Tears of a Clown

This is hard for me to admit, especially after so many people have told me how tough I am and have complimented me on my positive attitude. But I’ll let you in a little secret: I’ve been bursting into tears recently.

Most of the time, I can’t even tell you why. Usually, it’s not even real crying—it’s more of a passing wave of sadness that results in 10 seconds of tearing up or a single whimper.

Usually, I’m kind of a goofball, joking around and making light of situations. So it’s been really hard for me, personally, to deal with the seriousness of this cancer situation.

I’ve seen a lot of articles with titles like “10 Things Not to Say to People with Cancer” or “Things to Never Say to Cancer Patients.” Those definitely apply to some people, but I’m pretty hard to offend. In Are You My Guru? How Medicine, Meditation & Madonna Saved My Life, author Wendy Shanker, who has a rare autoimmune disorder, has a great chapter on things not to say to people who are ill—and she has an amazing sense of humor, which I appreciate.

I myself am horribly awkward in these situations—including the present one. I don’t know what I would say to myself. And I generally clam up when someone tells me something awful, or stick with the honest, “I don’t know what to say.”

With a few exceptions, no one has said anything wrong or shocking. When people talk to me about my own cancer, I’m still often the awkward party.

I suppose the compliments I get now are different. “Your hair looks full.” If someone commented about my hairiness pre-chemo, I don’t know how I’d feel. But it’s currently a good thing.

Some people have expressed worry that complaining about other things when I have cancer seems selfish or trivializes my situation somehow. I don’t think so. I don’t expect the world to stop for my health concerns. There will be heat waves and heartbreaks, and I will still be here to listen.

I sometimes wish I could stop other aspects of my life, but then I think having less to do might be part of the current crying situation. I’ve kept myself busy with work and social obligations. Now that work has stopped, I continue to book 9 to 5 and beyond with job search, applications and freelance pitches and work.

I’ve been working really hard at working really hard. I’m not sure if I’m avoiding dealing with cancer or this is my way of dealing with it.

So why the crying? I feel a little helpless and scared. So many things seem out of my control right now—including my own body.

Whenever I’ve been sick with even something trivial, I feel so betrayed. I’ve done yoga since the late ’90s, when Madonna made it trendy. There’s a lot of talk about the mind-body connection, but I still feel as if they’re at odds. Even my preferred form of yoga—Bikram yoga, a series of 26 postures in a room heated to 105 degrees—doesn’t focus on harmony. You’re often pushing your body to a limit, very carefully.

This isn’t the first time I feel as if there’s been a struggle for control. Nine years ago, I had panic disorder. It started while I was in a waiting room while getting a tire changed. Suddenly, I felt dizzy, and my extremities started to go numb. I was a little nauseated and started to sweat, then I couldn’t breathe. I also felt like my brain was trying to escape my head. The best way to describe a panic attack is that you feel as if you’re dying and losing your mind at the same time.

Panic disorder happens when you’re so worried about having another panic attack that you keep inducing panic attacks. It’s a fear of fear itself.

A panic attack itself is your body’s fight-or-flight response at the wrong time. A rapidly beating heart might help if you’re being chased by a predator, but when you’re waiting for a tire to be changed or driving, it’s extremely inconvenient. It’s a physical thing—something a lot of people don’t understand. People often tell you to calm down, but it’s not an emotion. It’s a physical reaction that’s happening for seemingly no reason, and that’s why you also feel crazy.

When you end up in the emergency room a few times because you feel like you’re dying but the doctors don’t find anything wrong with you, it’s really hard to not feel like you’re losing your mind. You’re often not taken seriously. Doctors openly scoffed at me and mocked me. At one urgent care, a sympathetic nurse who suffered from panic attacks after the birth of her first child listened to me and made me feel somewhat sane. I’m not saying panic disorder is worse than cancer, but the latter is taken seriously by the medical community.

Panic disorder makes you feel so alone. And you often alienate yourself, compounding the problem. A lot of people become agoraphobic or self-medicate with alcohol with panic disorder. I feel as if I lost about a year to a year and a half of my life to it. I was able to overcome panic disorder through a mixture of medication, cognitive therapy and educating myself about it. Writing an article about panic disorder and learning so much about it really helped more than medication. (If you want to read a great book about someone overcoming panic disorder, I highly recommend Priscilla Warner’s Learning to Breathe: My Yearlong Quest to Bring Calm to My Life.)

I found myself talking a lot about panic disorder, but I haven’t talked as much about the cancer. But I talk about the panic attacks more openly because they’re in my rearview mirror. They’re in the past tense.

I haven’t told everyone about my diagnosis. There was no Facebook announcement. I don’t link to my blog on my own social media. I’ve been telling people on a case-by-case basis. And even when I tell people, I follow up with a quick, “But I’m going to be fine!” and reassure them that things are going well. (Both are true.)

In fact, my boyfriend goes with me to my doctor’s appointments not only for support but to also make sure that I don’t downplay my symptoms and side effects. I want to reassure the doctors that I am fine, but he keeps reminding me that they really need to know about any symptoms.

So a lot of people don’t see the dark side—only my boyfriend in many cases, and that’s because he’s around. And my two cats, who sometimes hear me announce, to no one in particular, “I’m sad.” Though sometimes I address the nearest feline with, “Oh, kitty. I’m so sad.” Just a sad cat lady talking to her cats.

I generally find it difficult to talk about my Hodgkin’s lymphoma. That’s why I write about it. Maybe I’ll feel more comfortable discussing it in the past tense. I certainly hope that’s the case by the end of the year. I tell myself if I got through panic disorder, then surely I can get through this, with support and some of the best medical treatment around, even though my instinct is to try to deal with this alone. Like I’m some sort of wild animal who will be left behind or eaten if I show weakness.

But doubt lingers, like the sore throat I’m experiencing. (Not another cold and eye infection! Please!) This is irrational thinking, but that last time I randomly burst into fits of tears was at the very beginning of my diagnosis, so I wonder if the treatment’s stopped working. It was, of course, also a time of great uncertainty.

At that time, right after my diagnosis, I was also experiencing night sweats. At night, I would lay down a yoga or beach towel on my bed and put on my moisture-wicking workout clothes, with extra clothes by the bed for the nights I would wake up drenched and have to change. I felt as if the night sweats were my body’s way of grieving for itself and what was happening—as were the bouts of crying. It was like my body was a sponge full of sadness that couldn’t escape through my tear ducts and had to seep out my pores at night, when I couldn’t be on guard.

My next PET scan, which will show the chemo’s progress, is in a few weeks. Even if I need longer treatment or stronger treatment, I’m expected to get better.

For now, I will let myself cry and will move forward, until I can say, “I had cancer.”

The Gifts of Cancer

On Monday, I reached the end of the internet. I’ve seen everything there is to see online. No one should have that kind of time. Not even the impending royal baby could shake me from my ennui with all things online.

Well, I take that back about the baby. My day was momentarily brightened when I realized that the newest addition to Britain’s royal family shares a birthday with my hometown of Cleveland. Christening Kate and William’s baby boy Cleveland Brown Windsor via Twitter and Facebook momentarily raised my spirits.

Still, I found myself caught up on almost everything and, instead of finding it liberating, I was a little depressed. My job had required a lot of time spent on the internet, and sometimes, I felt as if I was in that Portlandia technology loop skit. But surfing the web without purpose left me feeling adrift.

When the internet failed me, however, the U.S. Postal Service came through. A funny card arrived from a friend and former co-worker, just a note to let me know she was thinking of me.

It’s actually the third card I’ve received within this past week. Emails and phone calls are great, but nothing really beats getting something in the mail.

Maybe I’m just old enough where I remember mail as the main form of communication—postcards, letters to friends—and even to pen pals. One of my friends in Brooklyn is the former pen pal of one of my high school friends. Though we reconnected through the modern technology of Facebook, whenever people ask how me met, we laugh and tell them the story. They, in turn, always chuckle when they hear the term “pen pal,” something that people don’t really have anymore.

In May, three of my friends stopped by for a visit—they all happened to be free from work and school commitments the same week and took a road trip to Brooklyn. Of course, that was even better than getting something in the mail. That Saturday, as I saw them off on their way back to Ohio, I got a little choked up.

As I tearfully walked to my door, the mail carrier stopped me and handed me a package. It was a box from another former co-worker, filled with fun items—candies, stickers, buttons and finger puppets. Knowing that she’d picked out these items to send to me took the edge off my friends’ departure that day.

When another former co-worker asked me for my current address, I’d hoped she was sending her famous baklava. And sure enough, I got a card accompanied by her homemade desserts. Before she started her own business, she would bring baklava in to work and put them on a bookshelf in the middle of the magazine’s editorial department. People were usually too polite to eat the last one, so I usually did. I may have eaten the second-to-last and third-to-last pieces too.

There’s probably a path worn thin on the carpet from my visits to that bookshelf for various treats—Dolly Mixture from England, homemade snacks and the annual arrival of holiday cookies tucked into a bedpan from a local hospital. We assumed that the bedpan was clean, and the cookies were delicious.

So these little gifts and notes do more than just cheer me up—they bring back a lot of happy memories. I try to remember to send care packages when a friend is ill, though I often rely on delivery systems like Harry and David or Spoonful of Comfort. But now that I’ve received some care packages, I’m going to try to hand-select my gifts.

Another surprise package arrived from a friend who lives in New Hampshire, with Vermont Grafton cheddar and even a flower. The cheese saved me on a post-chemo day when I was too tired to go to the grocery store or look for food. There was also a nice note, reminding me to keep fighting to get better.

The words of encouragement are important too. Often, I’m called a tough cookie, when it feels like cancer and chemo have taken a big bite out of me. Or like they’re nibbling at my edges, stealing my hair and nails. People boost my self-confidence about my search for work. They remind me that this will all be in the past soon. This isn’t a call for gifts, but an online thank-you note.

This sentiment may seem as cheesy as that Grafton cheddar, but mostly I’m reminded of how lucky I am to have these people in my life.

Tired

I just took a nap for almost three hours. One minute, I was at the grocery store having a discussion about when mangoes are ripe and enthusiastically lobbying for the purchase of a baby watermelon, and the next minute, I was bone tired.

I knew this would happen sometimes. I napped yesterday as well. Chemo makes you tired. Mostly, I’m tired of having cancer.

I try to stay upbeat, but every now and then, I slip headlong into self-pity and a litany of complaints. I’m tired of looking for jobs. I’m tired of hustling for freelance work. My big toenails looks like this and feel like they’re about to fall off. Random stuff hurts. I can’t stay in the sun for very long before getting burnt, even with sunscreen. My fingers are numb.

I miss eating the random samples at the grocery store that everyone may or may not have sneezed upon. One of the worst parts about my compromised immune system is curbing my desire to eat food of questionable origins. And food that falls on the floor is no longer viable.

I used to invoke the five-second rule a lot. In fact, years ago, I found myself explaining the five-second rule to a member of the maintenance crew at the building where I used to work. He had witnessed me drop a French fry on the floor, then pick it up and put it in my mouth. As I rose from picking up my fallen fry, my eyes met the horrified gaze of the maintenance man. The fact that it was not even my fry, but that of an editor who I didn’t think would miss one, probably added to his confusion.

When I finished chewing (I have some manners), I explained, “Five-second rule.” I was met with a blank stare. He had never heard of it, so I had to explain how, if you eat something within five seconds of it falling on the floor, it doesn’t count. The flawed logic is that germs don’t have time to climb aboard whatever you’ve dropped. Mostly, however, the small time frame usually ensures that someone hasn’t seen you commit this questionable social behavior, so it’s like it never happened.

A few months later, when I found an article clipped from the newspaper about the 5-second rule atop my work inbox, I knew immediately who it was from and smiled. It stayed up on my cubicle bulletin board for a long time.

So you can imagine how it pains me to look at fallen comestibles, and have to throw them away.

The exception was last night, when I reached for my phone and heard something fall off my nightstand. I heard many tiny things rolling around. This was after yesterday’s nap, so I was a little groggy. I looked over the edge of the bed to see my Docusate “dolls” rolling around my (thankfully clean) bedroom floor.

The alarming part was that the cat was not only batting around the laxative/stool softeners, she was trying to eat them. And was soon joined by the other cat.

Docusate pills smell kind of like feet and fish. The cats pounced upon them like they were treats I’d neglected to share with them, impersonating Hungry Hungry Hippos.

Thankfully, the pills were too mobile and too big for the cats to easily eat, despite their best efforts. One cat just sat on them like he was going to hatch them later, hiding them under his ample belly.

I can laugh about this now, because no laxatives were ingested by the cats after all.  So there it is. A bright side. There always is, even on bad days, when I am sleepily snatching laxatives from the maws of cats. Even when it’s not a full victory, and I wonder: Would I rather lose my nails than my hair?

So chemo wiped me out this weekend. I still managed to write and apply for some jobs. I had brunch with some friends today and saw some art before slipping into afternoon exhaustion. A friend unexpectedly came into town for a bit. My cats aren’t pooping uncontrollably. Things are still good, even when I’m too tired to see clearly.

Save Ferris

Remember that band during the regrettable third-wave ska revival of the late ’90s? Well, this post isn’t about them, though I hope we can all agree that pop-ska period was a terrible time for music. I’m referring to Ferris Bueller’s Day Off. I think my body is messing with me.

As I mentioned before, it’s not uncommon for my veins to feel a little sore the day after chemotherapy. I had chemo in my right arm yesterday. So why does my left forearm hurt? Sympathy pain? Is my arm faking it like the beloved ’80s film icon, Ferris Bueller? Again, with the random Operation-type pains. Someone is having trouble removing the funny bone.

The only thing I can think of is that when I arrived home from chemo yesterday, in my Benadryl fog, I laid down for my post-chemo nap, and my cat put her paw on my right hand, where I’d had the IV. Does she have some sort of healing touch? Should I apply a cat on both arms next time? My left knee also aches, but I have only two cats.

Also, I have another new side effect. My toenails are kind of falling off. The corners of my big toes turned black and blue, then parts of the nail bed turned funny colors and now they hurt. The doctor I saw this week said that sometimes that just happens. He explained that nails in general get chemo spots or rings in them, like a tree. (Or my hair.) And sometimes they fall off.

It’s not a very big deal, though, because I hate feet. Not in function, mind you, but I just don’t like looking at feet. You’ll never see my feet on display in sandals or flip flops, which I can’t walk in. Some people think I have webbed toes or a sixth toe or unsightly feet, but they were, until recently, completely fine. Since almost all my shoes are closed-toe, no one, except for people reading this, will know about my big toe nails. But it’s weird to have toenail beds that hurt.

Mostly, I feel it’s just rude of my nails to try to leave me like this. In a time of body crisis. First, some of my hair goes. Et tu, nails?

As for my fingernails, they’re so short, I don’t know what’s going on with them. I bite them. I have since I was 4. I remember the exact moment I started biting my nails. I was playing in my yard, and I noticed that the skin under the nails separated a bit and I’ve been biting my nails ever since, for 31 years.

I thought I would stop during chemo, because I’m supposed to avoid germs, and what’s more disgusting that putting your fingers in your mouth all the time? Not much. But it’s my one remaining vice.

I can’t drink. Well, I do a little here and there. But if there’s any time when you might need a stiff drink, it’s while you’re dealing with cancer, and it’s not allowed, sadly. Plus, if you type in “ABVD” and “alcohol,” most message boards will tell you to use good judgment. Isn’t that the first thing that goes out the window when you have a drink or two? (Is that just me?) Plus, whenever I do have a drink, I’m convinced my liver starts hurting. Again, probably just my body up to its cruel tricks.

I gave up smoking years ago, though I have to confess: When I got my cancer diagnosis, I irrationally wanted a cigarette. Just kind of as a way to say, “Oh, yeah? Cancer? Well, take this!”

Of course, having cancer and visiting a cancer hospital will scare the desire to smoke out of you. It’s not like one of those Beyond Scared Straight shows on A&E, where they scare at-risk kids with visits to prison. I know a lot of anti-smoking ads focus on the gruesome aspects of lung cancer and emphysema. But what gets to you at the hospital is the tedium. The insurance red tape, the bills, the fact that one expensive habit leads to an expensive fight for your life.

I have always felt, whenever I get sick, mostly with colds or eye infections, that my body is betraying me somehow. It’s mind versus body. And cancer is really one of the ultimate betrayals.

Before I got Hodgkin’s lymphoma, I was in pretty good shape. I tried to work out almost every day, either going to fitness boot camp, vinyasa yoga or Bikram yoga classes. I was eating right. I drank a lot of water. I thought my body and I were cool.

Some people get really angry about having cancer. I don’t know if it’s because I have one of the “best kinds”—unlike lung cancer, which I was heading towards during my smoking years. Hodgkin’s lymphoma seems like kind of a mystery as far as causes go. It seems like bad luck.

Also, since cancer is your body’s own cells going renegade, it seems like a form of self-hatred to get angry at the cancer. It’s part of you, in a way. It’s like something else that you don’t like about yourself—a big nose or a slow metabolism or paralyzing shyness—times a million.

So I’m not angry. I’m just…hurt.

Until then, I will apply a cat to my left arm, in case that actually works. I don’t want it trying to play hooky and getting into all sorts of hijinks. Or do I?

Making Your Own Luck

For the first time since I was about 10 years old, I found myself looking for a four-leaf clover this week. As I weeded the brick path of the community garden, I examined the few patches of clover I found for any lucky ones.

I’ve never found a four-leaf clover, outside of the plastic or paper shamrocks at St. Patrick’s Day celebrations. But I figured I could use some luck. I’ve had two job interviews and sent out countless resumes. I have a PET scan in about three weeks to see how the chemotherapy is working. When you’re waiting and hoping for good news, you’ll take anything as a good sign.

About four weeks ago, the evening before the company I worked for shut down, I was weeding the paths in the community garden. I thought that if I had some time off, I would completely conquer the paths and free the bricks from the weeds, at least temporarily. The paths are never weed-free all at once, because once I weed the path, they’re back in a few weeks.

Now that I finally had time this week, finally over my cold and eye infection, temperatures outside soared over the 90-degree mark all week. That’s not good luck. So I stopped by early in the morning, to beat the heat. There’s something therapeutic about weeding the paths. Almost all the plants growing in between the bricks aren’t supposed to be there. A landscape architect I interviewed once told me an old garden adage: “A weed is just a plant out of place.”

So I don’t have to think much, except for the occasional pressing matter: “Why are all these ants crawling on me?” and “I hope that’s not poison ivy.” With my mind freed up, I can reflect on the random information that collects in the junk drawer of my brain. “Whatever happened to Tom Green? I really think his show was a precursor to Jackass and other shows I didn’t like, when MTV started to lose me.” Or, “I really liked that Jesus Jones album in 1991, but I think if I went back and listened to it, it wouldn’t hold up.”

I don’t think about cancer all the time—I don’t think anyone does. The other day, my boyfriend noticed I was pensive and looked upset as we were walking home from a comedy show, so he asked me what I was thinking about. “The first Sex and the City movie was on the other night, so I watched it, and it’s even worse than I remembered,” I replied. “It’s so bad that, for me, it even ruined the TV show, which I used to love.” Some people seem relieved that I still have the energy to reserve such ire for trivial matters.

Sometimes, however, I get a strange chorus in my head that’s just, “Cancer, cancer, cancer, cancer.” Just that word, over and over again, like Jan Brady’s jealous proclamation of “Marcia! Marcia! Marcia!” on The Brady Bunch. More alarmingly, I suppose it’s also like the phrase “All work and no play makes Jack a dull boy” typed over and over again in Stanley Kubrick’s film version of The Shining. So either my subconscious is jealous of all the attention the Hodgkin’s lymphoma thoughts are getting, or I’m losing my mind. Probably a little bit of both.

As I weeded that morning, I didn’t find any four-leaf clovers. But my search sparked a childhood memory I hadn’t thought about in a long time.

When I was little—maybe from the ages of 4­ to 6—my grandma would get out sheet music and we’d sing songs together. This is notable because no one on my mom’s side of the family can sing. In my 20s, a friend and I stayed with my mom and my grandma to see a Peter Murphy concert in Cleveland for her birthday. My grandma baked her a cake. She was an amazing baker. I explained that we meant well, but we’d all be off key. To anyone who celebrates birthdays with us, I assure you, the song is mercifully short and the homemade cakes are delicious.

I’m not sure if my grandma could sing at one time, but age made her voice a little creaky. My mom always sings high and off-key. I don’t sing. In fact, even when I’m required or expected to sing, I usually would just lip sync in high school choir, church and birthday parties.

But in those days, my grandma and I would get out the sheet music and sing a few songs, joyously and loudly. One of these was “I’m Looking Over a Four Leaf Clover,” the 1948 version by Art Mooney. (Apparently Willie Nelson also has a version of this song, but c’mon—do we really think he was looking for clover on purpose or he happened upon some while looking for a different type of harvest?)

The other was “You Are My Sunshine.” The line, “So I hung my head and cried,” always sent me into fits of laughter. Not because I enjoyed dark lyrics—that would come later, during my goth years in high school and college. At 4, I wasn’t familiar with the term hanging your head, so I pictured this poor guy taking off his head and hanging it on a coat rack to cry and dry off. And that image is hilarious to a 4-year-old.

Since then, I don’t think I’ve ever really sang a song without some degree of self-consciousness or self-awareness. I got the picture when I was never picked for singing or dancing parts in grade school productions.

My grandma died in 2006, so I can’t ask her why we sang songs together, other than it seemed to be a lot of fun. That must have been the point. Just doing something fun even if you weren’t very good at it. I’m not sure that lesson stayed with me, as I stress out over everything from how I do on these interviews and tests to whether or not I’m doing all I should to beat cancer.

I wish my grandma could have seen me move to New York City, by far one of her favorite places in the world. She took me here first when I was 10 years old. She thought the city was so exciting and enjoyed interacting with so many people.

So I didn’t find a four-leaf clover the other day. But the next day, as I boarded the A train, a man was playing the guitar and singing. He was playing “You Are My Sunshine.”

Please Excuse Our Appearance

I know in my last post I said I wasn’t going to cook meth Breaking Bad-style, but that was before I realized how much my COBRA payment was going to be. I’m baking cookies for tomorrow’s community garden meeting, so I’ll see how that cooking experiment goes before I set up my lab.

Still, I’m grateful to have COBRA to carry on with my health insurance while I look for a new job. The opthamologist I saw the other day asked me what COBRA stood for, as I gave him the abbreviated story of my Hodgkin’s lymphoma, my job loss and my insurance situation. I later discovered it stands for the Consolidated Omnibus Budget Reconciliation Act. But it’s aptly named because it poisons your soul and sinks its fangs into your unemployment check.

I had made an appointment with this new doctor after nearly three weeks of a lingering eye infection. My boyfriend suggested him from the list of opthamologists within my insurance network because, according to this doctor’s credentials, he also has a degree in philosophy from Yale. Perhaps he would understand my existential crisis and anguish brought on by wearing my glasses. Also, he had an appointment open right away.

I knew I made the right selection when, after hearing my health tale, he made the following analogy: “I think the eye infection may be the least of your concerns,” he said. “It’s like World War II is going on, and the eye infection is a battle for a small island.”

He’s right, of course. I have been focusing on my eye problems, though I could argue that my nearsightedness makes it even harder to see the big picture.

Things are still going pretty well, all things considered, but this past week I’ve been plagued with random pain twinges more than usual. It’s not that they’re even that painful, just puzzling. And slightly alarming. Like someone’s playing Operation and hitting the sides. Stop dropping the spare rib already!

Right now for instance, I have a slight twinge in my abdomen. What’s in there? My liver? Then the worries begin.

One of my favorite funny writers, Laurie Notaro, describes the random pain pangs of being in her thirties in I Love Everybody (and Other Atrocious Lies), as being located in areas devoid of major organs, “places I thought were used for extra storage, for things like extra bile, a couple of feet of rolled-up intestine, balls of hair that may come in handy in the future, maybe some additional vein parts, or bits of corn.” In the book, Notaro worries she has cancer, and I don’t mean to alarm you, hypochondriacs, but that’s exactly what it feels like. Or at least that’s what my chemotherapy side effects feel like.

The other side of my chest has twinges too. And my arm socket is sore, as is the back of my neck on my less cancerous side. My doctors, at least, aren’t alarmed. When I bring these things up, the answer is, “Well, you have Hodgkin’s lymphoma and are undergoing chemo.” So I try not to worry, even when it feels like someone’s been messing with the wishbone again and my nose lights up.

I also haven’t been able to shake this funk for the past several weeks, since losing my job and having the eye infection. After applying for several positions and taking a test for a job, all of my worries and insecurities caught up to me in the middle of the night. I couldn’t sleep and sunk into despair about my ability to land a new job, my hair loss and, yes, my glasses.

Not working out on a regular basis because of everything that’s been going on is also catching up to me. I feel bad when I’m a little winded after reaching the top of a long flight of subway stairs.

I feel squishier than I used to. I’ve had to wear my glasses. My hair’s thinner. I feel diminished. Whether it’s at a job interview or walking down the street, sometimes I want to put up a sign that says, “Please Excuse Our Appearance While We’re Under Construction.” Or reconstruction, I suppose.

I realize that I’m very lucky as far as cancer patients go. And lately, I’ve realized that the thing that’s making me unhappy isn’t even the cancer so much—it’s my insecurities. I’ve spent the past few weeks obsessing about how I look or grappling with self-doubt about my career.

I’ve had these insecurities a lot longer than this cancer, and they’ve probably affected my life much more negatively over the years than this disease, a relative newcomer. They’re so ingrained, they may even be harder to find and treat. But now that I’ve diagnosed some of these nagging self-doubts and insecurities, I can hopefully shed those along with the cancerous cells.

Breaking Bad: Bills and Anger

I recently started watching Breaking Bad. I’m not sure I’ll see all the seasons before the show’s final six episodes air in August, but this seems like an easy, attainable goal to set for myself—not quite as pressure-filled as finding a new job, getting freelance work and getting rid of cancer. I actually recently put that last one on my to-do list.

Breaking Bad is meant to fill the void left by completing The Wire and the end of this season of Mad Men—although this last season, for me, was a little more meh men. And, of course, this seems like the perfect time to be watching a show about a man with terminal cancer driven to cooking meth to pay his medical bills and support his family.

I can sometimes relate to Walter White’s uncharacteristic outbursts. While I’m not in the nothing-left-to-lose frame of mind, sometimes something very little sets off anger—or sadness. This small thing happened and I have cancer.

It doesn’t happen very often for me, although I joke that Seinfeld’s Frank Costanza is my spirit animal. However, after having my biopsy surgery in March at Memorial Sloan-Kettering Cancer Center to confirm my Hodgkin’s lymphoma diagnosis, we had to catch a cab back to Brooklyn. Groggy and newly stitched, I wasn’t in the mood for cab drivers who just don’t like to go to Brooklyn. We were also facing drivers in between shifts. That’s how I ended up hanging on to a cab’s locked door, screaming at a visibly alarmed driver, “I just had surgery and you can’t take me to Brooklyn!”

Once the crazy lady was made to wait on the sidewalk, we got a cab. On our way home, my boyfriend looked at me and noted, “You can’t keep a good woman down.”

And even with insurance, cooking meth for extra cash seems pretty tempting. Obviously, my situation isn’t nearly as dire. But sometimes, in the middle of the night, the snakes from the medical symbol slither from their post and curl up in bed with me. “$$$$” they hiss, one in each ear. “Thi$$$ i$ going to be expen$$$$ive.”

Of course, aside from the whole moral dilemma, there are a few other reasons I’m not following in Walt’s footsteps. I have no idea how I got through high school chemistry. One of my lab partners and I set a paper towel on fire—she decided to start cleaning without turning off the Bunsen burner. Another lab partner almost set a fellow student ablaze, because she was goofing around and setting his apron strings on fire. The fire would quickly go out, but one time, it took an extra second for it to go out, and I have to confess, I just stood there with my mouth open. Looking back, I probably should have stopped my partner from actually playing with fire.

I also recently failed to bake cookies in our new oven. (Well, new to us.) I put the cookies in and then the apartment filled with smoke five minutes later.

So it’s probably best I don’t work with volatile substances.

I don’t think I’m cut out for a life of crime, either. I’ve always been a goodie-goodie. I don’t jaywalk. I get upset when people don’t come to full and complete stops at stop signs. I’ve thought about making a citizen’s arrest when local police have driven through the traffic light at the end of my street. (I’m told that won’t go over well.) But I figure my new unemployment will give me time to finally patrol the streets and keep them safe. I also might become a pet detective and look for all the lost animals in the neighborhood.

Alas, neither will bring in much cash, so I just buy a lotto ticket every now and then. And now that I have Breaking Bad to catch up on, my citizen patrols might have to wait for now.

Halfway!

The fireworks over the Hudson River weren’t specifically for me the other night, but they might as well have been. A festive picture is in order since yesterday was my sixth treatment out of 12, meaning I’ve already hit the halfway mark. If things go according to plan, I have three more months, three more cycles, six more treatments.

I optimistically announce to everyone, “Only three more months to go!” But of course, there’s sometimes a smaller, nagging voice that impatiently sighs, “Three more months?”

At first, when I found out about the Hodgkin’s lymphoma in late February and figured out my treatment schedule, I was a little bummed out that the six months of chemo would steal my summer. It seems trivial, but I thought, “Why couldn’t I have chemo in the winter, when it’s already gloomy?” When I wouldn’t have to be so careful about staying out of the sun because of the Dacarbazine (the “D” in ABVD)?

But, as it turns out, the summer does go by faster, and here I am, halfway done already. There’s never a good time to get cancer anyway. No beach trips and remembering to wear my ridiculous sun hat in the community garden is a small price to pay. And as I learned from my few weeks of having a cold, too much time indoors makes me prone to unflattering self-pity. A friend who noticed this made sure I at least made it out to my stoop one day, so we could chat outside like real Brooklyn ladies.

I should also note that I’m having a pretty good experience overall with my Hodgkin’s lymphoma treatment. Everyone’s different. I don’t want to give people false optimism, but it’s also possible to freak yourself out if you read a lot of negative experiences. For me, the worst parts were before the diagnosis (not knowing what was wrong) and before the treatment (not knowing what to expect). I think it’s a good idea to get views from several different perspectives. I found “Running from Dr, Hodgkin’s Disease” to be extremely informative when figuring out what to expect. There are also lists of blogs, such as the one at beingcancer.net. The StupidCancer.org website, which I discovered through Kairol Rosenthal’s Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s, is also a helpful resource.

When the nurse in charge of my treatment saw me yesterday, she noted, “You kept your hair!” and asked me if my hair had been really thick beforehand. As I noted before, my years of being a hirsute lady are finally paying off. You know you’re a swarthy woman when your eyebrow threader notes she hasn’t seen you in a long time. I just got my eyebrows threaded for the second time in three months, instead of my usual visit every three weeks.

Even though I’ve lost a lot of hair, it’s not noticeable. It makes me feel better about my lingering eye infection and my acid reflux. Everything that’s ever bothered me healthwise—which really isn’t much—is kicking me while I’m down, it seems, but I just have to be a more patient cancer patient.

I’ve had acid reflux on and off through the years. I suppose celebrating our nation’s independence with a hot dog, a chocolate-covered Key lime pie and cheesy pizza wasn’t the best idea either. The doctor prescribed medication, but I’m waiting to hear about an alternate prescription. At the pharmacy, I discovered that my insurance doesn’t cover Prevacid, and the price tag is a heartburn-inducing $150.

Now is as good a time as any to tell you about my own experience on chemo days. I usually see my doctor first if I’m going to the MSKCC Manhattan infusion center—otherwise, I visit with the doctor the day before and then visit the swanky new Brooklyn infusion center the next day.

Before my very first chemotherapy appointment, I read up about each medication, but I was surprised to find two Tylenol and a Benadryl also waiting for me. Those are to combat flu-like symptoms that sometimes accompany the treatments. Honestly and luckily, the sleepy Benadryl haze is the worst part for me. This is also when I usually take the first of the three-day Emend anti-nausea medication.

One of the side effects is constipation for about three to five days afterward, so I also received Senokot, a vegetable-based laxative, and Docusate, a stool softener, to take in the evenings. I also received Ondansetron for any additional nausea. I keep these in my nightstand and call them my “dolls.”

Apparently, I have tiny veins, so the nurses usually heat up my arm first to find them. Once, I got a nurse who had cool phlebotomy glasses that allowed him some sort of X-ray vision to find my veins, but he was just taking blood and not doing IVs. The best part of the IV administration is the looks my squeamish boyfriend gives me as he sits opposite me. It’s funny and makes me feel tough.

Once a vein is procured, they administer more anti-nausea medication and steroids through the IV. Then the nurse “pushes” the first three medications through the IV. These are the red Doxorubicin, sometimes called the “red devil.” It doesn’t bother me much, other than the red color showing up in my urine right afterwards and a sometimes very slight metallic taste. Disconcerting, but not demonic.

The Bleomycin is the reason the doctors and nurses ask about your breathing and shortness of breath before every treatment, because it can cause lung problems. I’m generally a bit more tired if I try to do cardio the first few days afterward, but I don’t think I have the Bleomycin to blame. Cardio was always my weak spot when working out anyway.

Vinblastine sometimes stings a bit going in, but the nurse always checks to make sure she or he isn’t hurting you, and they can slow down the injection. I usually don’t even notice it.

The Dacarbazine is my least favorite, because it takes the longest, and by the time it kicks in, I’m sleepy from the Benadryl. It sometimes makes my veins ache. It’s a cranky pain that doesn’t let you relax. One nurse, however, told me that some people say it makes their arm feel like it’s falling off. The nurses will slow down the drip to lessen the pain and discomfort and sometimes a heating pad helps. It’s also the medication that makes you a little more sensitive to the sun—along with the Vinblastine—so I’ve come to think of it as a fun-killer.

Then I’m released and it’s over. I usually take a nap as soon as I get home. The exception was last week, when I lost my job and had too many thoughts and worries buzzing around my head to rest. I would lay down, but my eyes would remain open, like an old doll with broken eyes. I’m talking about toy dolls, from the ’70s and ’80s with eyes that fluttered, and not my new “dolls” in my nightstand.

The evening after chemo, I feel a little tired and a little hollow in the head, but I really think it’s from the Benadryl. It’s the same feeling I get when I watch Keeping Up with the Kardashians or a marathon of The Real Housewives of Orange County. I use this time to read or catch up on celebrity gossip.

Several years ago, I finally weaned myself off of celebrity gossip sites, but it’s really all my brain can process those post-chemo evenings. Last night, I caught up on the goings-on of Amanda Bynes and realized that North can be a girl’s name. (Also, can anyone tell me if Khloe Kardashian and Lamar Odom are together or not? I really feel as if I have access to two parallel universes and the only difference is in one, they are splitting up, and in the other, they are making plans for a baby. No one notices this slight shift except for me, because, rightly, no one else cares.)

What I’m getting at, I suppose, is that I have had to learn to allow myself to take it easy. After fretting to a friend over email about not being able to get anything done the night after chemo, he wrote, “You just fought off Chernobyl. Take the evening off.”

Hair Today, Gone Tomorrow

When I was diagnosed with Hodgkin’s lymphoma, my hair was the longest it had been in years. I was growing it out to donate to Pantene Beautiful Lengths program, which makes donated hair into wigs for cancer patients. The irony was not lost on me.

Preemptively, I bought a few scarves and a head covering, as well as some do-rags, inspired by Bodie Broadus of The Wire. I also bought an electric razor of possible head-shaving, as well as for my legs. Since I’m more susceptible to infection, and I’m pretty clumsy, I figured making the switch to an electric razor would be better all-around.

A friend told me about cold cap therapy after my first treatment. I followed up with a representative, but apparently, it’s too late after you already start chemo. I was disappointed, but the MSKCC nurse I spoke to sounded skeptical anyway. I don’t know anyone who has tried it, so I’d like to hear if it actually works.

I read up on message boards about hair loss from ABVD chemotherapy and took this away: Everybody’s different. Hair loss, for most people, started after the second or third treatment. Some people experienced drastic loss and others kept a good portion of their hair. One woman preemptively shaved her head, then realized she wasn’t losing much of her hair at all.

Before my first treatment, I found out why you lose your hair during chemotherapy. I honestly hadn’t thought about the reasoning, since I was mostly worried about the results. Because the chemotherapy targets the fast-growing cancer cells, it also ends up destroying some of your other cells—your hair and cells in your digestive tract.

I started chemotherapy at the very end of April, and I started losing my hair in mid May. It’s now noticeably thinner, but I still haven’t taken the plunge and shaved it off. When it does fall out, if I hold up a strand to the light, I can see the chemotherapy effects on the end of the strand, as the hair gets thinner, then thicker, thinner. (This can be seen in the picture above.)

Right now, it’s a short bob, since I donated about 10 inches of hair in April. My oncologist says hair loss often levels off, so there’s a chance I may not need a wig at all.

That’s extremely good news for me, because my health insurance doesn’t cover hair prosthesis, ruling out a pricier real-hair wig. My boyfriend has suggested that I just go to St. Mark’s Place and get a rasta hat with built-in-dreads. I myself am leaning towards one of those yarn Cabbage Patch crocheted wigs I’ve been hearing so much about.

After browsing the American Cancer Society’s selection of wigs, I have to say, I realized that the majority of them would make me look like a Cold War-era spy. I was tempted to get something totally not me—like a spiky gray wig, but then I might as well go the rasta or yarn route. I chose the Beverly Johnson Mischa wig, which is sitting in a box until I figure out if I need it or not.

Losing my hair is something I focused on early because I knew it was a side effect I could deal with. But I also bought headcovers right away because I know that I won’t be one of those elegant bald women who can boldly pull off smooth dome. My head is shaped funny, flat near the top and punctuated with a freakish bump. My mom claims I was born with it. I’m not saying she’s a liar—I inherited my inability to successfully lie from her—but it really looks like someone dropped me. Like my extra rib, it’s a mystery.

I should note that I’ve never been bald, not even as a premature five-and-a-half-pound baby. I was born with a full head of thick brown hair. (And, according to my mom, that bump.)

I’m a swarthy lady. And it’s finally paying off.

I thought about this as I had my eyebrows and upper lip threaded. I used to go to a place on the Lower East Side near my favorite yoga studio, but since I’m on a hiatus from Bikram yoga for the time being, I go to a salon in my neighborhood, where the women’s gossip involves only men named Anthony or Frank. (I once counted referrals to at least four different Anthonys within one conversation.) I haven’t had to go as often for threading, but it’s the first time I’ve ever been grateful to have facial hair to remove.

I’d been unsure as to whether to bother to get my hair cut again since it’s falling out, but I finally got it trimmed yesterday. When my hair stylist told me she was going to Ohio for the Fourth of July, I was a little jealous, since I can’t travel. I love New York City, but I miss the lazy summer barbecue days of the Midwest. Four months ago, however, I was considering buying a festive American flag headcover for the Fourth, when I had no idea what was in store.

And I still really have no idea what ABVD and cancer have in store for me. Even on dark days, when my eye infection still won’t go away, or when I wonder if it’s finally time to shave my head, I know that if everything goes according to plan, I’ll be better by October. And does anyone know what the future holds? For right now, I hope it’s a good CT scan, eyes that aren’t itchy and some more time with my new chic ‘do. Oh, and a threading appointment to tame my-still rebellious brows.

Square Pegs

I’ve been doing really well with the chemotherapy, as far as side effects go—knock on wood—only to be felled by the common cold. And the virus also brought on an eye infection, so I’ve had to wear my glasses. Not only are they a few prescriptions behind, but wearing my glasses in public is like putting on a mantle of all my middle school insecurities. In my glasses, I’m Superman reduced to Clark Kent.

When I woke up with a sore throat last Sunday, however, freaking out was my first order of business. The one thing I’m supposed to do is stay well, because of my suppressed immune system. I’ve temporarily given up Bikram yoga to avoid being in a hot room of other people’s bodily fluids. (I’ve never gotten a cold from being in a Bikram room, but I don’t want to risk it now that I’m more vulnerable to viruses.) I skip workouts with shared equipment and have been trying to do yoga at home. (By trying, I mean thinking about it, but not actually unrolling my mat very often.)

Avoiding germs is easier said than done in a city of 8 million people. If you have a suppressed immune system, every cough on a crowded train or bus is magnified. I’ve never been much of a germophobe, so until now, I’ve never been aware of how often people cough and sneeze directly on and at you. In one case, I even switched train cars, but that was only after the coughing man produced a razor from his pocket and started shaving and his coughing turned to maniacal laughter.

After doing some internet searches, however, I found message boards where other people who had gotten sick between treatments five and six discussed their experiences. They got antibiotics and were fine, to my relief. I went in to see my oncologist, and she prescribed a Z-pack and eye drops for my infection. Since I was the germy person in the waiting room, and the other cancer patients also have compromised immune systems, I had to wear a mask. Downside: I couldn’t breathe without fogging up my glasses. Upside: I can start a Clinic cover band.

It wasn’t my week. The magazine I worked for had folded a few days before I got sick, leaving me unemployed. I spent my last chemotherapy session emailing my freelance writers and frantically sending in invoices and typing with one hand, because the other had an IV in it.

Wearing my glasses was the final indignity that took me to a dark place. Not having to work was both good and bad. I had time to rest, but I also had time to wallow in self-pity. So I spent a few days feeling sorry for myself, an unemployed writer with cancer who had to wear her glasses.

It might seem strange that that is what I focused on—well, as much focusing as my astigmatism will allow—with everything going on. When I got contacts at age 14, things started turning around for me. I started dating. I went from being a nerdy outcast to a rebellious, somewhat cooler outcast.

“You’re being quiet,” a friend observed on Saturday night.

“It’s because of my glasses,” I replied. “I just don’t feel like myself.”

Another friend turned to me on Thursday and said, “Wearing your glasses really bothers you.”

I suppose I’ll have to deal with all my adolescent insecurities. I was overweight until about 7th grade, and I had a dream this week in which my boyfriend told me I was getting chubby. Even I was surprised by that side effect of being bespectacled.

I took a cardio kickboxing class and my glasses kept slipping down my nose, bringing back traumatizing gym class memories. But only to a point. I’m in much better shape at 35 than I was at 10, even with the cancer and working out less. And no one tried to throw a dodge ball in my face. The fitness center I attend now is much more supportive than grade school gym.

In college, when I got an eye infection, I’d walk around campus without my glasses, unable to see. I would get calls from people I accidentally ignored, asking why I didn’t wave back.

I was like Sarah Jessica Parker’s character in Square Pegs, certain that my glasses are ruining my life.

I think I’ve been complaining so much about my glasses because it’s a “normal” pre-cancer concern for me. It was oddly comforting to have a mundane concern among my newer, scarier health issues.

I really need to get a new prescription. But after my week of wearing glasses, I realized that my insecurities are silly, and I need to outgrow them. I feel I see a little more clearly already.