A Love Letter to Working Out

I’ve started this post at least half a dozen times since I started my blog. It seems odd to be writing my love letter to working out when the most strenuous thing I’m up for is walking. My left arm is still a little immobile from phlebitis. I have a leukapheresis catheter in my chest that I have to be careful with, and I have a blood clot in my lung that leaves me winded after a flight of stairs. My hemoglobin is low, so I’m often and easily tired. I haven’t been able to work out for nearly a month, since before I went in for the last round of high-dose chemo.

Yet I still feel strong. Throughout the treatment—and now, more than ever—I’ve been drawing on what I’ve learned from my workouts and my yoga practice.

Physically, I did get some compliments on my blood pressure, at the beginning of treatment. Years of trying to perfect the savasana “dead body pose” in yoga helped when I had to stay perfectly still for scans and my radiation mold measurements. I will have to stay in good cardiovascular shape, especially as all this chemo and radiation takes a toll on the heart and the lungs.

But I think I can say that without yoga and fitness classes, it would have been a lot harder to get through all of this mentally. While I thought I was building muscle and flexibility, I was actually becoming stronger in ways I didn’t realize.

In December 2013, when I noticed a small bump that turned out to be two dislocated ribs, I was irritated that I’d have to modify my fitness routine for a month or two. That, of course, has turned out to be more than a year, since those ribs were dislocated by Hodgkin’s lymphoma tumors. I’ve had to take time off from working out, adjust my routines and generally change everything.

In between treatments, when I receive the OK to work out, I do what I can. Sometimes I wonder if it’s worth it, but when I think about how working out has helped me overall, I know that it is. The muscle tone will come and—in the next few months especially—go. But the benefits go way beyond that.

Change is often difficult, but it’s possible. This was probably the first thing I ever learned. I’ve said this before, but I’m not naturally a physically active person. I was a chubby kid and always the last person picked in gym class. Very last—after the kids with asthma and injuries.

It wasn’t just that I wasn’t fit—I’m also extremely indifferent to any kind of sporting competition. That won’t change. I will spend 10 minutes agonizing over a Scrabble word, but I lose interest in winning any kind of sport immediately. You want the ball? Have it. The promise of being left alone is enough for me to surrender. The opening scene to the old MTV cartoon Daria, where she refuses to hit the volleyball and her teammates eventually collide to cover for her—that is pretty much the animated version of me in gym class.

Yet I started working out on my own in high school, first with Cher’s A New Attitude step-aerobics video. (Her outfits are pretty fantastic.) I discovered I kind of liked working out, and eventually found other things I enjoyed—yoga and fitness classes. I’ve tried to make working out part of my everyday routine. Even though I skip a few days, intending to work out every day helped me to at least do it about five days a week.

I’ve also never been a morning person, but managed to become someone who regularly woke up at 5:15 or 6 am to go to yoga or boot camp class. I found I enjoyed this thing called morning, which I’d avoided for years. Also, it was helpful to roll getting out of bed and working out—two things I tend to put off—into one fell swoop of determination. So the night owl and the last person picked in gym eventually learned to be the early bird at class.

The hardest part is what makes you stronger. Those last few seconds in standing bow or being in a plank sometimes seem impossible. That’s when the instructor usually says something encouraging like, “These last few seconds are where the change happens!” Or: “This is the hard part, but here’s where you’re building strength.”

I’ve thought about these words a lot as I near the hardest part of my treatment. A few months of dislocated ribs turned into six months of chemo, which turned into more than a year of chemo and another three to six months of recovery. The most difficult part still lies ahead. Heading to yet another appointment or sticking on an AquaGuard over my chest catheter before showering, I’ve cried and declared, “I don’t want to do this anymore,” and sometimes, “I can’t do this anymore.” I’ve been sliced open and poked and poisoned for a year now, and I’m tired.

But I don’t have a choice. I’ve learned that just when you think you can’t do something anymore, that’s when you need to power through. It’s time to cue “Eye of the Tiger” and do this. The hospital bedside yoga and laps around the floor, dragging my chemo pole with me, will be my one-armed Rocky pushups. Right after the stem cell transplant, I’ll be physically weak and in a bit of a mental fog, but overall, tougher.

Patience. At this point, after a year of treatment, I’m impatient to get this over with already. A month in the hospital seems like an eternity. But I know that things always seem longer at the outset. Sometimes it’s just 45 minutes of boot camp or an hour-and-a-half of Bikram yoga, when I’m not feeling particularly ready to push myself. Every now and then, in the first few minutes, I despair. How am I going to make it through 80 more minutes?

But I do. I had the same feeling when I signed up for a 30-day Bikram yoga challenge. When I marked off those first few days, the month stretching out before me seemed so long.

I have to be patient. I have to draw on the patience that comes from working on the same 26 poses in Bikram yoga. Or the patience from a Kundalini breathing exercise. I can do this.

Encouragement and support go a long way. Almost every day that I’ve worked out or attended a yoga class, I’ve been told that I could do things that I often didn’t think I could. (Sometimes, I felt absolutely sure I couldn’t, but did it anyway.) Eventually, I started to believe it. That’s been helpful for when I’ve had to endure being poked for multiple IVs that give me the heebie-jeebies or sit still for another round of tests.

People in classes have always been supportive—and that also extends beyond the fitness center and yoga room. I’ve met some great friends through working out, and I’ve received such nice messages from my boot camp pals, people I’ve met through yoga and the barre3 community.

Once I finish my hospital stay, I know it’s going to be a long time to regain my physical strength. I’ll be easily tired, and it will be months before I even get back to “normal,” before I can even think about working out. But thanks to fitness and yoga classes, I have the strength, patience and support that I need until I am back to 100 percent.

 

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.)

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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.

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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.

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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.”

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.