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.