Archive for June, 2010


The Appointment

June 22, 2010

I have ten minutes to get out of the house. I dash from room to room trying to pull myself together. I take off my stinky, spit-up stained shirt and pants while brushing my teeth and then rummage through the closet for something that might fit. My size has changed dramatically in the last months—from postpartum extra pounds to rapid weight loss after the surgery. And then there’s the pouch to consider. I rinse my mouth out, and pull a blouse over my head. I pause over my favorite pre-pregnancy jeans and decide to give them a try. I’m delighted to discover that they fit, even over the pouch. Next I’m brushing my hair and putting on earrings, my watch, wedding ring. From the playroom I hear the sound of Toby’s favorite reggae music. Every so often Leo squeals, clearly enjoying Toby’s dance party too.

I study my face in the mirror for a moment. It won’t do. I look pale and tired: the dark circles under my eyes are a dead giveaway. Being awakened at 4:30 am by one child and then up for the day at 5 am with the other doesn’t help the cause. I dig out my makeup case from the vanity and consider its sparse contents—some mineral powder for my cheeks, a bit of lip gloss. I rarely wear makeup. I’m almost 40 years old and I still have no idea how to apply makeup like a grown-up woman.

I stroke on the blusher, apply the lip gloss, smack my lips together, and take another look in the mirror. I still look pale and tired, only now there’s a layer of pink on top of pale and tired. Fearing I resemble the eccentric woman I see from time to time at the supermarket and post office, with bright orange lipstick smeared around her mouth and her cheeks caked with circles of rouge, I grab some toilet paper and immediately wipe my face clean. For good measure, I pinch each cheek as I take one last look in the mirror. “You are not sick,” I remind my reflection.

With all of this uncharacteristic fussing over my appearance, you would think that I was going out on a date with David or to a party or out to dinner with friends instead of to an appointment with my oncologist. After the third or fourth time of reaching for the makeup case before a doctor’s appointment, I finally caught on to what was really going on. I realized that I wanted to look so good, so healthy, that the doctors would realize that of course they had made a mistake. “You look too well to have cancer,” they’d say. “This must have been an error.” And then they would send me home and I’d never have to go to a hospital again.

I know this is silly. I know this is fantasy. I know this also quite childish. But still, I’m compelled to want to look, well, downright awesome. I want to prove to the doctors that I am too fit and healthy and strong for their euphemistic “treatments.” (As an aside, all of this oncology speak makes me think about Orwell’s marvelous essay “Politics and the English Language” in which he unmasks the language of politics and war for what it really is: jargon and euphemisms designed to create distance from the truth and responsibility of human exploitation and suffering. I’m not saying that doctors are the same as dictators by any means but the medical profession has developed a language for cancer treatments that seems to downplay their real impact on real people. And of course, cancer is “fought” as a “battle.” But I digress…and will write more about all of that later.)

Of course, I realize that my doctors and I are not adversaries on opposite teams, although I did sit through some of those early appointments with the medical oncologist and radiation oncologist at Mount Auburn with my arms firmly crossed against my chest. They want to do what? To me? And that’s the crux of it: if I feel that anyone is “doing something to me” then it isn’t the right decision or the right time to make the decision. When I think about treatment in those terms, I’m terrified. It’s the same feeling I get when I read too many studies and statistics online. Cancer becomes bigger than me and the earth goes off-tilt and I feel like I have to hold on with my fingernails to avoid falling off the slippery edge.

One glorious afternoon this spring, our dear friend Steven facilitated a conversation between David and me. At this point, David and I were each having our own separate experiences and really needed to connect. David kept remarking how he had been unable to shed a tear since all of this started. We welcomed the opportunity for Steven’s loving guidance.

We were sitting on the deck, and at some point, my attention drifted away from the conversation and out to the trees that make up the little swath of conservation land behind our house. The wind blew gently, and the leaves seemed to shimmer in the sunlight. I realized then and there that the only way I can make it through this healing journey is by having radical faith, the antithesis of fear. When Steven had arrived I was in pretty bad emotional shape. I had been mired in computer research, studying up obsessively on the prognostics and treatment options for my newly staged cancer (at this point I have to thank those three positive lymph nodes for doing such a good job of containing the cancer from spreading anywhere else!). Sure, I was learning more about rectal cancer from the studies, but really I was just making myself more and more fearful.

So the trees opened their leaves for me and invited me to join their dance. Stand tall, they said to me, and send your roots deep into the center of the earth. From there you shall draw power into your core. And raise your branches high up into the sweet blue sky, so high that you open yourself to heaven and to all of the divine love that is right here for you. Flowing like nectar. Awakening your senses. Enlivening your intuition. It’s from this place, I told David and Steven, that I need to make my decisions. It’s from the strength of radical faith that I will move forward each step of the way.  I told them my vision of the tree, and Steven added something to the image: a bright yellow sunflower, pregnant with hundreds of seeds, radiating at the heart chakra. Yes! A burst of brilliant energy at the heart, going out, coming in, providing healing for myself and for others.

And so looking tired but pretty darn good in my jeans, I put on my sunglasses and headed out to the car with my backpack and a large container of water, and drove downtown to Mass General to meet with my oncologist, Dr. Clark. We talked for a long time. I told him about herbs and acupuncture, and green smoothies and green drink, but left out the conversations I’ve had with a medical intuitive or my future appointment with an iridoligst. He told me he was fine with my taking any herbs or supplements along with chemotherapy. At the end of the visit, he handed me a prescription for Xeloda, the chemo pill I have decided to take for 6 months. I folded the paper up and put it away in my black-and-white marble composition notebook. I haven’t looked at it since.

How I arrived at the decision to take chemotherapy is another story that I am still living into. Right now, I am preparing for the treatment in body, mind, and spirit. I am also preparing to wean Leo and to let go of this aspect of mothering which is so precious to me. Another letting go. When the time is right, when I feel absolutely certain that the chemotherpay has been transformed into holy medicine, only then will I start taking the pills. I remember learning that Tibetan Buddhists believe in the ability to transform anything—any thought, any experience, any problem, any substance. Standing as a tree with my roots sown deep, my branches reaching into heaven, I too believe, no, I know, that transformation is possible.


Green Smoothie Explosion

June 22, 2010

I guess all ostomates go through certain rites of passage, including the major malfunction of one’s bag. You only hope that if and when such an occurrence should come to pass that you are in the safety of your own home. Failing that, I guess all you can do is cross your fingers and hope for the best.

It isn’t hyperbole for me to say that my life has completely changed since getting the cancer diagnosis. A wise friend phrased it this way: “Your life has turned inside out.” Yes, quite literally. One of the fringe benefits of having one’s rectum removed is getting a diverting ileostomy to allow the new connection time to heal. Fortunately, in my case the ileostomy is temporary and reversible. But until my next surgery, I have to learn how to cope and make peace with the fact of pooping into a plastic bag attached to my stomach. Indeed, my insides are outside—my small intestine sticks out of an incision in my belly. It is this cute pink stoma that has a mind of its own and poops and farts at will into the waiting vessel of a plastic bag.

My three-year-old calls it my “poopy bag” and sometimes requests seeing it, as he did this morning before we left for his play date. “Is that your poopy?” he asked while I was emptying the bag into the toilet. “Can I touch it?” “No,” I explained, “you can’t touch my poopy.” “Why not?” he asks with his big brown eyes. I patiently explained again, we had this conversation before when we caught him with his hand down his pants in fresh, warm poop, that it’s the body’s waste material. Toby nodded and seemed to recite from memory: “I eat food and it goes into my belly and then I have poopy.” After a year of diaper change struggles, he seems to have finally caught on to the inner workings of the G.I. system. Then, in the next breath: “Do you have a penis?” he asked. I love how normal body functions are to the curious three-year-old. Toby isn’t grossed out at all by my bag. David isn’t either, bless my husband’s big generous heart.

Since getting diagnosed, David and I have been the recipients of a constant stream of blessings and generosity. The prayers, love, messages, cards, gifts, childcare donations, meals, help with the kids and house are more than we can comprehend. Just last week another such gift arrived at our door: a Vitamix, gifted to us by our dear friends Sara and Mitch Levine and Sara’s parents Hedda and Gary Kopf. Because of the ileostomy, I have to eat my vegetables very well cooked, which is a total bummer, especially in the summer when I usually live on raw salads. How am I expected to heal from the surgery or fortify my immune system to fight off cancer cells if I can’t eat fresh vegetables? Vitamix to the rescue! I discovered that with the Vitamix I am able to digest and eliminate well-pureed fresh vegetables, even my favorite leafy green, kale.

The green smoothie revolution began the day the UPS driver dropped off the much-anticipated box. I’m still a Vitamix neophyte, but already I understand why people are absolutely cultish about these machines. This is no ordinary blender. This is a blender on steroids, with a lawnmower-sized engine powering it. How did I ever live without one? At the moment, my favorite smoothie is kale-arugula-cucumber-avocado-lemon, a combination I whipped up with just a flick of the switch for breakfast before heading with Toby to his play date.

For the past few weeks, Toby has talked quite incessantly about a friend at school, Maya. When we read Angelina and Alice books, Toby insists on changing the names to Maya and Lilly, our 5-year-old neighbor. Some days Toby will initiate Maya conversations like this one: “When we go to the playground Maya isn’t there and I’m sad. But then I see her coming outside and I feel happy. Sometimes she rides in my car and sometimes she drives her own.” Maya is in the younger toddler class, but this verbal little girl shares Toby’s passion for cars and fire engines. A match made in heaven. So after a few weeks of Maya talk it finally dawned on me to call her parents and see if the feeling was mutual.

And so it was with great anticipation—mine mostly, I wanted to meet “this Maya” who had captured my son’s attention—that we went to Maya’s house. The kids were adorable together and Maya’s parents were perfectly lovely hosts. Somehow, in following the kids around the house and talking to Maya’s parents I lost track of the time. I also lost track of my pouch. Usually I’m a bit of a neurotic pouch emptier—my stoma nurse thinks I’m a little OCD about wanting to keep it empty and clean, a sisyphean endeavor if you think about it, but she isn’t the one who has to wear the poop bag.

At any rate, toward the end of the morning we were sitting in Maya’s sweet bedroom reading books for a good while. Toby was snuggled in my lap and I thought: How wonderful to have such a normal morning, just like every other mom on a play date. I had managed to forget about cancer for a few hours and that feeling of separateness had faded. Then I felt a wet spot on my shirt. Although I was wearing nursing pads, I just assumed I was leaking milk. And then the wet spot bled rapidly to my stomach. I looked down and saw a dark stain on my, thankfully, brown colored heavy linen blouse. My cheeks reddened with the realization of what was going on. I excused myself, jumped up, and fled to a nearby bathroom where my fear was confirmed: the bag had come away from the base and copious amounts of green poop had leaked onto my blouse, bra, jean shorts, underwear; in other words, everything I was wearing was covered with poop. It was a royal mess.

In the midst of the green smoothie explosion, I managed to keep my wits about me. The pain and humiliation were right there and I wanted to give in to the tears, but first I had a logistical problem to troubleshoot. Fortunately, I had packed a spare pouch with me so at least I could take care of that situation. Of course I knew I could borrow a shirt if necessary, but I was too embarrassed to let my very kind and very new acquaintances in on such a private ordeal. Remembering I had a cardigan in my bag in the kitchen, I ran quickly into the kitchen to fetch it. I think Maya’s father saw me sprinting back to the bathroom in my bra and jeans, so I asked him to call his wife for me. Now that he had seen me streak by, I felt like I needed to explain the odd situation.

Jackie came to the bathroom door and instantly saw something was wrong in my face. “Oh, Jackie,” I sobbed, “I’m so embarrassed.” She was worried I was in pain, that it was my wound as she called it in her British accent. I had told them that I was in cancer treatment and had recently undergone surgery, but I hadn’t explained more than that. In a rush between sobs, I told her about my rectum being removed and the diverting ileostomy and the green smoothie and the ensuing explosion. She asked if I needed anything, but by that time I had managed to clean up fairly well and pull myself together.

Poop stains on my jeans, soiled shirt safely rolled up in a plastic bag, Toby’s shoes on his feet, a promise for another play date again soon, and we left the house. You know, some part of me wanted to just collapse and wail at the injustice of it all. Why is this happening to me? Why don’t I get to enjoy my children without the fucking hassle of this cancer? On one level, I am so angry. It’s true, and not very graceful or pretty. But at the same time, I’m driven to hold it together for my family. And yet again, the entire time I was clandestinely mopping green poop off myself I couldn’t help but laugh at the scene. Sometimes the only reasonable response to the absurdity of one’s life is laughter. I guess this is why comedy and tragedy are two faces of the same mask.

Of course, mothers aren’t exactly strangers to cleaning up major poopy mishaps. In my diaper bag I now carry small diapers for Leo, big diapers for Toby, an extra pouch for myself, and enough wipes for us all. I also carry three sets of spare clothes, just in case. Yes, the bag is heavier, but experience has taught me that a mama can never be too prepared.

Viva la revolución!

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