Archive for February, 2010

I have had five cycles of chemotherapy, with just one more to go. Now that I’ve ridden my version of the chemo rollercoaster several times over, I can explain a little bit what it has been like for me, starting out feeling healthy, getting a diagnosis that requires medicine that makes me feel sick, taking that medicine, starting to feel better, and then willfully taking the medicine again, knowing that symptoms get cumulatively worse with each cycle.

Here’s the best metaphor I can come up with. Chemotherapy as a treatment is like walking along and arriving at a great chasm in my path. I can’t see the bottom but am told that I must go forward into the pit if I want to continue on with my life. So I reluctantly slide down into that chemo-hole, not sure what snakes or rats or crags or spiders might hurt me along the way down, not knowing exactly where the bottom lies, whether its made of soft mud or hard concrete. I brace myself for the bottom and, once I hit, I recover some, gather up my strength. Then I scale my way back out, climbing toward light and life, looking to find solid ground again. Arriving back on land, perhaps scarred, scared, weary, and even bitten, I must walk forward again, in order to actively choose my life. Soon I face another chasm, another chemo-hole, which may or may not be like the previous one. In general, I have been told, the pits will get nastier as I progress on this path, but I also learn some crag-avoiding tricks and ways to break my fall. But down I go, and somehow, once again, I must try to find my way out of that darkness, knowing that I will crawl back into the light, only have to sink down again.

As somebody who has made life choices that generally avoid discomfort and pain, this is wholly unnatural to me. No addictions, hangovers, or self-destructive behaviors. I’ve tended more toward vitamins and yoga and eating my veggies. But if somebody held a gun to my head and told me that this was the only way to keep living, I would shrug my shoulders, take a deep breath, and march forward. I love my life and do choose, every time, to fight for it.

The time spent at the bottom of the pit is the hardest. There is a moment of time, after I have landed at the bottom and have had the wind knocked out of me, where I am stunned and confused, not quite able to take anything in. But then I get this fighting feeling and want to scramble out with as much might as I can muster. My coming to usually involves hearing my children’s voices, whether in joy or distress. I resent being sidelined from their lives. As soon as I am able, I feel compelled to get out of the hole, no matter how battered down I have been, if only to hear about their day, brush their hair, or ooo and aaah at their latest art project.

This last round of chemo has proven to come with a deeper pit than the previous chemo-holes.  The fatigue is worse, the nausea stronger and longer lasting. Any strategies I had for getting back on my feet have become less reliable. Usually a week out of chemo, I can pretty consistently have a few good hours to do something without wearing myself out. While I lay at the bottom of Pit #5, I once again watched my family through a druggy haze. I saw my husband spent and exhausted as the months of treatment march on, my children feeling lonely for me. During one of our evening snuggles, my middle child told me, “The kids at school think our neighbor is my mom,” referring by name to the wonderful woman who has taken over so much of our carpool. So last Thursday, day 7 post-chemo, I rested all morning to summon a few good hours for my family. From the moment the children came home from school, I greeted them at the door, hung up their coats, sorted out lunch boxes, took the lead in dinner, baths, homework help, sibling squabble resolution, bedtime preparation, stories, songs, kitchen clean-up, and lunch packing. The children practically purred with my attention. I turned to my husband and said, “I got them, Honey. Go take care of yourself.” He hesitated at first, but then happily went off to exercise. Later on, he sat down as I got the children to bed. He promptly fell asleep, the nights of sleep deprivation catching up to him. In all, it was about a five-hour effort on my part, but I was deeply satisfied, almost giddy, with the joy of taking care of the people I love the most.

The next day was Friday, and I barely had the two hours’ energy required to attend my daughter’s school play. The nausea came back with a vengeance. I spent the rest of the day in bed, trying to get my feet back to that solid earth I had thought I had landed on. I felt like I had slipped backwards into the chemo-hole and was clawing at the dirt, trying to stay out. By the evening, I had regained enough energy to share dinner with my family. But new symptoms were also setting in. I woke in the middle of the night with a painful tingling in my hands and feet: the neuropathy spiders had clearly bitten.

In my normal life, on Saturday mornings, I let my husband sleep in while I take care of the children and get us all ready to attend synagogue. Despite the negative consequences of my well-intended Thursday exertion, I kept thinking of how worn-down my husband was with so much caretaking on his shoulders. I felt compelled to do my part and care for my family –– I know how to do this, for goodness sake! –– and to return to some semblance of normalcy. I don’t remember which child woke first that morning, but 6 was the leading digit on the clock by my bed. I got up, made breakfast for the children, cleaned up, supervised their morning business, helped them get dressed, resolved an argument or two, tossed a football, praised a well-built Lego tower, arbitrated clothing choices, consulted on puzzle construction, praised a tough word successfully sounded out. This is the multitasking that any parent is familiar with: the false starts to a job as you are repeatedly interrupted by children’s needs; the surprising, sometimes labored conversations about what might otherwise seem obvious (“Well, you can’t pour your juice in your cereal because then it won’t taste good”); the denial of your own self as your get caught up in the busy hum of the needs of the little people around you.

Under normal circumstances, delaying a trip to the bathroom while you scramble between zipping up a dress and wiping up a spill is par for the parental course. But this kind of self-denial is not well advised in my circumstances. My husband woke up a couple of hours into the busy morning, and I went off to take one of my anti-nausea medications. But my kids knew that Mom was back, and after I wrote down my medicine next to the date and time on my record sheet, I was summoned for assistance with something –– what, I can no longer recall. I got up, helped, went back to getting myself ready, and realized that I had no idea if I had actually taken my pill or not.

I was dejected. Only one day had passed since I had fought off horrible nausea and I was in no position to skip a dose of medication. At the same time, doubling up would not be safe. I sat and wracked my brain, trying to reconstruct my actions. My short-term memory compromised, I could not, with my most concerted effort, recall whether or not I took the pill. I melted into tears, afraid of the nausea that might come if I did, in fact, miss this dose. (Note to all my well-meaning friends: I know about the labeled 7-by-4 pillboxes. I have one and find it useful only at certain times and this was not one of them.)

Saturday was a hard day. At synagogue, I found myself full of envy for parents who are strong enough to care for their children in the basic ways that I obviously can not. I felt, for the first time, deep bitterness and anger for my situation. I understand that this disease is random. I can handle that I have to go through this, but why in the world do my children have to? Why must I be sidelined from their lives? In the brief time I spent in the chemo-hole, so much had happened. My eldest had shot up and suddenly needed an entirely new wardrobe, my youngest had started dabbling with (or should I say “dribbling in”?) the potty. And where was I? Lying in bed, warding off nausea and fatigue, and now neuropathy. My anger formed a rageful prayer inside of me: I must get better. I must see these children grow. I need to not just be cured, but I need to be strong again. I need to be there for them and help them grow up. Anything else is not acceptable.

It was not a supplication but a demand fueled by the most ferocious feeling, my love for my family.

Later that day, back at home, I drifted into sleep. I had the sense that I must change. In my half-conscious mind, I continued to rage: “If I must change, then so be it. But there are certain things that are not negotiable. I will not survive and be whole if I let go of these parts of myself.” As I cried, I listed in my head the qualities that I would not sacrifice or compromise. My devotion. My love. My integrity. My humor. As I finished  my list, I landed on an insight: Fighting is not the only way to be strong. There is power in submission.

As I thought those words, something inside of me loosened and relaxed, a coil wound too tightly released. While I felt this change in a visceral way, my mind was still perplexed. Power in submission, huh? Submission? I don’t readily do submission.  I am a fighter, an active participant in my life: I choose, I think, I feel, I push back, I solve problems. How does submission fit into all of that?

The best I can understand is that I need to stand aside right now. I can best fight  by letting go of all these things and people I care about and love dearly. I need to release my grip on the details of my household and my family and really focus on getting well. It is temporary, but I must submit to my situation and let go.

It does not mean, as a wise friend counseled in the midst of my angst, that I am giving up on parenting my children. I am still present, just off to the side. I still chime in, I still cuddle and read with them. And they are learning important lessons from this experience. They see how others are there for our family. They see the meals brought to our door, the visits from those who come to help and comfort. If we make it through whole, they will hopefully give more readily when others are in need. They will deepen the tender places in their hearts.

My middle child recently wrote a prayer of thanks:  I am thankful, she wrote, “for having a house, a bed, and a loving family. For having food and making my mom’s cancer get better.”

So maybe it’s true. The kids are alright.

And let us say amen.

I caved in and got a wig. There were two sources of pressure for me. First, the daughter that everybody says looks just like me has been asking me to get a wig since she learned about the alopecia that came with chemotherapy. Then, although I thought I was going to be a brazen cancer person and go around with my comfy headwraps, never mind what everybody else thought, I got weary of walking around as Cancer incarnate.

The wig, of course, is just a form of passing. I have been starkly reminded of how much of a role appearance plays in our interactions.  There is a ton written about passing, both in the social sciences and literature. Passing makes an interesting story, in part, because it dramatizes the places where one’s private self conflicts with societal norms. Sometimes I don’t bother passing. I go out and I look like Cancer. People often treat me differently, in good ways and bad. On the one hand, they help me out and are patient with me as I fumble around in my addled state. They say kind things and cheer me on. But sometimes I grow tired of looking like Cancer. The absolute worst for me is when I feel fine and energetic and I get a piteous frown from a passing stranger. It’s withering. So some days, I choose to wear my wig and fake eyelashes, what I call my Cancer Drag. On those days, I like to pretend along with everybody else that I am well again.

Black people (and others) have written a lot about racialized interactions, where somebody primarily responds to their blackness (as opposed to their overall humanity) when they talk to them. I’m sure you can picture it. On the obvious end, it’s awkwardly addressing a black person as “bro.” On the more subtle end, it’s suddenly dropping the g’s at the end of –ing words (“how you doin’?”). When you are on the receiving end of these interactions, you learn a lot about people’s preconceived notions of who you are.

When I walk around bald and lashless, I experience –– what? Cancerized? –– interactions that reveal a lot about people’s ideas about what it means to have this disease. Many people are comfortable with me as Cancer when I am either pious and heroic (this doesn’t happen often) or sassy and kickass. People are less comfortable with me being a regular person or, worse yet, really taking in the heartbreak of what I am facing.

As much as modern people like to think of themselves as scientific and rational, superstition comes out in interactions when I look like Cancer. In fact, the problem lies with the very assumption that life is rational, that some kind of logic and order exists that gives reason to why I, for the moment, am one of cancer’s It Girls. Guilt colors what they say. I am on the receiving end of pressured and awkward expressions of gratitude for people’s own good fortune or hurried dismissals of their own troubles. I understand the distress in seeing a formerly healthy person taken down by disease. I have felt it too –– keenly. But I am so grateful when people can just talk to me honestly and sincerely. This other way of talking makes me want to wave a hand in front of their averted eyes. It feels like some kind of ritual to keep them from catching cancer.

These people are often well meaning. I know they are trying to “spare” me in these interactions. Ironically, the perspective they take does the exactly opposite. I want to say to them, Don’t worry. You won’t get cancer from looking me in the eye. I did not get cancer because I was not grateful enough. My disease is not here to teach me a lesson that you are, with your avalanche of uncomfortable gratitude, proving you don’t have to learn. I did not get cancer because I made too much of my little problems that needed to get put into proper perspective. I’m sorry to be the one to tell you, but you will not avoid cancer by minimizing your troubles. Go on and be as dramatic as you like. Cancer doesn’t really care.

That is the absolute injustice of it. And that is the heartbreak. Stop for a moment and take in the heartbreak. It might make you cry, but it won’t make you sick, I promise. Sometimes things just happen that are beyond our control.  And I am learning that this truth is very difficult for people to tolerate.