clouds in my miso. You’re so vain you probably think this blog is about you, don’t you? As I stared into the eye of the rumbling miso-paste storm in my bowl Carly Simon wouldn’t get out of my head. The scallions and shiitake mushrooms tumbled around. I think I was hoping that the longer I stared into the cosmic motion of fermented soy that some clarity would come to me. Maybe this is a sign I have been eating too much miso soup. Although, I don’t think that is possible.
I’ve been trying to decide whether or not to go back to Chicago for the fall semester. Why Simon’s 1973 hit was the soundtrack to this contemplative moment? I have no idea. It would be a good reminder not to be vain, that the decision is really not all about what I want. But, I don’t feel like either of us are being greedy or manipulative in this process. We have been able to have amazing clear conversations and this honesty is what keeps things feeling calm. I kept finding myself wanting someone else to make the decision for me. It was pretty evenly weighted pros and cons for each. I just wanted some omniscient voice to pop into my head and say, “go to chicago” or “stay home!” Then I could breath a sigh of relief knowing that I had made the right choice. As the sliding-doors of my life shut, I wouldn’t have to ponder all the what if’s. Unfortunately, my soup wasn’t talking to me. This was a decision I needed to make on my own.
I decided to go back to Chicago. Going forth in this process is going to be about inner strength as well as about calling on the external resources available to us. I have no doubt that the next 12 weeks of treatment will bring the full gamut of emotions. I have no doubt that there will be times when my mom would want me home – to chop up a honeydew melon and bring it to her in a bowl or to rub her feet. Tonight my mom found a copy of the letter she wrote me before I embarked on a journey to Cambodia in 2007 with a few words that seem very relevant to the present moment: “I know you’ll dive in, try it all and make the most of this time. Keep your eyes and mind open and you’ll do great.” It is a much different adventure that we are taking this summer, but approaching it with curiosity and openness can help turn it from a fearful process to an enriching one.
I have spent a lot of time in waiting rooms lately. There is a pretty amazing, unspoken connection between every single person in these waiting rooms – we are all there for the same reason – either as patients or as supporters, everyone with his or her own story and struggle, but putting up the same fight, appointment after appointment.
Last week I sat with my feet up on a chair, reading my book while my mom was in the first of 4 appointments for the day. Another girl my age walked in, toting the collection of bags and binders for her mom. Her mom wore all black – from headscarf down to the black Reebok sneakers – and her daughter had on a fluorescent tie-dye shirt; as though the antithesis to her mom’s monotone palate. We acknowledged each other when she sat down, that silent, pursed lip smile that signaled we knew we may never see each other again, but our moms are going through the same thing and for that we share something pretty incredible. It is a different smile than I get from the newspaper reading husbands – when I look around the room, they are hidden behind walls of newsprint. But here we were, sitting a few chairs apart facing out eager eyed waiting for our moms to come back out through that swinging door.
Last week, it was time to don the wig. It is short and red and the ends flip obediently underneath her ears. After getting used to seeing her bald (which I think looks great!) , a big head of (red!) hair was quite a shock. We were going out for a day of shopping and then to visit my grandmother and she thought it would be a good time to test out the new hair. She tied a green scarf around the wig for a little extra security. With the scarf in place, it took on a 1970’s flair (a paisley tunic and some white patent leather boots would have sealed the deal). Before venturing out, we played paparazzi. My camera click-clicked after her as she feigned fame – batting her eyelashes and putting her hand up to block the barrage of flashes. We left for our first stop, DAV thrift store, and soon the glamorous moments of the photo shoot were long forgotten. We wandered through the home wares, she has a penchant for finding handmade ceramic mugs, and to the books where we found a great macrobiotic cookbook. We were making our way back towards the register when my mom stopped. Standing between the front picture-glass window and a rack of XL men’s shirts, she turned to me and with her wig slightly askew and a look of total horror on her face said, “now I’m one of those weird ladies who wears a wig at the thrift store!!” We both knew exactly what she was talking about. The disheveled woman stalking the aisles of the thrift store, an obviously fake nest of hair perched on her head. We lost it in a fit of laughter and tried to rearrange her synthetic bangs to fall more naturally. With a new sense of urgency we made our purchases, darted back to the car, flung off the wig and replaced it with a beautiful green and purple silk scarf. We let out a sigh of relief, disaster averted, and realized the the musty confines of a thrift store is not the appropriate place to debut a wig.
Today was treatment number 3. After several rounds of waiting rooms and labs we finally got settled in to our little cubicle on the third floor. During the last treatment my mom’s friend was visiting and we started talking about Dr. Emoto – made famous to us by the film What The Bleep Do We Know? He is a Japanese scientist who studies water crystals and the power of intent. Because water is the most receptive of the four elements, he wanted to see what would happen if he applied non-physical stimuli to the water. He printed words and taped them to bottles of distilled water overnight then froze the water and observed the crystal formations. The results were pretty extraordinary. The water that had been sent the message of “love” or “thank you” blossomed into beautiful geometric snowflake patterns. The water that was told “I hate you” and “you make me sick” turned into amorphous bacterial looking blobs.
Considering that our bodies are 90% water, we decided to employ the same technique with the big drip bag of Cytoxin. It seems that so much of how bodies physically respond to the drug depends on the mental state with which one receives it. When my mom first spoke of chemotherapy, she was calling it “Agent Orange” – imagining it rushing rapids through her veins and wiping out everything in its path without discernment. She quickly recognized that this attitude would not help in the healing process one bit – yes it is an incredibly powerful, toxic drug, but it also has to be one of the allies. There has to be an acceptance and an appreciation in the mind in order for the body to manifest the same.
So today, in the spirit of Dr. Emoto, we blessed the bag of chemotherapy drugs with a note that said “compassionate warrior”
Friday morning she woke up and everything smelled awful. When I rose at 6:45 she had already been up for 2 hours on a cleaning rampage to discard any possible odor culprits.
Thursday night I had started to clean out the fridge – a ketchup bottle from 2007, apricot preserves coated in black mold. It had been the bane of my high school existence when friends came over after school. They would eagerly dig for a snack, going for familiar items from their own home and often find expiration dates of years past or a box of cookies that had gone limp with staleness. That’s because the inside door of our refrigerator often goes neglected. That is where the processed, packaged foods – the kinds of things that need expiration dates – reside. Ever since I can remember, there has been a real meal on the table almost every night. My mom cooked quinoa and millet before whole grains were a fad. She knew that whole foods and fresh vegetables were worthwhile before Michael Pollan wrote a book about it. The foods that were left to go bad in our fridge were ones that my mom intuitively passed over when preparing a meal. If mold doesn’t want to eat it right away, why would you?
Now, more than ever, the quest for fresh food is on. With a sensitive stomach, the slightest bit of wilt or slime could really set you off. This means shopping often and cooking small quantities. The convenience of leftovers loses its charm.
They warn that chemo patients lose their taste for foods. Once cherished dishes can become repugnant in a flash if your mouth decides to betray you. We have been thankful every day that this has not yet happened and my mom can still savor one of her great joys in life: eating.
Friday night the craving was for a big bowl of Vietnamese soup. The fresh lime and cilantro would cut through whatever pungency had been haunting her nose all day. After about an hour of debate, I drove down to 39th street to pick up two big bowls of soup. I opted for pho, my mom chose the chicken broth and egg noodles. We sat at our kitchen table squeezing limes, sprinkling bean sprouts and prudently adding sliced jalapenos. Going back for seconds, we tried as we might to prevent the dreaded leftovers. Alas, we could not conquer the quart size containers of broth. Now they rest in the fridge, probably soon to be discarded by my mom’s keen nose.
Her nurse Yvonne said the fatigue would go away if she exercised at least 30 minutes each day. Her doctor warned that they do not want her losing any weight while going through chemotherapy.
The solution? Walk 1.2 miles to Christopher Elbow’s new artisan ice cream shop Glacé. Get a scoop of fleur de sel caramel and a scoop of blackberry chocolate chip ice cream. Walk 1.2 miles home.
The eve of June 27 was a florescently bright full moon. At 12:15 am I shrieked a happy birthday to my mom who was doing some gentle stretches on the living room rug. We knew that this birthday weekend would be the one when all her hair fell out, three days after the second treatment. My mom’s first reaction to this?
“Oh perfect! I will be like a newborn baby again on my birthday! How appropriate.”
I remember smiling in amazement at this choice of response. I thought this captured so perfectly the positive spin she has decided to put on this whole situation. When friends asked “how is your mom?” I would often reply with that story, explaining that soon her hair would fall out, but it was ok because we could then have a baby shower for her on her birthday!
It felt a little different when the night finally came. We decided to go out on the front porch for a celebratory howl at the moon. As we howled she shook her head and watched the hair sprinkle to the ground. Contrary to werewolf form, she was rapidly shedding, not sprouting hair in this lunar moment.
The next night, I shaved her head. I borrowed an electric razor, put it on the shortest setting and with a deep breath began to cut her hair. A year ago it would not have been in my wildest dreams to shave my mom’s head on her birthday. I certainly think this was a once in a life time thing and the importance of the moment was not lost to me. This is why I am here. No one should have to shave their own head or howl at a birthday moon without a partner in crime.
When it was all done she looked in the mirror and with a slight quiver in her voice said, “you’re really going to see my face. And that is good, I can get to know myself better.” We all hide behind our veils of hair – it takes a strong and confident person to face the world baring all the realities of their features. Ears stick out, lumpy spots emerge from the scalp, and at that point the only thing you have to fend for yourself is the essence of your face and personality. Lucky for my mom, she’s got some beautiful, big, blue eyes and the ability to strike up a genuine conversation with anyone.
So here we are, face to face, and I am left wishing I were brave enough to shave my own head and get to know myself better too.