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?

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.

Halfway!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hair Today, Gone Tomorrow

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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