I may not always be able to talk on the phone or answer email or comments, but I know they are there. I am always behind on thank you notes and correspondence. But I feel your prayers. I feel your strength. I appreciate blood donations and financial donations of every amount. I don't think anyone could understand how much your power of the internets really helps me not feel so alone. They help me in that way (like him or not) that Chemobama makes people want to scream and shout, "YES WE CAN!" When I get down and blue, I need to feel that. I need to feel the power of Chuck Norris, the strength of Uma and the power of the internets.
And I have my loves. They are the most powerful of all.
I love you Zoe love. I miss your sweet face. I promise to come home to you. I will make it happen. I will make it happen with your bird talking help. Love love.
Posted by debutaunt at November 23, 2008 09:51 PM!
Posted by: mrtl at November 24, 2008 05:27 AMAw Deb,
What a big ole pile of wrong this horrid disease is. Im certainly sending you all the kemia kicking vibes that I can , but as a mom I know how it is to miss your baby and as a cancer mom I really know how it is to miss them and wonder if you'll get to miss them again.
I'd love to just fill this comment box with curse word after curse word for you, lol. Do your damndest to stay strong and remember what your prize is. It will be hard, so hard on you but Zoe is worth it and I know the thoughts of seeing her grow will be a rock for you during these times.
Take Care Deb,
Rooting for you in NJ
Priscilla
Aw Deb,
What a big ole pile of wrong this horrid disease is. Im certainly sending you all the kemia kicking vibes that I can , but as a mom I know how it is to miss your baby and as a cancer mom I really know how it is to miss them and wonder if you'll get to miss them again.
I'd love to just fill this comment box with curse word after curse word for you, lol. Do your damndest to stay strong and remember what your prize is. It will be hard, so hard on you but Zoe is worth it and I know the thoughts of seeing her grow will be a rock for you during these times.
Take Care Deb,
Rooting for you in NJ
Priscilla
Aw Deb,
What a big ole pile of wrong this horrid disease is. Im certainly sending you all the kemia kicking vibes that I can , but as a mom I know how it is to miss your baby and as a cancer mom I really know how it is to miss them and wonder if you'll get to miss them again.
I'd love to just fill this comment box with curse word after curse word for you, lol. Do your damndest to stay strong and remember what your prize is. It will be hard, so hard on you but Zoe is worth it and I know the thoughts of seeing her grow will be a rock for you during these times.
Take Care Deb,
Rooting for you in NJ
Priscilla
You WILL live long and write and give speeches and find out your place in this messed up little world. I know this.
Sending you love and never-ending strength, brave one.
S. xo
Posted by: Skye at November 24, 2008 07:21 AMI will be praying for you Deb. I have the same type of Leukemia and this really has hit me personally. I am very sad and i hurt for you.
I will pray in the name of Jesus who shed his blood for us. I want you to beat this.
God bless you...Lorenzo
You have one job-kick ass, beat this for Zoe, and everyone else in your family. The rest of us will take care of the prayers, and the jokes.
I am out of Norris material (of course I had only one) but I can find some other jokes I am sure.
God bless you.
Posted by: claire at November 24, 2008 08:16 AMDeb, this made me cry, I cannot even begin to understand what you must feel like. I found your blog a couple of years ago, right before you were diagnosed. I followed your story and this summer, extremely unexpectedly, at the age of 38, my healthy, slim, fit husband was diagnosed with colon cancer. He is doing well now, but I think I began to understand the toll cancer takes on families. We have two little ones, a 4 year old and a 1 year old. And when you complained about your symptoms over the last couple of months, even I felt frustrated at your doctors for being off hand. I do hope that you recover completely and quickly from this horrid disease.
Send me a description and/or a picture of your ruined purse. I want to send you a new one. lolismum@yahoo.com
Love, love, and lots of strength.
lolismum
Posted by: lolismum at November 24, 2008 09:15 AMDeb,
Been away, just cathing up and wishing I wasn't reading what I've been reading...except for this:
"I can do this. I have many many reasons to."
Damn skippy.
Oh, Kids everywhere wear Superman PJs but Superman? He wears Chuck Norris PJs.
Somehow, I think if he could Chuck Norris would wear Deb PJs.
Everybody keeps suggesting the roundhouse kick for cancer but don't be afraid to sweep the leg. I know it's an unsportsmanlike Cobra Kai move, but screw it. Cancer doesn't play fair and neither should you. Sweep the leg on this bastard.
You're in my prayers, Deb.
Patrick
Posted by: Patrick at November 24, 2008 09:22 AMI have sat here for hours on end trying to find the words, but there are none. I am so selfish. trying to invoke some sort of magic, feel good spell on you that would take all this away...
My heart hurts for you and for your family and for all of us that come here to get our dose of the Debutaunt. I will never be the same. I hate this disease so much, it has robbed me of the most precious things in my life.
I am thinking of you , Debby. And praying for your strength, peace, comfort and the earthly cure we all so desperately desire deep in our hearts.
Forever your Friend,
Kadin's Momma
Praying for you and all of your family from Vegas.
Posted by: Crazy Lady in Vegas at November 24, 2008 12:36 PMYou are amazing. Thank you for sharing all of this. My prayers are not stopping until you see your bird talker and are in your comfy bed. And not as a means to the end, but as a once again cancer fighting ass kicker - COME ON CHEMOBAMA!!!!!
Posted by: Missy at November 24, 2008 02:17 PM
Plus you still have a million to raise. Don't think you can get out of this because of relapse. I bet people will donate twice as much for a two time champion
Posted by: Missy at November 24, 2008 02:28 PMDAMMIT, WOMAN.
I am going to go pick up the bird talker, and bring her to Dallas, and feed her too much ice cream, and set in stone her future with Nik. There is no other way.
AND.
Nik and I will see you girls in San Antonio for Christmas.
Posted by: Kami at November 24, 2008 04:34 PMMy important decision today was whether or not to heat up leftovers for dinner.
DAMN I could kick myself. Mentally, I'm doing much worse than that. While my Debu_Hero is fighting tooth and nail for her life, "What am I gonna fix for dinner" was my over-riding thought for the day. I'm pathetic. And ashamed.
How easily we forget the struggles of others---the *real* battles, the 'before-and-after' decisions that are made. The pain. The fear. The loneliness. The Uncertainty. And how we let superficial flotsam clutter our daily thoughts!
I ask you to forgive me, Debu_Hero, for my most unimportant thoughts because in the scheme of things, me and mine are so insignificant. My issues pale in comparison to the war you're waging on leukemia. Shame on me. And fight on. Please, please fight on. I will leave you with words of wisdom from the Greatest Doctor known to man:
"The Lord is close to the brokenhearted and saves those who are crushed in spirit." Psalm 34:18
He must be pretty close to me and you then. My heart breaks and aches for you. My spirit groans with each uphill battle you face---and have faced down. He is with us. I pray His comfort and healing spills over your body like a great rush.
Rest up. You'll need strength for Z's coloring marathons and non-stop Disney filmfests.
I love you Debu_Hero.
~Nita
Debu_Hero ( I like that name. It fits! )
Just checking in to wish you well today. You are always in my prayers. YOU can do this...YOU CAN do this. YOU CAN DO this...YOU CAN DO THIS!
Posted by: Yvonne at November 24, 2008 05:05 PMHi Deb,
I am so so sorry and the fact that the doctors didn't do anything for months casts shame on our healthcare system. But that's a fight that a lot of people should take up. For now, your assignment is to imagine everyone's love and prayers filling you up with good, strong, energy. I agree with Yvonne - YOU CAN DO THIS! And, you're not alone. You've got a whole world out here thinking about you.
Can I post a link to your blog? I'd like to ask people who read my blog to donate to the debu-fund.
Love and prayers,
Dee
YES YOU CAN, BABE, YES YOU CAN!!
xomox
Posted by: moxiemomma at November 24, 2008 06:16 PMmrtl sent me your way and I'm so glad she did. You're in my thoughts and prayers. Anytime you need a hug from a random stranger that's nowhere near you I'm all yours!
Posted by: Amber at November 24, 2008 06:51 PMStopping by to say goodnight--I look at this picture you have posted, and your eyes--they show courage, love, and the will to fight.
May the sun shine a little brighter for you tomorrow, and never ever give up the fight.
Posted by: claire at November 24, 2008 08:05 PMOh Deb - I just love you. YOU CAN do this and you will - one step/day at a time. I am praying for you and your family and hope that you feel God's arms wrapped around you right now.
((((HUGS))))
Yes you can.
Posted by: mrtl at November 24, 2008 09:14 PMHi Deb, I am crying as I read this and know that you have the courage and strength to fight this and win. I fighting with you...I send you love and healing. You can do this!
Love You!
Posted by: Paula at November 24, 2008 10:14 PMDeb,
Sending more good thoughts and prayers your way.
*HUGS*
Posted by: Missy at November 24, 2008 10:53 PMI connected to your blog through Obi's Sister. I will be in prayer for you and also your family.
Posted by: Pendy at November 25, 2008 11:37 AMSending lots of love from Minnesota, Debbie!!!
Posted by: Theresa at November 25, 2008 03:25 PMHow much do I love thee? Let me count the ways. How much do I hate this freaking disease? Too many ways to count. I am so sorry you are feeling the funk, Deb. Here is what I do know though. You can do this. You will do this. Enough said. It will be tough. You will feel like giving up sometimes and that is okay. You just have to pull that strength up out of yourself and keep on pushing through. I love you, chick.
Posted by: Dawn at November 29, 2008 10:30 PMHow much do I love thee? Let me count the ways. How much do I hate this freaking disease? Too many ways to count. I am so sorry you are feeling the funk, Deb. Here is what I do know though. You can do this. You will do this. Enough said. It will be tough. You will feel like giving up sometimes and that is okay. You just have to pull that strength up out of yourself and keep on pushing through. I love you, chick.
Posted by: Dawn at November 29, 2008 10:30 PMLoving you from afar, I donated and need your address so I can send you something.
My heart is aching that you are in pain.
May everyones' prayers for you be a strong beacon of light.