Heisenberg :: A Pain in the Neck | My experience with Hodgkin's lymphoma (& neuroendocrine tumors)

Halloween Heisenberg

As a former goth girl, Halloween has always been a special time for me. It’s when everyone else finally caught up with what I’d been up to all year.

Of course, I’ve been less goth since my teens and early 20s, but I still enjoy wearing black and listening to Bauhaus and Skinny Puppy, especially in the fall. While some people associate fall with squash and leaf-peeping—a term that I just learned this year and sounds a little lewd for such a wholesome pastime—I break out my goth/industrial favorites around this time. There’s “Release the Bats” by the Birthday Party, “Bela Lugosi’s Dead” by Bauhaus, “Halloween” by the Misfits (technically punk, but appropriate) and, of course, “Every Day is Halloween” from Ministry.

During my mid- to late-20s, I’d often slipped into a lazy tradition of Josie and the Pussycats, though I spent hours a few years ago sewing timely bed bug costumes. I also dressed up for a few years for my favorite Bikram yoga studio’s annual Hot-a-Ween classes. Since it’s hot yoga, finding a costume that you can sweat and move in for an hour-and-a-half is a challenge, but it’s fun, and people get really creative. In the past, I’ve been Pebbles from The Flintstones (with a leopard-print top and hair bone) and a smartwater bottle, though most people couldn’t tell what I was.

But this Halloween had special meaning to me, since I was bald and no longer confined by my hair. An entirely new look had opened up a host of costume ideas. As, I’d mentioned before, I could be Sinead O’Connor, scolding a host of scantily-clad VMA Miley Cyruses. But I’ve known what I’ve wanted to be since this summer, when I ordered a porkpie hat. I would be Heisenberg, Walter White’s alter-ego on Breaking Bad.

I had my hat, and ordered blue rock candy for my meth and glasses. I bought a green button-up man’s shirt and khaki pants and borrowed my boyfriend’s belt and sunglasses for the full Heisenberg effect. And, of course, I had to buy a beard. I couldn’t find a reddish beard, so I had to settle for a dark one that I cut to mimic Walt’s facial hair.

Like my oyster obsession, though, I’d become a little too focused on the idea of my Halloween costume to the point where I was about to take the fun out of it. We are going to go out and we are going to have fun. I’ve never been into weddings at all and I’m really blasé about most holidays, so I suppose the closest I get to event-freakout moments are around Halloween. At least I get a little scary at the appropriate time of year.

I had a tearful breakdown around the night before Halloween, explaining to my boyfriend why I felt like I was getting a little crazy. I’ve been upbeat about it, but I still lost my hair to chemo. The hair loss really doesn’t bother me very much, and I’ve just been keeping my (bald) head down and marching forward, but sometimes this all catches up to me. I was hell-bent on making the most of my baldness on Halloween.

That day, the main place where I’ve been freelancing was finishing up a big project, and I knew I’d be at their office late. Now, this office is the one place—the only place—I wear my wig. I think most people don’t even notice my hair, since I’m not there very often. Still, I don’t really feel like I should draw attention to myself as the bald cancer lady.

So a lot of the full-time office people dressed up for Halloween, but I didn’t—officially. I was wearing my wig, so I felt disguised. It was weird I was wearing a wig, then taking it off to be in costume.

During lunch break, after purchasing a beard, I decided to get my head re-shaved during lunch break to save on getting-ready time. I popped into the salon closest to the office and approached the woman dressed as a mouse at the front desk. I figured this place would appreciate the Halloween-inspired shave.

Despite the scary nature of the holiday, I didn’t want to alarm anyone by suddenly removing my hair. “I need to get my hair re-shaved,” tugging up a portion of my wig a bit. I got my head shaved, and some nice tingly stuff put on my scalp, donned my wig and returned to work, free of the half-inch of hair that had grown in sporadically.

Since my hair had been coming back a little, I wasn’t sure if I should shave my head for Halloween. But I knew Heisenberg would be a popular Halloween costume, and I knew I had to commit. Would Walter White settle for meth that was only 90 percent pure? No! So I would not be some shoddy Heisenberg. Plus, my hair was growing, but all of it wasn’t growing in yet, and it started to look patchy. (I’m happy to report it’s now all evenly growing in, as is my facial hair—just in time for Movember, though I will probably visit the threading salon.)

At the office, as one thing popped up after the other, I felt my Halloween evening slipping away. When I’d noticed cones going up on the street around lunchtime, I realized that the office was also located along the route of the Halloween parade. If you’ve been stranded on one side of the parade while some of your friends and a party are on the other, it’s no fun; I speak from experience.

So I knew I was racing against the parade clock, as well as my own deadline for getting out of the office in time to go out. By this point, I’d calmed down a little bit and decided that as long as I went out in costume—and took photos, of course—it was going to be OK. I just had to get home and into costume.

I didn’t leave the office until 7:15 or 7:30. I said goodbye to my manager as she walked toward Union Square to catch the train and I walked in the opposite direction to take the F home. Then I realized I was blocked in. I was on the phone with my boyfriend, walking back towards Union Square when I saw my co-worker heading toward me, We realized we were trapped. Sixth Avenue was a loss—even the sidewalks were blocked, so the officer standing guard directed us to another street to walk to the next stop.

I finally got home and changed and walked with my boyfriend, who was dressed as a zombie. And I made sure we took photos, including some with my cats. (As you’ll recall, I’m the sad cat lady who spent an entire evening making Breaking Bad-inspired cat costumes.)

We went to a bar where member of my fitness boot camp were having drinks. I used to work out with them more, but as I’ve been easing back in to working out, I think I should be able to count the hoists of a giant beer mug as reps on Fitocracy for now. (Alas, I’m still not cleared for Bikram yoga, otherwise I would have been tightie-whities Walt for class.) Most people realized I was Walter White, except for someone who thought I was a Hasidic guy, with the hat and beard. I really did look more like a little Jewish man than Heisenberg, especially in a photo my boyfriend took, as we had a late dinner.

I got a few calls from the street! “Hey, Heisenberg!” But perhaps the greatest compliment to my costume was that people thought I was a man. After dinner, we stopped by a place where a friend was putting on a Halloween show and we caught a band dressed as the guys from The Taking of Pelham One Two Three—the 1974 version, not the remake.

As I walked in, I spotted a fellow Heisenberg out of the corner of my eye. I was going to talk to him later, but we didn’t stay long because my zombie companion had to work early the next day. But I overheard my fellow Walter White say to his companions, “That guy did an OK job, with the green shirt.” So from one Heisenberg to another, I consider that high praise.

Me As Famous Bald People

I still need to write about my Halloween as Heisenberg hijinks and my biopsy surgery that took place on Wednesday. But in the meantime, I thought I’d share some photo goofiness. When I first shaved my head, I decided to take some photos of me as famous bald people. I took two of these photos in August, and then when I recently re-shaved my head, I took the other two.

Sinead O’Connor, probably the most famous bald lady of all time. She actually has a bit more hair than this in her “Nothing Compares 2u” video. If I had to dress up for Halloween before my head was shaved, I was thinking about being Sinead O’Connor. I’d wear a black turtleneck and carry around an open letter to Miley Cyrus, and I’d scold scantily clad girls in Miley costumes from the warm comfort of my turtleneck. I may actually go see Sinead O’Connor on Sunday. People will think I’m a superfan!

Sigourney Weaver from Alien 3. I’m pretty sure I’ve seen Alien, although I get it mixed up with that V TV movie. Anyway, this is me as Sigourney Weaver in that film. I didn’t have any dirt to put on my face, and I was just waiting for my boyfriend to get ready so we could go to the Museum of the Moving Image and not fighting a battle against aliens, so I look less rugged.

Kojak, with a lollipop. I didn’t have a fedora, so I just relied on the raincoat, sunglasses and sucker to carry off this Telly Savalas look. I had gone into the bank to get a Dum Dum and had collected several lollipops, but I ate them. I’m eating one of those ginormous all-day suckers here (grasshopper pie-flavored, if you’re wondering.).

Walter White, my summer cancer anti-hero. I started watching Breaking Bad in July and caught up just in time for the premiere of the final six episodes. I was Walter White for Halloween. My boyfriend says I look like a little Jewish man (with the beard, not all the time, because that would be weird). I wished I could have found a more reddish beard. Alas.

Heisenberg, Walter White’s alter-ego. Actually, I was Heisenberg for Halloween, complete with porkpie hat, blue rock candy meth and sunglasses. I plan on writing a whole post on my Halloween, but for now, here are the pics of me as Heisenberg, who is in the empire business.

Make Your Own Cat Tortuga Costume for the “Breaking Bad ” Finale

Walter White’s dark deeds are far-reaching indeed, and have crept into my very home. On Sunday night, the chain of destruction he’s set off will unwittingly affect the lives of two unsuspecting felines, who are dressing up for our Breaking Bad finale party. Well, technically, I’m dressing them up. But if there’s one thing I learned from the show, it’s that sometimes the innocents must suffer to achieve your dreams.

That’s the lesson I was supposed to take away, right? Is it that, or something about the road to hell being paved with good intentions?

In addition to the finale party, I’m getting a jump on my Heisenberg-themed Halloween costume. Cancer hasn’t been fun, but it really has been the best thing that’s ever happened to me Halloween-wise. I might shave my head every October. As I mentioned before, I kind of don’t mind being bald, I was never that great at having hair anyway, and it’s made me even more of a Breaking Bad fan.

Cat lady alert: I already have a tie for cats I bought at Target years ago, so one cat can be Saul Goodman. The other cat is going to be La Tortuga—specifically the head of Danny Trejo’s character mounted on the tortoise. Trust me, it will be the most adorable re-creation of a disembodied head mounted on a tortoise ever.

This most likely will be a little upsetting for the cat, but think about how the Tortuga DEA informant felt once he saw that big knife. Or what about the panic attacks and mental trauma poor Hank suffered after this incident?

Since I’ve clearly tried to dress up my cats before, I’ve found that they don’t mind the tie, because it’s lightweight and around their necks, and they already wear collars. They don’t like to wear things on their heads, and it seems that they’ll wear this costume for at least a little bit. The clever cat knows that I will eventually set her free if she will sit still awhile for photos—struggling only prolongs the indignities. So she cooperates for a bit in hopes that the ordeal ends swiftly, and with liver treats.

Below are instructions to create your own Tortuga cat costume.

INSTRUCTIONS

You will need:

Tape measure
Fabric pen
Green felt. I used an 8″ x 12″ piece, because that cost $3.10 at the local fancy knitting/yarn/craft store. A yard, by the way, is $76. Those are meth kingpin prices. I had stood up too fast while leaning over looking at the smaller pieces, and I’m prone to vertigo right after chemo, and the blood thinners aren’t helping with that. I was still a little dizzy when she told me this, and I thought I should pass out when she told me the price to demonstrate the reaction that price deserves. (Maybe she meant 76 cents?) But I’m not Skyler White. I can’t feign labor or physical trauma to get out of a sticky situation. So I just bought the little pieces, because I didn’t have time to go elsewhere.
You can use my turtle pattern that I made up, or you can draw a better tortoise of your own. Mine isn’t very precise—I just cut it out as I went along. Precision isn’t my thing. I’m no Gale Boetticher, with a fancy notebook (and karaoke skills).
Scissors
A tiny piece of white felt, for the eyes. Or you can buy googly eyes at a local craft store.
Tinier pieces of black or brown felt for the eyes.
White thread and dark thread if you’re sewing on the eyes, or glue if you’re using googly eyes.

1. Measure your cat’s neck with the tape measure for the neck hole. If your cat is trusting and purrs while this happens, you might feel a little guilty. But ask yourself: WWWWD? (What Would Walter White Do?) He would pause for a second, and then manipulate that trust; that’s what he would do. “Nothing’s going to happen, good buddy. This is all going to turn out well for you. For both of us, really. Well, okay, just for me.”

2. Use my pattern and pin it to your felt as a cutting pattern, adjusting for the size of your cat’s neck. You’ll want the neck hole to be big enough to slip on, but not too big. (Mine’s actually a bit too big.) But keep in mind, if your cat has any sense, it will try to run away from you and your turtle costume, so make sure it’s fairly easy to slip on. Or use your fabric pen to trace the pattern, or a better tortoise shape, before cutting.

3. Cut out two tiny circles of white felt for your tortoise eyes. Or, if you’re using googly eyes, just glue them on.

4. Cut out two tinier circles of black or brown felt for your tortoise eyes.

5. Sew the white felt circles on to the turtle face with the white thread.

6. Sew the dark felt on top of the white circles to complete the eyes.

7. Capture your cat, slip the tortoise over its head and take plenty of photos.

For a more rigid tortoise:

After my tortoise was complete, I noticed it was a bit droopy. For a tortoise with more shape, you’ll also need:

A second piece of felt. I used brown felt that I already had since I don’t have millions stashed in trash bins in the desert and couldn’t afford more green felt.
Chenille sticks or pipe cleaners.
Green thread. Ideally, you would have the right shade of green thread. I didn’t. But what has Breaking Bad taught us? When life takes away your pseudoephedrine, steal some methylamine. So I just used a different shade of green thread.

In step 2, pin the two pieces of felt together and cut them at the same time.

After step 6, you’ll sew the chenille sticks into the edges of the tortoise, between the two pieces of felt. Then you capture the cat.

ADDENDUM: Someone pointed out that for maximum accuracy, the tortoise shell should say “HOLA DEA.” You can add this with puffy paint or a paint pen, or you can embroider the message onto the shell.

Though I have the potential Saul costume, a friend had been lobbying for Todd as a cat costume. Since I’d spent most of my evening making cat costumes, I thought, “Why not devote my entire evening to making Breaking Bad-inspired petwear?” So I made a Vamonos Pest nametag.

Today, I will don my porkpie hat and watch the finale, though I will shave my head again before Halloween. In fact, the show provides a lot of costume ideas for a variety of medical conditions. When I spotted a girl in a wheelchair with a painful-looking broken leg contraption at a show recently, I thought that she could go to parties as Hector Salamanca. Crutches? Flynn/Walt Jr. Off crutches, but still limping? Hank.

Meth empires cause a lot of fights, so if you’ve been injured in a brawl—obviously, “you better call Saul”—and then you can go as beat-up Jesse, Walt or Saul. (Alas, my blood thinners rule out brawling, so this doesn’t apply to me.) Pregnant? First few seasons Skyler. Klepto? Steal things from your host’s home in character as Marie.

And of course, if chemo made your hair fall out, be Walt or Heisenberg. And make your cats your victims, er, accomplices.

Good News (Mostly)

Forget Christmas and even Thanksgiving, despite the latter’s delicious stuffing (quite possibly one of my favorite foods in the world). Memorial Day, the Fourth of July and Labor Day are my favorite holidays. I love summer days when I’m expected to do nothing but enjoy myself. No pressure to buy gifts, no snowy commutes over long distances.

My love of summer holidays started when I was about 10, and I created my own little rock garden in our yard. Since then, I treasured these gifts of a day off from work or school. Often, I don’t even have plans, but just let the day dictate what I’m going to do.

Today is a gloomy, gray and rainy—the perfect day to stay in and catch up on the blog. I’ve had a flurry of good news lately.

More freelance work. I may have some more steady freelance work! I can’t tell you how much having some more work and something steady to do has done to lighten my stress levels. Gone is the gnawing feeling in the pit of my stomach that nagged me every second of the day to hustle, to look for work to do something and to never take it easy. I felt as if I were spinning my wheels. I’ve been exhausted and depressed, and I’m so happy to have some productive things to do for a change.

Possible (probable?) health insurance. According to United Healthcare, I’ve been approved for insurance for September. I’ll believe it when I receive my new ID number in the mail. I realize this sounds cynical but had I not called to check up on Anthem, who told me I was all set to receive COBRA, I would not have had insurance in August.

Care packages and kind thoughts. I received three care packages in the mail this week, full of yoga goodies, biscuit mix (and jam) and clothes and accessories—plus a gift card. But what means more than anything are the thoughtful notes and cards. And I’ve received emails from others who have been through cancer or grappled with insurance woes, offering their own stories and an ear to listen. I have a great support system in place.

Veins are holding up. I have two more treatments to go, but the veins in my arms are hardening. My oncologist and I discussed a PIIC line over a port for the last treatments, but it seems as if my veins may hold up for the rest of treatment. I just need two more!

I have a Halloween costume. Heisenberg, of course. I want to order blue rock candy for my meth, but I’m afraid I’ll eat it all before the end of October.

The meh news? My last PET scan haunts me. The doctors like to see the cancer gone or mostly gone after eight treatments. While it’s going away, it’s not going away very fast anymore. So instead of the end of treatment at the end of September, I could be looking at more treatment. Either more ABVD, the stronger escalated BEACOPP, radiation or just waiting to see if it comes back stronger. I’m told not to worry, and I know worrying won’t help.

I have a rash again on my chest, where it all started. But I try not to think about what this all might mean: I might not be very close to being finished with cancer after all. Either way, I can’t even get another PET scan or see the doctor until my new insurance number arrives.

But even if I have more treatment ahead of me, I know at least I will get better. My prognosis is good. Sure, I miss working out. I miss not having to avoid people who might possibly have the slightest bit of illness. I miss ordering salad instead of fries. I miss not having cancer.

I actually don’t miss my hair. I don’t like wearing a wig. I do it more to make others comfortable, but usually I let my bald head go uncovered if I’m not in direct sun. Except for yesterday, when I wore my skull scarf to match my skull shirt, and I looked a little like a summery, deranged pirate as I took in two Pacino films at the Museum of the Moving Image. I wanted to punctuate my pirate themed day with a tropical drink at the cheesy palm tree bar, but that will have to wait.

Only a few things are on hold, not my entire life. Until I feel whole again, I have plenty to be thankful for, as the summer winds to a close.

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.