Breaking Bald: A Hair History

Being bald is pretty great. I’ve always wondered why one of my friends, who ordinarily would have a full head of hair, has shaved his head since college. (Though there have been a few periods where he’s had hair in that time.) But now I see the appeal.

Sometimes, I forget that I’m bald and I startle myself when I walk past a mirror. My boyfriend envisions me calling the police. “Hello? There’s a weird bald lady in my house! But I can’t find her!”

I just did yoga, and I didn’t have a ponytail in my way. My head is nice and cool—though unprotected from the sun. In fact, I have a barely noticeable tan stripe on my head from where the part in my hair was located. It’s like I’m Pepé Le Pew or wearing a Cleveland Browns helmet. (Like most of the Browns, sadly, I’m also not very good at football.)

As I mentioned, I’m not someone who cries over haircuts. When I donated my long hair earlier this year, the stylists seemed concerned and checked on me after they took off about 9 or 10 inches. (I knew then about my diagnosis and that I had more hair to lose in the coming months.)

This Sunday, as my boyfriend sheared off my hair, he asked me several times if I was OK. He also gave me a glass of whiskey.

If there’s a time for having your allotted occasional alcoholic beverage during chemo, I suggest you have it while your head is being shaved. And I recommend whiskey. It’s immediate and makes you feel warm inside.

But once my head was shaved, I realized I liked it. It’s not even the worst haircut I’ve ever had. That was probably when my mom decided to cut my hair into a short bob and perm my hair when I was in sixth grade. The result was a hairdo that someone said looked like a spaceship. A fuzzy flying saucer.

That was just the beginnings of my tress troubles. In the early 1990s, when I was in eighth grade, my hair was full of split ends, so I went to someone my mom worked with at the time, a girl who also cut hair. This girl’s hair was curled and teased on top into a heavy metal dome—a little bit like the blonde in this picture, but with a slight spiral perm to it. It was structurally magnificent, but not the look I was going for. I wanted long, beautiful completely straight hair—like Sebastian Bach of Skid Row, as long as I’m on the subject of metal hair.

Anyway, she layered my hair—a lot—to get the split ends out. And since I didn’t have enough L.A. Looks to make my hair big, I had hair like Chris Robinson of the Black Crowes in the “Hard to Handle” video. (My teenage life centered around music videos and references.) Watching the video now, his hair looks fine. But it was not OK for 13-year-old me.

I silently and constantly fretted about my hair, as only a young teenage girl can, and waited. (Like broken hearts, there’s often not much you can do for a bad haircut, except let time heal.) Once it grew out a little, I could finally spray my bangs into a big, stiff wave, keeping the lower bangs loose over my forehead. You were supposed to use a curling iron to curl the top bangs back to create this tube of hair that curled backwards, then spray it up in place. I was too lazy to use a curling iron and make it look like this, so I kind of fashioned my own side wave and sprayed it into place.

After that, I made pretty wise decisions regarding my hair. Well, for the most part. I wanted to Manic Panic my hair a crazy color, but it’s dark brown, so nothing would show up and I was too scared to bleach it. By my junior year, I had moved on from my hair metal phase. (So had the rest of the world, post-Nirvana.) After a summer of painting all my furniture black, listening to the Cure and Nine Inch Nails and buying a pair of combat boots, I had become goth.

I tried dyeing my hair black with a temporary dye, but it wasn’t black enough. (Surely not as dark as my angst!) So I used permanent dye. Over and over again. And then I didn’t want black hair anymore by that spring. But permanent dye is pretty permanent, as it turns out. The salon tried to bleach it out but it worked only at the top near the roots—not the parts that had been dyed black so many times. Until the middle of my freshman year of college, I had an orange band of the bleached part slowly growing out through my hair.

Once that finally grew out, I dyed it black again during my sophomore year of college. (What’s that definition of crazy again? Doing the same thing and expecting different results?) This time, when I wanted to go back to brown, a stylist bleached chunks of my hair to make it look more like my natural color, and this worked much better.

I sometimes dyed my hair that reddish late ’90s color. In my early twenties, I dyed it bright red and purple, but it was temporary dye that lasted only a few weeks and it didn’t show up much on my dark hair. No one seemed to notice much, except for my boss. When she walked into my cubicle, she said, “Oh. You dyed your hair.” To which I replied, “Yes, it’s Pimpin’ Purple.” (A reply that now makes me cringe and laugh. Oh, to be 21 again.)

The following year, apparently no wiser, I got gum in my hair. Not at the tips where it might make sense that a grown woman with no kids would find gum. It was at the top of my head, near my hairline. I chewed gum all the time, and sometimes, I would take it out of my mouth and just put it somewhere before falling asleep. (On my nightstand, for example.) I’m still not sure how it ended up in my hair, but it seems inevitable now. I cut it out, and just kept a hair clip in place to hold that piece down—otherwise it would stick straight up. Like that orange band in my hair, the clip moved as my hair grew.

Since my sophomore year of high school, though, my hair has pretty much been the same: Long and brown. I briefly experimented with bangs in my late twenties and that was a terrible mistake, looking back at old photos.

Until my recent hair donation, I was a huge fan of long hair, and I never wanted short hair. (Certainly not this short.) But I got a lot of compliments on my chic bob. I said thank you and I liked the bob, but vowed to return to long hair soon.

Now, I’m thinking that maybe I wasn’t into short hair because I hadn’t gone short enough. Reflecting on my hair past, I’m not sure if I should have long hair—or hair at all. I don’t use fancy shampoos or gels or sprays. I rarely used a blow dryer. It took too long, especially on my thick hair.

When I did get compliments that my hair looked nice, here’s my secret: I had brushed it that day. I sometimes didn’t bother. (If you’d seen my childhood dolls, you’d see the pattern started early.)

Often, when I found a troublesome knot or tangle, I’d just cut it out, not having to answer to anyone about it until a stylist asked me why a chunk of my hair was missing. I always felt a little sorry for my stylists, when they asked me my hair regimen. “I wash it and I sometimes brush it.”

Now that I’ve been bald, there’s no telling what I’ll do once my hair grows back and it gives me trouble. I know where the clippers are, and I’m finally free of my hair—or maybe it’s finally free of me.

How Walter White Became My Unlikely Hero

When I watched the first of the final eight Breaking Bad episodes on AMC last night, I had something in common with Walter White. We’re both bald.

Well, I guess we have two things in common, as I learned in the middle of the show (spoiler alert): It turns out Walt is going through chemotherapy too. I feel as if Walt and I have been through a lot together in the past few months, as he’s become somewhat of my cancer hero—or antihero. (Though I’m no Gale. W.W. is far from a shining star in my eyes. And perhaps Gale is the most obvious example of the dangers of loving Walter White.)

As everyone turned against him as the show progressed—from his wife to his former business partner to viewers of the show—I still felt somewhat of a cancer kinship with him. He was beginning to lose me in season five—but as we see so often with Jesse Pinkman or with Skyler—just when I thought I might be done with him, Walt pulled me back in.

In February, I was diagnosed with Hodgkin’s lymphoma, and I’ve been undergoing chemotherapy at Memorial Sloan-Kettering Cancer Center since April. In June, I started watching Breaking Bad, after hearing hype about the show for years. The show’s premise—a high-school teacher who makes crystal meth after a fatal lung cancer diagnosis—seemed timely.

Just as everyone predicted, I became addicted. In fact, when I watched all of season four at Lincoln Center during a recent Breaking Bad marathon, a fellow fan confessed he would sometimes skip work or lie to his friends about having plans when he wanted to stay home and watch multiple episodes.

As I feverishly caught up on the show in time for the new episodes, Walt became a cancer companion of sorts. There are the physical effects of the chemotherapy—the nightstand full of medications, the red urine, the PET scans—but it’s the psychological effects on Walt to which I could relate.

Anyone who has ever received a bill for cancer treatment has probably thought that they need to make more money—fast. Even with insurance—something that I may be losing at the end of the month—the bills for a biopsy, medications, scans and chemotherapy add up.

Obviously, making and selling drugs is no joke. But if you could do something to make enough money—even if it were illegal—to not worry about medical bills, would you?

I might. As I’ve mentioned before, it’s as if, from time to time, the snakes from the medical caduceus symbol slither from their post and curl up in bed with me and hiss into my ear, reminding me of the expense.

Fortunately, for society’s sake, I have no illegal talents. I’m also a terrible liar and a goodie-goodie at heart, so I’m not cut out for a life of crime.

The thing that resonates with me the most about Walter White, however, is his anger, always bubbling near the surface, and his need for control, which drives him as much as—if not more than—his love for his family.

Walt’s anger is always present, constantly bubbling near the surface. After his diagnosis, he tells off his boss at the car wash and beats up a teenager for making fun of Walter Jr.’s cerebral palsy. Most of us can relate to wanting to do these things—and a cancer diagnosis is just the thing to push you to actually do it. You often want to have a tempter tantrum over how this isn’t fair. The smallest things can set you off, because you find yourself thinking, “This happened and I have cancer.”

Sometimes, I find myself walking around daring the world to piss me off—just for the release of pent-up anger. While I haven’t blown up a drug den or even thrown a pizza on a roof, I did find myself hanging on to a cab’s door handle and screaming at a startled driver when he refused to take me to Brooklyn after my biopsy surgery in Manhattan. It was during the change in shifts for cab drivers, when they decide whether you’re on their way home or not. After being turned down by one cab, I vowed to not let it happen again. “I just had surgery and you won’t take me to Brooklyn!” I screamed, pounding on his window. If I had been close enough to the open part of the window, I would have tried to force my upper body into the cab, new stitches along my neck or not.

Most of my anger is reserved for insurance companies and bureaucratic entities that are out of the grasp of my wrath. It make me feel helpless and as if I don’t have control—which brings me back to Walt.

But pride and a need for control are what really drives Walter, more than anything, and that’s when he started to lose my sympathy. Had he accepted the offer of his former business partners, he could have avoided this meth mess completely. We finally learned this season that he’s always been haunted by his decision to sell his share of a company now worth billions for $5,000, and that’s when his reluctance to quit the meth business comes into focus.

Yet I relate to his need for control in the face of cancer. To me, cancer has felt like a betrayal of the body. Your own cells are going renegade. When you have so little control over your own body, then what do you have?

You want to be tough. I’ve assured people over and over again that I’m fine, that this is no big deal. You put on your badass black hat or your wig and you become Heisenberg, your alter ego who is always strong and in control and unfazed. Who doesn’t want to assert, “I am the danger,” and “I am the one who knocks” when you feel as if you have very little control?

As Walt sits in a hospital gown and socks for his PET scan—a test that determines the state of your cancer, whether the treatment is working or whether you’re in remission—he’s still struggling for control. As a fellow patient spouts clichés and grapples with his diagnosis aloud, Walt goes off—again there’s the anger—and asserts to this poor stranger that he’s in control.

During one of several Breaking Bad discussions this past weekend, someone observed Walt has become the cancer. He’s the danger, but as the body count piles up and the consequences of his actions become increasingly dire, he still doesn’t have the control that he wants.

In spite of all of Walt’s transgressions, I still wanted him to be happy. I often find myself defending unlikeable characters. So I was disappointed when Hank found that copy of Leaves of Grass, after it seems that poor Walt had only a month of what he finally wanted. And now his cancer is back—as is Heisenberg.

I am now bald. I have a black hat, though it’s more Holly Hobbie than Heisenberg. Am I the danger? Inadvertently. I almost set my kitchen on fire while baking cookies and two of my lab partners in high school science classes almost set our stations on fire. (I wasn’t responsible, but I still feel as if I was an accomplice.)

Before the premiere of the new episode last night, my boyfriend shaved my head. A lot of people shave their heads early in the chemo process, but my hair was so thick that the thinning wasn’t noticeable until this week. Within the course of a week and half, my hair suddenly looked really thin. It was time. And what better time than before the return of Walter White?

I didn’t cry, though I’ve done my share of it over the past several months. But I’ve never been one of those people who cry when they get their hair cut. It will grow back—though in this case it will take longer.

Right now, I’m waiting for the results of my most recent PET scan. If everything is on track, my last chemotherapy appointment will be September 27—two days before Breaking Bad comes to an end. Walter White’s story and my cancer journey will end together. I know better than to expect a happy ending for Walt, though I hope for one for the end of my own story.

 

‘What’s That On Your Head? A Wig!’

Last month, I optimistically returned the wig I’d ordered from the American Cancer Society’s TLC catalog. Everyone seemed to think I’d be able to keep a good portion of my hair.

But within the past week, my head has been shedding like a tree in autumn. Big parts of my scalp are visible. I can’t look in the mirror without thinking of Donald Trump.

It’s not even the hair loss that bothers me so much as the fact that I paid $10 to ship my wig back, and now I have to wait again for it to arrive. My cheapness is helping to distract me from the real issue, which is that very soon, it will be time to shave my head.

Part of me wants to dramatically storm into a salon and grab clippers and shave my head like Britney Spears, circa 2007, or like Amanda Bynes…now (sigh). But, thankfully, I am not a troubled starlet. Yet the temptation is great to re-stage the famous tabloid photos.

As I wait for my wig to arrive, I might go ahead and purchase one in the interim from a wig shop. My insurance doesn’t cover a hair prosthesis, so these won’t be the fancy wigs, but they will be an improvement compared to the only wig I currently own, a purple asymmetrical bob from Ricky’s. I will probably forgo wearing wigs entirely, except for professional situations.

I’ve been wondering why I’ve been so reluctant to tell people I have cancer. Part of it is that it’s competitive enough to find a job without adding a disease to the mix. I have a link to this blog on my portfolio website, so I’m not hiding anything. And I’m well enough to work. But like a wounded animal in the wild, I feel as if I can’t show any weakness. I guess living in New York City for awhile can make you feel that way.

But then I wonder: Is this a weakness or is it a strength? Perhaps I just need a change in perspective.

This hair loss, in a way, is somewhat of relief. I have cancer, but I’ve been pretending that I don’t. I feel good, but I feel pressured not to make people worry, assure them I’m OK. And being bald seems like a big physical announcement: I have cancer. It forces me to admit that I’m going through something and though I’m doing well, it’s a big, difficult and complex experience.

With my hair so wispy and thin, I’m eager to shave my head, as I await my wig and stand. The idea of putting my hair on a faux head has fascinated me since I was about four or five, and we took a trip with my great aunt. (Technically, she was my grandfather’s cousin.) One of the things that impressed me most about the trip was that my mom and I shared a room with my aunt, who wore a wig. My mom told me this with explicit instructions not to stare and was very adamant about this, so I remember sneaking furtive glances at what I had previously believed to be my aunt’s hair sitting on the hotel dresser, on a stand.

My widowed aunt didn’t like children, something that was also imparted to me at some point. I loved visiting her because she had two cats, and I’ve always loved cats. I was pretty well-behaved and I spent most of my time around adults, plus I was pretty shy, so I think she liked me well enough. Until around the time I was eight and we were having breakfast before a family wedding. For some reason, I was playing with my glass of milk. I had something either that I was putting around it—a bracelet?—or maybe I was making a small toy dance around it. My mom told me to stop it, and I didn’t. And that’s when I knocked over the entire glass of milk into my aunt’s lap.

I knew that this was the very worst thing that could happen—that she, of all people, was the worst possible person to have been in the milk’s trajectory. This is why she doesn’t like children, I thought. And I saw her point. I knew I had confirmed her worst beliefs.

I think my interactions with this aunt were so burned into my memory because I sensed my family’s constant nervousness that i would upset her. And then the worst happened—I was a child goofing off and I doused her with milk while she was dressed for a wedding. But I think there was also a relief—our fears were confirmed, now what?

It’s like that, for me, with cancer too. While it’s far from the worst type of cancer, it’s still cancer, generally agreed to be one of the worst things. So, I have cancer. Now what? I get through it and move on and hopefully emerge stronger. We often live in fear of something bad happening, a series of “what ifs.”

Even though I try to stay calm and live in the moment, while looking for work and dealing with Hodgkin’s lymphoma, I have become a full-time worrier. My boyfriend continually reminds me to not worry about things that haven’t happened yet.  It’s a twist on the quote: “Worrying is like praying for something you don’t want.” These words that resonated with me so much when things were good are harder to remember when life gets a bit tougher.

I don’t know if my aunt ever forgave me for that long-ago breakfast transgression. I don’t think so. I will take her horrified look as milk pooled into her lap with me to the grave. She passed away years ago, and I hope she knows that I was sorry—and I hope she never caught me staring at her wig.

Right now, I have two cats and a wig stand of my own. People think I don’t like children, but that’s a misunderstanding. I never really hung out with other kids much outside of school and I was an introvert, so my interactions with children are an extension of a lifelong social awkwardness that started in kindergarten. I hope I don’t inspire that same apologetic feeling that my family felt around my aunt. Kids are allowed to spill milk on me and even ask about my wig. I will respond with a rendition of this song from the B-52s.

The Best of Times, the Worst of Times

Charles Dickens began A Tale of Two Cities with, “It was the best of times, it was the worst of times…” I couldn’t tell you anything else about the rest of the novel. So I guess it’s fortunate that he put the best part right at the beginning like that, so I wouldn’t have to continue reading.

I’m a bookworm and goodie-goodie who always did my homework and the assigned reading. But when that book was required for 10th grade English, I just couldn’t get through it. It was my mom’s copy of the book, and I don’t think she read it either. Maybe I had a cursed volume. Judging from her high school copy of Much Ado About Nothing, in which she scribbled out the word “ado” to show her sentiments about the play, I would say I inherited her aversion to Shakespeare as well.

But the other day I found myself thinking about this opening phrase. While Dickens is talking about the time around the French Revolution, those lines can refer to almost any time. High school, for example.

There have been some good things that have come from this cancer diagnosis—the outpouring of support from friends and family, my realization that I need to be more confident and fearless.

But this will obviously not be the best of times. With the cancer diagnosis in February and the job loss this summer, 2013 really hasn’t been my year so far. Irrationally, I hope that this double dose of bad luck means only good things ahead, though I know there’s not a finite amount of sad things that can happen.

I wondered aloud if I’d appreciated what I had before the cancer diagnosis. I think so. I knew things were good and was grateful for what I had. I appreciated my good health and my great job.

In Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s, one of the young people with cancer notes that she felt she appreciated life. She didn’t need cancer to teach her a life lesson.

But then again, cancer is a cell aberration, not something you get because you need to learn something. Not that I’m saying you shouldn’t try to learn something from every experience.  Still, before cancer, I lived for the moment and mindfully and experienced daily gratitude, all the things that you’re supposed to learn in yoga. Now, I feel that is less so, but that’s temporary.

In fact, everything is temporary. I can’t even remember where I heard that the bad doesn’t stay forever, but neither does the good. Was it a yoga class? Something I read? The last part haunted me—even good things are fleeting. But we know that.

This weekend has been particularly hard for me, and I’m not sure why. Maybe because, as of Friday, I’m two-thirds done—eight treatments down, four to go. It didn’t bring with it the jubilation the halfway mark did. With the possible end in sight, I’m getting impatient. Only two more months to go, yet two more months to go. I’ve become a full-time worrier, when I know it doesn’t help. I worry about Wednesday’s PET scan. What if it turns out I need more treatment?

Physically, I’m starting to feel the effects of the chemotherapy a bit more, since it’s cumulative. I have an appointment tomorrow with a podiatrist to get my toenails lopped off to avoid infection. They’ve been separating from the nail bed and turning various colors, and it’s best that they go, for now. I’m also on some new medications to keep me from getting infections: Bactrim, Acyclovir (an anti-viral) and Fluconozole.

My hair is still falling out, and it’s noticeably thinner.  I was hoping it could hang on for the next few months. Knowing my deep love of pop culture and my current obsession with Breaking Bad, my boyfriend suggested I could time the shaving of my head with the premiere of the show’s final eight episodes next Sunday. I have to admit, that prospect cheers me up immensely. Shaving my head to be a Walter White superfan? I’m in!

I have a weird mark that looks like a bruise from one of my bra straps, and my doctor says that’s common with ABVD—a scratch or skin irritation becomes a brown mark on your skin. I have another on my arm from carrying a plastic bag yesterday.

I bruise like an overripe peach, yet inside, I feel myself getting bitter. Plus, I’m actually physically hardening inside. My veins are hardening from the chemotherapy drugs. The good news is that my left arm hurts a bit less, but now my right arm feels bruised, and it looks red and irritated. So I am getting physically tougher in some ways while falling apart. I’d like to get through these next four treatments intravenously without needing a chemo port installed.

Then the bargaining begins. OK, I’ll shave my head if it means I don’t have to get a port. Who, exactly, am I bargaining with? Life doesn’t work that way.

But it’s the bitterness that makes me feel the worst. My temper has been unbearably short. I know better than to act like this. I hate that I sometimes have to struggle to focus on the good now.

I will get better. This is temporary. Happy events have happened this week, including the birth of my best friend’s baby. If I focus on the bad, I’ll miss out on the good.

So this won’t be my best summer. I’ve never really had a bad summer, since it’s my favorite season. Even the summer of 1993, when I spent the summer painting all my furniture black, was OK.

I have some amazing things left to do and experience in the next few months. Maybe that’s my lesson, for today, at least—not letting the negative cloud the good.

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.