Wednesday, September 12, 2012

My best four years...

So much has happened in the last few days, and I have not had enough sleep to glibly document here for you all, so bear with me here. It all muddies together in my mind, and it takes me a minute to sift through my addled brain to make sense of it all.

Sarah has needed transfusion after transfusion; blood, platelets, blood and platelets...about every other day. She started getting fevers, probably due to her neutropenia (fancy cancer-speak for "she has no white cells") and her allergies are acting up, probably due to the extra construction dust that has found it's way from the lovely new tower through the vent system and into our room. Probably nothing to worry about, but these medical peoples are AMAZING, and they care for our little girl so much that they want to be SURE it's nothing, so they ordered an x-ray of her chest, which was clear, and started her on antibiotics for the fever, plus called in the infectious disease team, just to be safe. They may even go the extra mile and do a head CT, just to be extra sure.

I asked the nurse practitioner today how we would know if this was working, and she said that they are looking for peripheral blasts, meaning leukemia cells in her blood. She double checked for me, and said that Sarah didn't have any until today, but not to panic yet, that it could just be from the GCSF they are giving her to help her white cells recover faster. They are going to watch her for a few days/weeks before they conclude anything one way or another. We are literally just waiting and seeing.

The antibiotics have started up the shitstorm, although it doesn't seem to be as bad this time, at least, not yet. Maybe it's because she's still eating, whereas when she's on chemo, she doesn't eat anything. Her appetite has dwindled to about 50% of what it was at home, although I am happy to report that I did get her (with Kara's help/bribery! lol) to eat an entire bowlful of rice (a good sized tupperware bowl at that!) and FOUR bowls of popcorn, with a full box of apple juice! When your child hasn't eaten anything in days, this is a  major coup.

The major thing that is concerning me at this point is Sarah's mental state through all this. Sarah, as anyone who knows her can attest, is as happy-go-lucky as they come. She has her moods, to be sure, and her tantrums are horrific and Oscar-worthy performances. But Sarah isn't one to hold a grudge, or be sad about anything for too long. Things just tend to roll off her back. It's who she is. Even when things bother her, she sheds a few tears, then moves on, She is VERY easily distracted, and (usually) easily comforted. She doesn't dwell (unlike mom and this paragraph! lol) So to see my baby girl get solemn, quiet, even look sad, that is new and uncomfortable territory for me. At least when chemo knocks her down and she's just lying there looking (and feeling) miserable, I know why. It breaks my heart, and I do my best to make her comfortable and happy, but I at least know what's wrong, and I can do something about it. Not only is she sad, but she doesn't want to talk about it, and this KILLS me! I have asked the counselor to come talk to her, and the nurse practitioner is going to call Ashley in, too, since she knows and trusts her as well, to see if we can't get this girl happy again. I don't know to the letter what's wrong, but my mommy senses are telling me, and from what I can get out of Sarah herself, I think I'm right, that while she misses home, and she hates going through all this crap, the main thing bothering her, is what bothers every woman going through chemo.

It doesn't matter how tough or badass, or feminist you think you are. Every woman I know would cry her eyes out if her hair started falling out in clumps. Especially when it's not the first time, when you finally thought it was going to get to grow longer than a quarter inch, and when it won't all fall out at once. Oh, no, that would be almost bearable. No, her hair decided to leave one lopsided Friar Tuck bald spot on the side of her head, and the rest is just thinning out gradually, leaving little hairs all over everything. I put a cute hat on her, she looked at me with the most heartbreaking look, like I did it because I was ashamed, like I understood NOTHING about her pain, like I tried to put a band-aid over a bullet hole. I told her she only had to wear it if she wanted to, that I thought she was beautiful with or without it, and she ripped it off and threw it across the room. It doesn't matter how many times I tell her, or the nurses or the doctors or anyone else tells her how beautiful she truly is (STRANGERS have stopped me on the street, simply to tell me how gorgeous my daughter is! Literally. I know I am given to hyperbole, but this has literally happened, on more than one occasion.), it doesn't matter because my daughter is the epitome of girly, and she can't be girly with a bald spot on her head. I told her I would make some special bows and hats, just for her. This brightened her up slightly, for a second. Then she went back to being sad. I offered to cut my hair off, which I haven't cut in three years. She didn't answer. I don't know whether it's wise to tell her that her hair falling out makes me sad, too. So much so, that I saved the first lock, plucked it from her pillow, tied it with a ribbon, and put it in my cell phone case. The very first time her hair fell out, I saved all of it, every matted curl. A year into her treatment, I came across it and threw it out save for one tiny lock, I have it in a little ceramic box that says "My first curl" on her dresser. That first curl snipped from a baby's head is supposed to be tender and sweet, this one is just plain sad, because I will always remember where it came from.

The other thing that has her sad is homesickness, I think. Yesterday, she was crying when Dr. Kirov came in because she missed Scarlett, my mother's annoying yet loveable Malte-Poo. Dr. Kirov, who would do anything, I believe, to make this little girl smile, told her that we could have my mom bring the dog downstairs, and she could go down there with a mask on and visit the dog down there. I swear, I heard angels singing when he said this! God bless Dr. Kirov! She stopped crying immediately, and my mom made it happen today. We went downstairs (dummy me forgot the camera!) and Sarah just patted the dog's head for about a half hour, without a word. Both baby and doggie were content. She didn't say anything, but her mood was much improved after that, although she was tired. Then, when we came up, I started to unpack the bag of food my grandmother had brought up (because we're Mexican, and food is the answer to EVERYTHING!!!!) and her eyes lit up when I unpacked the small tupperware bowl full of Spanish rice. She started licking her lips, which is her newfound gesture for, "It is acceptable, and I will eat that." She moaned delightfully through two-thirds of the bowl, then Kara bribed her with stickers and a prize from the prize box to eat the rest. She ate the whole thing. Hopefully the counselor can give me some pointers on what I can do to help her feel better tomorrow.

As for me? I apparently am a robot who feels nothing unless I hear that Ronan song, (damn you, Taylor Swift!) or Grey's Anatomy is on. Cry-baby that I was in my youth, I apparently now need a catalyst to cry. Lord knows there are enough reasons right in front of me, but I have to make myself immune to get through it. It's the only way I can. I didn't watch the Stand Up to Cancer special on tv, accidentally on purpose, because it makes Sarah nervous when I cry. But the next day, it was all over youtube. So I watched. Like an idiot.And cried through the whole thing.

Why is it that it's only through someone else's pain that I can find my own anymore? Most normal people avoid things that make them cry. I seek them out. It makes me feel better to know that I'm not crazy. That song Ronan makes me cry because it reminds me of us. There is a part of me that wants to let her go, to release her from this pain. I don't want to give up, and I WON'T, but I hate that she is suffering, over and over and over. She is all I ever wanted out of life. My own child. Most little girls have career aspirations of one sort or another. If we all became what we wanted to be as little girls, the world would be half-populated with ballerinas and veterinarians and fairy princesses. Me? I was the girl who got in trouble with my religious grandmother for "breast-feeding" my doll because I had forgotten that little bottle with the fake milk that disappears. I didn't aspire to dance, or save panda bears. I aspired to  have babies.

Fast forward to me in my late twenties, married with three stepchildren, miscarrying three babies in two years. Then I became pregnant with Sarah. And she stayed. We had one perfect year. And then she got sick, and here we are.

Holding on to a child with cancer is like holding on to a handful of sand. You can hold on to the bulk of it, but they lose so much of the people they could have been, so much of their childhood. Going through this process more than once is like trying to pass that sand from one hand to another. Each time, you have less and less and less until they're just gone; and all that's left is residue. Memories where your baby used to be.

Still, with all of this, as crazy as it sounds, I wouldn't trade it for anything. With all of this heartache, this has still been "my best four years" because Sarah was in the world for all of them. She makes me laugh with her cleverness and her caprice. She is such a little person now. She is the best person I know. And that is worth fighting for.

1 comment:

  1. I have been reading your post and blogs when ever you say there is one to read. There are no words that I can say to make anything better. But, thank you for sharing this and allowing everyone a glimpse of what it means to fight cancer, what a beautiful girl Sarah and what a great mother you are.


    Gabriel (you, know, the who sat behind you for three years in TEAM? If only changing the world and things in it were as easy as changing a lowercase "c" to a lowercase "d" on a history test).