… can sometimes seem like normal. For just a second, then something like the sores on my tongue, a peek at my reflection in a passing store window, the deep sighs that help me catch my breath – they all remind me. There are times I use my cancer card, in fact as often as I can. To grab a seat on the subway, to get out of helping with thanksgiving dinner, to get out of doing dishes. But for the most part, I try to do everything I can, as if life were normal. But there are times I can’t. I can’t make it to the Beijing Dance Co’s performance at Lincoln Center because I wore myself out on Thanksgiving. I can’t go to the closing night of the solo festival I labored on all year long, because it’s the weekend after a treatment & I’m knocked on my ass. I can’t go to a late night avant garde show with my best friends because anything after 9pm is considered bedtime.
Then there’s the actual care of one’s self. Imagine the concept? See, while on chemo it’s hard for your body to heal. In any possible way, it’s hard to heal. A paper cut here, a bite of the tongue there. It all adds up. I think of people whose lives are changed by a diagnosis in which they must make a drastic change to their lifestyle, overnight and for the rest of their lives. Like the bubble boy, allergic to everything. Or those with severe asthma that must keep everthing pristine. I imagine it, and, as silly as it sounds, am thankful that I just have cancer. That this is only temporary and I hold onto that.
When I eat, I need to ensure that the food isn’t too hot. I already burnt my tongue on the first day of chemo by the first sip of hot soup. That was 6 weeks ago & it just now feels like it’s on the verge of healing. There have been other, shall we say, mouth incidents. A few ulcers, or whatever they are inside your mouth, have popped up. You know, those little sores that randomly appear, bother the hell out of you when they’re there, and then majically disappear. Well, imagine that they don’t. So instead of becoming obsessed with them, which is easy to do, I do anything to find a little relief, and sometimes if I’m lucky, a little remedy. I chew on gum or suck on a throat lozenge whenever possible. It helps to keep the mouth & throat well lubricated. When I brush my teeth I have to be extra careful not to brush my gums too hard. When I floss I have to make sure I don’t break any skin. Then rinsing with mouthwash is extremely painful, especially on my raw tongue but I know it’s doing its job of disenfecting. And in the worse case scenario, I rinse with baking soda, salt & lukewarm water, which is about as nasty as it can get.
When my husband and twins come down with colds, I become obsessed with hand washing, whenever I touch anything, use the bathroom, touch a door handle. Hand sanitizer becomes my friend. I start to feel like an OCD person who’s fearful of germs & can’t imagine the life. It’s tiring. See the slightest illness or fever can send me to the hospital for days, and on the verge of pheumonia. So I nasal wash the girls at night in the tub, and do it to myself, but not too hard. I can’t pop a vessel. When I blow my nose, I have to do it gently.
And now that I’m washing and cleaning my hands every 10 minutes throughout the day, they are extremely dry. So after each cleansing, I must moisterize. If not, I’ll get a small cut here and there, never knowing where exactly it came from. And when I find it, I have to watch over it carefully until it’s fully healed, ensuring that it doesn’t become infected.
When I cook I have to be careful during each step. I idioitically put my hand in the skillet to adjust the bacon, just like I normallly would. Sounds stupid I know but it never hurt me before. But now, I can feel the heat before my finger touches down and I wake up, as if in a daze, and remind myself I’m on chemo.
But there are times when I feel daring, as if i say, I’ve got cancer, how much worse can it get? Being a New Yorker, one always tempts fate, but when I’m on my uphill, I’m Evil Kinevil. I race for the subway door and stick my foot in as I stare down the conductor letting her know that I’m only going in one direction. Or crossing the street, jaywalking really and doing it in front of a cop car. C’mon, arrest me. Or especially when I bike, weaving in and out of cars as I make my way crosstown. I know it’s wrong, and even stupid. I know that I must be even more careful now then ever before. But it’s at these times that, just for a moment, I feel like I’m my old self. Before cancer. Before a label that will forever put me into a category and group that no one could ever possibly wish for.
So as I go through chemo, I strive to keep life as normal as possible. If not for me, then for Graham and the girls. The girls do ask if someone is bringing us dinner on certain nights, and they’ve learned that it’s when mommy has had chemo. Sophie is asking for me to tell her the story about my boobs less and less. They don’t even think twice about my bald head. But they know they can’t kiss me on the lips anymore, so I’m finding them more and more wanting to kiss my cheeks or even my head. They’ve mastered covering themselves when they cough, but still want to jump on mommy at the most inconvenient moments. How do you say no to a 3 year old’s love? You can’t. And when they’re sick, you can’t turn your back. Even if it means you could wind up in the ER. So I also become obsessed with checking my temperature every 4 hours when the girls are sick, to ensure it doesn’t go above 99 degrees. The docters cringe when I tell them that the girls have been sick, but what do you do? Not care for your kid? Not hold her when all she needs is mommy’s comfort? Tell me one mother who wouldn’t.
So the answer is that life on chemo sucks. You feel achy, exhausted, and sometimes painful. Nutrition is the key. Eating the right things – before, during and after chemo. What’s even more ridiculous is by the time I master it, I’ll be done, and crossing all fingers, hopefully for good.