We talk a lot about “fighting” cancer, as if we have some sort of control over whether the chemotherapy we poison ourselves with is effective. For the most part, I find this to be incredibly offensive. First of all, it doesn’t recognize what is truly the scariest part about having cancer – the utterly devastating lack of control you have over whether you live or die. Secondly, what does it say about all of the people who died? That they weren’t strong? This I vehemently disagree with.
People die of cancer because modern medicine has not caught up with their illness, not because they didn’t fight hard enough. They didn’t lose. Modern medicine lost.
Since I was diagnosed with cancer you all have told me that I’m strong, that you couldn’t go through what I’ve been through. Y’know what? You would if you had to. Sometimes I was strong. Sometimes I wasn’t. During the month of December, when I had severe GVHD and gained almost 50 pounds of fluid and couldn’t eat or drink and was so confused that I was hallucinating, I did little but cry and beg my doctors to sedate me. Day in and day out – please sedate me, please take me back to the ICU, I want the ventilator back, it hurts too much to breathe, to exist, to feel. Please sedate me.
Of course, for many good reasons doctors won’t sedate you without medical necessity. I knew this, but I was desperate enough to beg anyway. When I got out of the hospital three months later, I spent the months of February, March, and April in an almost catatonic state. I just didn’t have anything to say anymore. What is there to say when you’ve realized that there are states of being where no matter how much anyone tries to help you there is simply no relief? When you’ve realized that you aren’t safe in your body anymore, when you’ve realized that in a single second you could be back to that place.
That’s what cancer looked like for me. For a really, really long time. And still, cancer looks like a lot of hard days for me – my body is weak, the steroids make me irritated and frustrated and hungry and swollen, the premature menopause gives me hot flashes several times a day as a sick reminder that I’m infertile. I’m trapped – afraid of germs, isolated from my life, going on my fourth quarter of a leave of absence from school. That’s what cancer looks like. Most of the time it’s not a fight – it’s a full-on beating and I just have to sit here and take it because I have no choice.
But then I remember the times where I’ve fought. What does it look like to fight cancer?
It looks like relief when you’re diagnosed because there’s finally a label for what you’ve been feeling, for all of the times you felt like you were letting everyone down because you were too weak to fulfill your responsibilities.
It looks like silence when you are poked once, twice, three times for IVs and your first blood transfusions. You didn’t even know your blood type.
It looks like sobbing quietly in the shower so your mom doesn’t hear because you know that she’s quietly sobbing outside the door. You’re sobbing because your hair – your long blonde hair that you’ve treasured your whole life – is caught in your fingers and it just keeps coming and coming.
It looks like inviting your friends over to watch you get your head shaved. It looks like smiling and writing a sarcastic blog post about being bald while you’re (literally and figuratively) dying inside.
It looks like blowing into the stupid incentive spirometer to strengthen your lungs when you have both pneumonia and RSV on top of the cancer and you’re too weak to walk. Then, it looks like walking down the hallway with your dad while he pulls your IV pole with one hand and your oxygen tank with the other.
It looks like sitting in a room with your parents while your oncologist tells you that your chemotherapy didn’t work and pretending that you believe your dad is going to the bathroom when you know that he’s really gone outside because he can’t sit in this room and hear these words that no one should ever have to hear about their child.
It looks like making friends and forming a family on your oncology unit even though you know that all of you won’t make it out alive.
It looks like withdrawing from school, wondering if you will ever make it back.
It looks like signing the consent for a more aggressive chemotherapy, knowing that it has side effects ranging from organ failure to secondary cancers. It looks like making jokes with your friends and family while they set up your next round of poison.
It looks like running to the beach the night that you’re discharged from the hospital, breathing the air in and reminding yourself that in this moment you are alive.
It looks like signing the consent for a bone marrow transplant, knowing that it’s a procedure many don’t survive. It looks like throwing up within ten minutes of the chemo hitting your veins and still consenting to more, to more.
It looks like begging for morphine, sobbing to the resident who won’t write the order and wondering how anyone could be so cruel.
It looks like forcing pill after pill down your throat and then throwing them up and starting again. It looks like flushing the central line threaded through your veins with saline and heparin every day no matter how much it creeps you out.
It looks like waking up in the ICU after a month of GVHD and asking what happened, piecing together your own life. It looks like relearning to move your legs, to sit up, to walk, to bathe, to eat. Relearning to be.
It looks like being discharged from the hospital completely broken and lying in a bed and getting through each day. Doing nothing but willing yourself to exist, to get through this second, this moment, this hour.
It looks like trying to re-start your life. It looks like being overly optimistic and pushing yourself and letting yourself be surprised when you can’t because you’re weak and tired and sick. It looks like admitting that you’re still sick over a year after being diagnosed.
Most importantly, it looks like fighting for your brothers and sisters – for the other people who will endure this suffering. I want to make it less. I want us to survive and I want us to suffer less. I said at the beginning of this post that people don’t lose to cancer, modern medicine does. So if you want to fight cancer, really fight cancer, you have to do it with research. That’s why I’m partnering with pediatric cancer non-profit Open Hands, Overflowing Hearts during September, which is childhood cancer awareness month. Pediatric cancer is the number one disease killer of children and receives less than 4% of the National Cancer Institute’s budget. We can help.
Kids are worth it. I am worth it. You all have been an incredible source of support and have offered so much of yourselves to me. Now I’m calling in those favors – give a little or give a lot. It will mean so much to me. Keep your eyes out for the fundraising page, which will be up in the next day or two. Have a happy September.