My girl April Capil breaks it down. Look how cute she looks at the end! Very impressive.
My girl April Capil breaks it down. Look how cute she looks at the end! Very impressive.
The other day, I was checking out my bald head in the mirror. I noticed a scar on my scalp. It’s about an inch or two long, right at the edge of my hairline on my right side. I probably would have lived and died and forgotten about that scar since it’s been hidden under my thick mass of hair for years, but the chemotherapy stripped my head of its covering, and lo, there it was.
Touching it, I flashed on the memory of its origin. I was about 5 or 6 years old, jumping on the bed at my grandparents’ house, taking advantage of their grandparental laissez faire. The humble queen mattress with its polyester spread was my trampoline and I liked to bounce high. Somehow I slipped and hit my forehead on grandma’s night table, upon which she had placed a glass covering to protect the wood from water stains. I remember bleeding profusely and my grandpa invoking his navy training as he attempted to put a butterfly bandage on my head, to no avail. After a long debate about whether to take me to UCLA or USC hospitals, I ended up in one of the ERs and had the corner of my hairline shaved so I could get the 5 or 6
stitches required to suture the cut.
Hadn’t thought about that in years.
Then I thought more about scars, looking at the smooth pink line in the mirror. They are those places where you have been injured but somehow, over time, your body manages to heal over. They never totally disappear, and I thought of the scars I have incurred already with this cancer, the scars yet to be. Scars are sensitive to touch when they are new, sometimes even after they’ve been around awhile.
My step-brother would have turned 39 next Sunday. He died just over two years ago from advanced metastatic prostate cancer. I cried every day for over a year after he died. I grieved him and had just felt like I was beginning to move out of that intense grief when I received my own cancer diagnosis.
The loss of my brother is a scar in my heart that had just begun to heal, and even then, imperfectly. My own cancer presses on that scar, making me feel new waves of sadness, loss, and pain. I want to talk to him more than ever. I understand things now about what he went through that, as close as I was to him, as much as I worked my powers of empathy to their capacity, I could not possibly understand.
Going through what I did with my brother makes me a different kind of cancer patient. On a technical level, I know more jargon than I would have otherwise. I understand treatments and protocols. I understand mechanisms of tumor growth. I learned how much is not known about cancer, and how unique and different variants of the same disease can be. On another level, I learned that you can make choices, that it’s important to keep an eye on your emotional and spiritual self in addition to your physical self. That you can –– and need to –– take
help from others and that it feels good for them to give.
My newfound understanding of what my brother went through is still limited. He had symptoms that I have been spared, particularly the bone pain that was so difficult to control. While my brother kept hopeful that one of the experimental treatments was going to cure him, his cancer was very advanced at the time it was discovered. The standard treatment protocol failed him early on. I do not know –– not in the way I am talking about now –– what it is like to live confronted so fiercely and constantly by your own mortality and to be faced with the uncertainty of the means to maintain it.
I tell myself every day that my cancer is curable. That my tumors are shrinking. Yes, I am spending way more time in bed than I care for. I feel out of it in my life. I hate feeling confused and weak. I still struggle with managing my nausea, as it always lurks beneath the surface, threatening to break through with the slightest perturbation of the delicate equilibrium I have created of drugs, rest, and imposed emotional calm. But I am curable, and the cure is working. I am not like my brother in this way, but I am connected to him as I go through this time.
So my brother is with me, partly through the scar of my grief. Knowing him and being me highlights contradictions of Cancer Culture. Because of my brother, I know how to separate the spiritual and physical battles of cancer. I’ve heard people compare a cancer diagnosis to a Rorschach: you look at it and reveal what you are really made of. I myself think of it is a forest fire: it clears out all the weak and nonessential parts of you and leaves the biggest, most fundamental parts behind.
It’s a struggle to make sure that what gets left behind are the best parts of you, though. That the essence that you cling to is an essence of your strengths, not your fears or your weaknesses. This is easier said than done. This disease, even as it is being eradicated in my body, has taken over my life. It’s marked me with my bald head, port, biopsy scars, the constant discomforts of chemotherapy. It’s marked my family, as we have had to learn to cope with my limited presence and involvement. My two year old has started to play that his doll has cancer. He asks me almost every day if I am still sick. How do I maintain a sense of my own identity, to stay hopeful about and connected to life and humanity in the face of all of this pain? Cancer Culture dogma insists that triumph in this spiritual realm will ultimately lead to a triumph in the physical realm.
No, my scar tells me. It’s just not true. And it hurts that fresh and tender scar to hear that message so relentlessly. My brother won that spiritual battle. Even at the very end, he was he: loving, gentle, tenacious, thoughtful, irreverent. His great big world, which he landscaped with mountaintops, vast deserts, and rainforests, had shrunk down to the 1 bedroom apartment where he spent his final days. But he still found ways to connect with his friends and loved ones. He still ate his favorite foods and walked outside and enjoyed the sunshine. He was he, a beautiful soul. He had his moments of anger and depression, but he was he.
We fight the spiritual battle because it’s the one we have some say over. We work to maintain a sense of our selves and not let the disease metastasize onto our identity. You can fight that fight well or fight it badly. The physical treatment will work for you or it will not. There are people who get extremely depressed, drug themselves oblivious throughout treatment, become bitter and angry. And they live. And there are people like my brother who take seriously the emotional work that cancer imposes. And they die. Studies have shown, despite our grandiose notions of our minds being able to conquer so much in the body, there is no correlation between positive thinking and survival.
Of course I would rather not be depressed and not be bitter and angry. I get that I am not immortal and if my days are numbered, I prefer to stay loving and connected. But that does not preclude honesty. And honestly, the net result of this positive mythology is we can become blind to medical realities because of our faith in the ultimate importance of the spiritual or emotional ones. Likewise, if in the course of dealing with the physical reality of cancer, we get pissed off, drug ourselves to cope, express bitterness and anger, it is often met with a superstitious reaction that somehow, this means we are not fighting the right fight.
I am fighting the spiritual, emotional, and physical battles. I do not take for granted that I am doing well on the physical front. That battle is for my mortal existence. The other fights look beyond that. They are fights for my sense of self, for my connections to whom and what I love in this world. That is worth fighting for too. And, when I am done, I hope you can all nod your heads and agree, “Yes. She had this horrible experience. And she survived it. And she is she.”
The first thing I said after I was told I have cancer was, “I can’t do this to my kids!” It broke my heart that this disease was going to become a part of their childhood stories.
Being a parent with cancer brings a number of challenges. How do you talk to your children about what is going on? How do you maintain a sense of stability in their lives as yours gets turned upside down? How do you reassure them that you love and care for them when it is difficult to tend to their daily needs, let alone play the occasional game of Chutes and Ladders?
Those are bigger questions than I am going to tackle here, but I will say it adds greatly to my wellness when I know that others are looking out for my kids.
I will start the list by naming 5 Nice Things People Have Done for My Children. I feel very fortunate to have been on the receiving end of this kind of love. I hope to give our support people ideas of the kinds of things that help. Please add on… Let’s see how many we can get!
What are some of the things people have done to support your children?
Lately, I wake up at around 4 in the morning with nightmares. They aren’t the terrifying, vivid kind that make your heart race. They are instead angst-ridden, filled with longing that is overlain with fear and anxiety.
This morning, I dreamt I was trying to drive home on a freeway. The landscape was a hybrid of the last three cities I’ve lived in. My car suddenly spun out of control. I realized that I had inadvertently run into some big multi-vehicle wreck. The other drivers sat in their cars looking stunned, this pile-up coming out of nowhere. My car was damaged so that I couldn’t control the engine or the brakes anymore. All I could do was cruise and steer, with no power to stop or go. My motion and safety depended entirely on gravity and a clear path. I managed to stay calm, steering myself away from the wreck where the other cars were stalled, banged up, and immobilized. All I wanted was to get home. Desperately.
Obviously, the dream is a metaphor for my cancer, but there is more to it than that. My life has been run off course at a peculiar moment. We had lived in our new city all of four months when I got my diagnosis. On numerous occasions, my husband and I have reflected on the strangeness of the timing of this and feel incredibly fortunate to have landed in a warm and friendly place. Nonetheless, I am left a bit off-kilter. It is hard to make new friends while feeling so needy. (“Hi! I have cancer. Sorry I haven’t learned most of your names, but I am taking medication that blows out my short term memory. Can you make dinner for my family or watch my kids or teach my classes? Thanks!”)
I am a professor. Before this, I enjoyed my nomadic academic life. There is something adventurous about having lived in several places, making dear friends, getting to know the culture and treasures of different cities. Maybe it’s pretentious, but I fancy myself a citizen of the world more than of a particular place. I go to conferences all over the globe and find old friends to catch up with or share a glass of wine. It is a precious existence.
But in my recent dreams, I am always trying to get home. Home, it seems, is not so much a place for me as it is a kind of life. A couple of nights ago, I had a meltdown after the kids went to bed. “I want my life back!” I cried to my husband. As crazy and hectic as it is, I love my life. I love my family. I love my friends. I love my job. I love immersing myself with verve in everything I do.
I am scared of who I will be when this is all through. I am scared of not having the energy or mental or physical capacity to get my old life back. In the dream I was telling you about, I got to a hill where my car couldn’t roll forward anymore. I had to get out and try to walk home. I had no idea where I was going and the path was filled with obstacles. I couldn’t tell if the obstacles were menacing or truly dangerous.
During my bedridden hours, where I am not well enough to get up but not quite tired enough to sleep, I have developed my website and promoted it on social networks. I have made connections with other cancer patients and survivors who share my no-kvetch, make jokes, stay-informed sensibilities. My favorites, so far, are a podcaster from Michigan, a French blogger, a British tweeter, and a writer from New York City. I have interacted with them and learned from them. There is a connection we have, as women who have experienced cancer at a young age. They too have had to learn to steer with only gravity and hope. They too have let go of the illusion of being in full control of their vehicles.
I don’t know where this journey is taking me. I don’t know where home will finally be. I am glad to have found some fine companions, willing to share their wisdom, compassion, and humor. I am glad too that my other friends, near and far, are rooting me along, trying to keep my path clear, doing what they can to help gravity work in my favor.
There is another conversation my husband and I have had a few times. Who would have guessed, we say with wonder, that we would end up living in the South? Two California kids! Life is full of surprises, both good and bad. Despite my cancer car wreck, we really like it here. We feel a certain satisfaction in the imagination and openness to opportunity that led us to this nice, homey city. I hope that I can sustain the same kind of imagination and flexibility as I rebuild my life and ride out this disease.
Here is who people used to tell me I look like. I know this seems stuck-up, but I realize that they were just trying to flatter me.
Now here is who people tell me I look like:
Yep. This is a very humbling experience. I miss the old flattery.