It's five thirty in the morning and I have been up for maybe an hour now. My nurse came in to check my four o'clock vitals and to draw my labs "real quick", but that entails pumping saline into my heart and then drawing out two vials of blood from my port. Sure, it's a simple little thing, and really I wouldn't even notice anything besides the smell of the saline in my nose, but it is still unnerving to know what is happening. My prednisone is also probably to blame for my insomnia.
I can basically blame a lot of my less than stellar side effects on the prednisone. The craving salty foods, the middle of the night hunger that is currently happening, the weight gain, the mood swings, the insomnia and racing thoughts that come in the middle of the night. Yesterday, I woke up at two thirty in the morning and could not stop worrying about my fish tank at home. Does my dad really know how to clean it? Is he waiting long enough after putting in the BettaSafe before changing the water? Does he know that there are two heaters and a filter and an air stone that need to be hooked up? Does he know that if the water falls below the heater it turns off? Is he feeding my fish too much? Does he know that the air pump needs to be above the tank?
Two thirty in the morning while I lie in a hospital bed with leukemia and I'm obsessing over my freaking fish tank. Thanks, prednisone.
Tonight's (or rather, this morning's) thoughts have to do with my hair. It is honestly the most ridiculous thing I could worry about. Really, Marcy? You have cancer that is trying to kill you every day and you are worried about your hair? But it's a thing. So here it goes.
So many people have offered to shave their heads for me and I have done a lot of thinking about what that means for me and for them and for anyone else in the world who would be affected by a mass Grand Rapids shave-off in my name. First, I was excited that so many people were going to be with me on this. Second, I realized that no one is actually "with me" on this. They key component that I do not get is the privilege of choice. If you choose to shave your head you get the privilege of making your style whatever you want. You might even get to feel good about yourself for having supported "your friend with cancer". But will you lose your eyebrows? Possibly your eyelashes? Will you also have a face that puffs up like a chubby bunny contestant and lips that crack from dryness? You will all still be so beautiful. Whatever you do with your short hair or your shaved heads will be a beautiful strong thing that you did, that you chose to do. Mine will be a side effect that labels me a cancer patient.
However, having voiced all of the scary and the negative to get it all off my chest... Thirdly I think of how inspiring it could be if I got together a small community of people to donate their hair. For those of us who do not have a choice, and all of the kids that I see around me here, I can only imagine how uplifting it would be for someone to receive a real wig. Some of the kids in here are really young, and probably have to deal with other kids who don't understand their baldness. They will not know what to do with stares and people trying to whisper in the grocery store. So how can I not take this opportunity to make all of my long-haired friends commit to a chop so that someone who really needs it can maybe get the chance at feeling some normalcy in public?
So here's the deal. Don't go out tomorrow and shave your head all willy-nilly. I know I am super convincing and now you all want to shave your heads... but hold your horses ;)
There are many different programs that accept hair, so do your research and make sure that you know where your hair is going. I have heard that some programs sell their donations, or throw out and do not use a lot of the hair. Others fare better, making better use of as much hair as possible, and donating the wigs for free to cancer patients. Also, if your hair isn't quite long enough yet, don't worry! One of the Child Life Specialists here at HDV told me about a fundraiser done every March by the Saint Baldricks Foundation. Not only is there a mass head-shaving event where the hair is donated, but participants can raise money for cancer research at the same time. So do your research. Do what you want, because for anyone reading this, it is likely all your choice what you want to make out of yourself.
