Freak

After going to high school during the “alternative” craze of the ’90s, I was goth during my late teens and early 20s. I wanted to be a freak. Ministry’s “Every Day Is Halloween” was my anthem. I wore all black. I had vinyl pants. But I never was one of those people who would dress head-to-toe goth all the time, because I’m lazy when it comes to fashion. (Hence the goth thing—all black—versus a counterculture that would require more color coordination.)

My rebellion was only part-time. But I reveled in throwing my differences in the face of the world, even as I copied the looks of others. I started dressing weird in high school to scare people away so they wouldn’t bother me. It worked, for the most part.

I’ve always wanted to stand out and blend in at the same time.

I’m still not quite sure what I was rebelling against. Other people? I still wear a lot of black. Everyone in New York City does, so I feel as if I’ve really arrived home.

But I think my freak past is why losing my hair and looking kind of weird hasn’t bothered me as much as it does some cancer patients. I’ve gotten double-takes on the streets before. I’ve stood out in a crowd. (Unless it was a crowd of other goth people, and then I just blended in to the sea of black, achieving my delicate balance of standing out among the masses and blending in with my counterculture brethren.) Even after I stopped wearing so much black, I’d still wear some crazy outfits.

Now I look like a freak again. I’d forgotten what it was like. In New York, it’s pretty hard to get people to do double-takes. People are pretty conditioned not to look at you too hard unless you’re really going out of your way for attention. It’s not a bad place to look a little different. But I do notice people looking at me and then looking away, not wanting to stare at my bald head or my lack of eyebrows and eyelashes. I should make more of an effort with a wig, but eh. And I’m not going to draw on my eyebrows unless I really want to look like a freak.

Every now and then, I get the “Oops, I shouldn’t stare” look.

Sometimes, when I’m feeling nasty and I’m full of self-pity, I have that old feeling of rebellion, and I want people to stare. I want to remind people that, out of nowhere, something crappy can happen and turn your world upside down. It’s such a mean thought, and it’s erroneous to think that everyone walking around with hair has a charmed life. As I noted, I’ve been trying, at least, to remember that Ian MacLaren quote: “Be kind, for everyone you meet is fighting a hard battle.” That person who looks physically fine (who I might be unfairly resenting) might feel worse than I do or might feel terrible inside and I’d have no way of knowing. People who look well aren’t my enemy; my toxic thoughts are the problem.

Before I had cancer, I would sometimes sense—maybe wrongly—resentment every now and then from people who thought I had a charmed life. Not often, but every now and then, I’d get a whiff of resentment—a snarky comment, an undertone of bitterness. I wouldn’t even blame them—I often wondered if I had it too easy, or if I needed to be tested by something. I know now that I didn’t. I’ve had my internal battles.

Irrationally, sometimes I hope that I paid for good things to happen with this past year and that I can resume a life where things seem to fall into place for me.

Because things sometimes do seem to fall into place for me. I’d consider myself lucky, but I wouldn’t leave everything to fate. I’ve worked hard. It’s not like I’m undeserving of happiness.

I do have a gift, though—or gifts, I should say. Sometimes I wish for something and I magically get it. It’s always something random and very specific. For instance, I soaked my Converse once at SXSW and really had no shoes to wear, and at the next event I attended, they were giving out free tennis shoes. One morning, I wished for a hair blow dryer, and that night I got invited to an event where they gave out gift bags with free hair dryers. I’ve sat at my desk and wished for ice cream and had a co-worker pop her head into my cubicle, offering me a sundae she bought and didn’t want. I forgot deodorant on a trip back to Ohio, and before I could buy some on my way back from yoga class, I discovered a basket of free deodorants right by the door of the yoga studio. I have a lot of stories like these. It’s like, every now and then, life gives me a free gift.

I can’t wish for a million dollars. It has to be something small in order for my wish to be granted, and I can’t summon it to happen. I have to be not expecting to magically get what I want.

I already know I can’t wish the cancer away. I just have to hope—like everybody else—that this last treatment was successful.

I also know that I really don’t want to be some sort of sad reminder of mortality to people who see me in all my bald glory. (And I know I’m too lazy to always wear a wig.) I hope people just see me as a fellow person fighting a great battle along with everyone else. I’m finally standing out, like I always wanted, but I’ll be happy to blend in again.

Photo note: This photo is from my goth days. In the full photo, I’m looking up and smiling at a friend who has spiked his hair completely up before a Bauhaus show in Chicago.

What I’ve Lost…and Gained

After months of illness, it’s hard not to sometimes bitterly take stock on what you’ve missed out on. Today, I heard about something else I can’t attend while I have the immune system of an infant, but I’m OK with it. Other opportunities will arise.

There are some days when I’m not OK. I’m tired of being poked and prodded and not getting on with my life. The most frightening thing to me is the thought that this stem cell transplant and radiation didn’t eradicate the cancer and there will be no getting back to “normal.”

I don’t want cancer to become my life. But for some who have stubborn cancers, it can end up being something you live with for a while versus something you get over. I’m not sure if I’m strong enough to do the former, but there’s a small chance I might.

What I’ve lost, I can get back—for the most part. I’ve been robbed of some time. But when I look back at what I’ve lost, I can’t help but see what I’ve also gained. Not that I’m one of those everything-happens-for-a-reason people. I honestly don’t think that everything happens for a reason. If anything, I’ve always personally been more of an existentialist.

I’ve said this before, but I don’t think I needed to get cancer to give me any fresh perspectives on life. I was doing just fine. Dealing with this has changed me a little bit, but I still don’t think it had a profound impact, not one that I can tell. I already appreciated life and what I had. I didn’t need to slow down. I didn’t need this.

That’s not to say I didn’t learn anything, though. It doesn’t mean I can’t see some silver linings to my clouds. What have I gained? Most importantly, I hope it’s a cancer-free prognosis. I’ll find out in August if that’s the case. After more than a year I’ve treatment, I’m beyond over Hodgkin’s lymphoma. I just hope it’s over me.

What I’ve gained:

Mental strength. I’ve lost weight, and most of it is muscle. When I look at my wasted body, I try not to mentally calculate the hours in plank or in utkatasana it’s going to take to get me back to form. Right now, I’m walking to keep my energy up, and I’m probably going to start to do walking DVDs and extremely gentle yoga.

What I’ve lost temporarily in physical strength, I’ve gained in mental strength from enduring the treatments. As I mentioned before, I was perfectly happy suspecting I might be weak if it meant I could go untested. It turns out I have a little bit more fortitude than I thought.

I’m extremely squeamish. I don’t faint at the sight of blood or anything, but I generally don’t like to think about bodily functions or fluids or anything to do with the inside. But I’ve endured things like tubes in my chest and IVs in my arms. I’ve given myself injections. I can do some of this squeamish business; I still would prefer not to.

A sense of hair adventure. As I mentioned, I feel smug and superior when I see women’s beauty advice pop up in my Facebook feed, since it no longer applies to me. I don’t need to know how to have glossy, voluminous hair or know how to get curly, long lashes, since I have no hair or lashes.

Of course, I never worried about it much before, either, so my hair loss really hasn’t bothered me much. I would wash my hair and occasionally brush it, but I would never blow-dry or put any products in it. Sometimes I’d get a dreadlock and cut it out. I feel like there was some sort of session about being a woman and caring about beauty concerns that I missed as an adolescent.

I didn’t wear makeup until I was 25, at the urging of a friend who told me it was good for job interviews and looking professional. She took me to a few beauty counters, where I discovered they make you up for free (!) in hopes that you buy their products. I feel obligated to buy everything from people who work on commission, so I never take advantage of this. Anyway, that’s how I’ve applied makeup since—just simple eyeliner, shadow, lip gloss and blush. I draw the line at concealer because I don’t see the point of putting something that looks just like my skin over my existing skin. If I’m going that far, why don’t I just wear a mask and call it a day?

I stopped wearing makeup at 13, because I hadn’t known how to apply it. I’d put eyeshadow on my eyes and then, inexplicably, I’d put a swath under my eyes. No one told me I was doing something wrong until a fateful day in the lunchroom freshman year of high school, when a well-meaning friend asked me what was wrong with my eyes. I’d put pink eyeshadow above and below my eyes, creating bright pink rings. For some reason, I thought this made me look better.

“Nothing,” I said.

“But your eyes are all red,” she insisted.

“That’s my makeup,” I replied. It then dawned on me that I really must look like something was wrong with my eyes, because she seemed genuinely concerned.

“Oh,” she stammered. I must have looked hurt, and I think my other friend must have looked defensive on my behalf. “I just thought… It looks… I didn’t mean…” I will take the apologetic look on her face with me to the grave. Now she thought that I thought she’d insulted me on purpose. It was that point where someone has accidentally insulted you and that person visibly feels so bad that you feel worse for the person than yourself.

What she did, however, was helpfully shape my life for the next dozen years. I went to the bathroom, looked at myself in the mirror and washed off my makeup and didn’t put any on again for more than a decade. I didn’t know how to wear makeup, so I just mercifully stopped. Sometimes I’d dabble, but I had no interest in really learning, until my friend took me into the mall to finally help me learn how to apply makeup.

So my beauty routine falling by the wayside is a bit of a relief. I’m not big on wearing my wig. All my little cancer hats are in the wash, so I’m wearing a do-rag like Bodie Broadus from The Wire, and I’m totally fine with it. I’ve been tying my do-rag with a bow in the back, and I’m kind of hoping it catches on in the street. I’m going to sit out on my stoop more so the guys from the neighborhood can see and emulate.

I wish I could say that my aversion to makeup is some sort of feminist statement, but I’m just lazy. Also, I believe in setting expectations low. When I do wear makeup, people compliment me on how great I look. (Almost to the point where I wonder how hideous I may usually look, but just shy of that point.) My attitude is: This is what I really look like. Deal with it. If you’re special, one day I’ll make myself up nice for you.

This is what I look like now, and I'm OK with it.

This is what I look like now, and I’m OK with it.

I think I look OK. I’ve looked better, for sure. But I probably looked worse when I put eyeshadow under my eyes. That may have been my low point.

As someone who has had the same hair style forever, this has made me more adventurous in that department. I’m looking forward to trying short hairstyles, like that girl from the Halt and Catch Fire previews (but brunette) or maybe the Claire Underwood (but only if it makes me ruthless).

A sense of mortality and health. This one’s tough. When I was getting the radiation explained to me months ago, I almost cried when the nurse told me that I’d have to eat heart-healthy and exercise for the rest of my life.

It wasn’t the eating plan and workouts that made me sad. I eat generally healthy anyway, though I eat more candy than I should. (If I could sustain myself on sugar, I would.) And I enjoy working out. It was the permanence. For the rest of your life. The radiation doesn’t come without consequences—and they’re lifelong. My heart and lungs are a little weakened from being zapped. I’m at higher risk for some cancers later on.

I’m losing things that won’t come back. I might go through menopause very soon. I have to take extra efforts to be healthy because of what my body’s gone through. Things got real right then.

Even more perspective on how great my friends are. I’ll lose some gardening time this summer. As it turns out, everything I love—cats, gardening—can give me toxoplasmosis. I’ve gained some garden helpers who I can supervise over my garden plot this year.

In fact, I’ve gained a lot of help and support—more than I ever expected. The outpouring of kind words has been humbling. I don’t know what I did to deserve such a great group of friends, but I’m going to try to keep doing it. I’ve been inundated with cards, thoughtful little gifts and well-wishes. And, in many cases, it’s been from people I’m not always in touch with, so it’s been nice to reconnect with people. Even though the Internet is junky and boring these days, I’m grateful that social media lets me be in touch with so many people. Being sick is no fun, but it’s really shown me what a great network of support I have around the world!

On Blogging

My invitation from The Big C and Me to join the World Blogging Tour last week got me thinking about why I write these blogs. At first, it was a way to process what was happening with my Hodgkin’s lymphoma, and later, once I decided to share that I had cancer in September 2013, it was a way to keep people posted on what was going on. But I’ve also wanted it to be a place where those going through ABVD chemotherapy or a stem cell transplant could read about my experience so they had an idea of what to expect.

I found a few blogs about Hodgkin’s lymphoma and refractory Hodgkin’s lymphoma to be helpful, so I wanted to put my own info out there, although each patient has his or her own experience. Some people can eat all the way through the transplant, some have throat pain (like me), and others have nausea. Some people experience very few side effects, while other people have many. Many people go into remission after ABVD, while some refractory or relapsed cases need additional trials, chemo and radiation.

I never wanted to become a cancer blogger, because I never wanted cancer. Once I started writing, though, it became extremely therapeutic. When I talk about pain or side effects, I hope it doesn’t come across as self-indulgent or woe-is-me. It’s just to let people know what happened and what they might expect. I’m not one to pore over every blog out there either, because at some point, I’d freak myself out.

I suppose my message is: If I can to this, so can you. I have a low tolerance for pain. I’m squeamish. I don’t like doing things I don’t want to do.

My experience, overall, has been a good one, despite the disappointments of having refractory Hodgkin’s lymphoma and the year-plus of treatments.

Here’s a little update on what’s going on with me, more than a week after my transplant.

My eyelashes are gone. They just disappeared one day. In high school, this guy I knew plucked out all his eyelashes one day because he was bored, he told me, as we stood in line for gym attendance. His eventually grew back. I have a few left, and they keep depositing themselves into my eyes.

My eyebrows also are mostly gone. I feel as if I spend more time, money and thought grooming my brows than my hair (back when I had hair). It’s almost a relief. Fine, take a break, brows. You’ve earned it. Come back when you’re rested, and we will resume our struggle with how much real estate on my face you’re allowed. Spoiler alert: Not as much as you seem to think. (I still have a few mustache hairs in place, though. Those can go away forever if they’d like.)

I am nearly sipping. I took about seven sips of tea last night, and it felt momentous until I looked at my nearly full cup. Oh, well. Small steps. The doctors seemed impressed after looking into my mouth, which has been healing, but they also don’t want me to force myself to eat or drink. Taking a few tiny pills today really hurt. Today, more tea; tomorrow, broth.

My throat's enemy: The tiny pill.

My throat’s enemy: The tiny pill.

I had a bit more tea today, but I forgot that I need to focus all my attention on swallowing liquids while my esophagus heals. Otherwise, disaster ensues. Luckily, I didn’t choke too much on my tea.

I’m starting to get hungry again. They really go all out here to try to tempt you to eat, so it’s no fault of the menu. I have in my possession the regular menu, the weekly specials, the children’s menu (with a Thanksgiving Day sandwich) and a purée menu (where everything is puréed, even the lasagna that I plan on ordering when I am well enough). I just need to get rid of this pain.

I am awake for hours at a time. I still nod off a lot—while I’m typing an email or getting my vitals taken. But I can stay awake for awhile without napping again. But on that note … I can tell I’m falling asleep now if I close my eyes for more than a second or two.

A Year After My Hodgkin’s Lymphoma Diagnosis

A year ago yesterday, I found out I had Hodgkin’s lymphoma. That day, if you would have told me I’d be putting duct tape all over my head a year later, I may not have believed you.

This past year has seen me do a lot of things I didn’t think I would or could do. I’ve been through six months of chemo. I’ve given myself blood thinner injections. Until this past month, I’d never been in the hospital overnight. I have nine radiation tattoos. I’ve shaved my head three times.

That last part brings me to the duct tape. On Saturday and Sunday, I noticed all my hair was falling out at once. I could just reach up and give it a slight pull, and it would easily come out.

I was thinking of just pulling it all out, and I started to do so Sunday morning, but got bored, so we decided to shave the rest off. I’m not sure who reads this, but if all your hair starts falling out after augmented ICE, just pull it out, no matter how long it takes. When I shaved it, I had stubble left. But it hurt. When I put my head on a pillow or touched my head, it felt like tiny needles in my scalp. The places where I’d pulled it out felt nice and smooth.

On Monday, I was desperate. I asked my boyfriend if we had duct tape. At first, he said we didn’t and he added that he thought pulling out my remaining hair with duct tape was a bad idea. He argued that you didn’t know what was on the sticky part of the tape. But since I’m regularly being injected with chemicals that kill all my rapidly-growing cells (including my hair and those is my stomach lining—and hopefully the cancer), the toxicity of duct tape is the least of my worries.

“We do have duct tape, but you’re not using it on your head,” he finally admitted. Killjoy.

I spent lots of time putting masking tape on my head.

I spent lots of time putting masking tape on my head.

I tried packing tape, but that pulled out only part of my hair. And then masking tape, which worked a little better. If you’ve ever wondered what it’s like to apply masking tape to your whole head and pull it off, it’s as tedious as it sounds. I would never try it, obviously, when your hair wants to be attached to your head. But I just needed to get these remaining hairs. I was obsessed.

After another night of prickly sleep, I begged my boyfriend to look for the duct tape. He really couldn’t find it this time. (Or so he claims.) And then he “forgot” to pick up some at the store. I applied more masking tape to my scalp.

Then, yesterday, I noticed a painful bump on my arm, near where one of the chemo IVs had been. I recognized this as signs of a superficial blood clot, which I’d had on my other arm during the ABVD chemo. I called the doctor and had to go in for an ultrasound and rescheduled a work conference call.

The results were two superficial clots — not serious (but painful) clots in my right arm. Since I am having a leukapheresis catheter put in on Friday, I can’t take blood thinners. (On a good note, this stays in for the remainder of treatment and my arm veins get a nice break. Overall, though, I’m really grossed out by having tubes sticking out of my chest for a few months.)

The doctors told me to apply warm compresses to my arms. I forgot to pick some up, so I’ve been thinking about applying the cats after they’re done sunning themselves or after the big white cat is done absorbing the heat from the space heater.

What I did pick up on my way to the ultrasound, however, was duct tape. (And a Snickers egg. Snickers are my favorite candy bar, but they lose something in egg form. I think the carmel, nougat, nut and chocolate ratio is compromised.)

Free at last!

Free at last!

Upon returning home, I triumphantly applied duct tape to my head (and ate half of my Snickers egg). And — just as I thought — it removed my hair. I am free of stubble and smooth-domed. I’m pretty sure my hair won’t grow back until May or June, so this will be my look for awhile. And, unlike last time, nothing is left of my hair.

During this time of baldness, I’m always kind of at a loss of what to do in the shower. The majority of the time is spent washing my hair and shaving. I could take up singing my bald theme song, but I don’t have a very good voice. I’ll probably just exfoliate.

Despite his reluctance to assist me in applying duct tape to my head, my boyfriend assures me that I’m not funny looking. But I had been reluctant to wear one of my usual sleep T-shirts, and I couldn’t pinpoint why. It has the logo of Cleveland goth band Lestat, with a depiction of Nosferatu. I inherited this T-shirt in high school from a friend’s older sister. Today, when I looked in the mirror while brushing my teeth, I realized that there were two bald people with prominent ears displayed in the reflection. After I emerged from the bathroom, my boyfriend looked at my shirt and then at me and said, “Hey, you kind of look like…”

That guy on my T-shirt looks familiar...

That guy on my T-shirt looks familiar…

“I know,” I said. I’d hoped if I ever looked like a vampire, it would be one of those sexy, preternaturally good-looking Anne Rice characters. I suppose this is what I get for those years of being goth, emulating that vampire look: Nosferatu. Be careful — or very specific — about what you wish for.

Speaking of vampires and blood, my blood pressure’s been very low. I’m not sure why. If I had to venture a non-medical guess, I’d say it’s because I’ve been pretty calm and haven’t been in public much. My blood pressure’s usually a little on the low side, but I wonder if my Frank Costanza-like short fuse raises my blood pressure and keeps it normal. (Serenity now!) I’m not sure what I should to do raise it, other than stew about topics that upset me, like flip flops on the train, Doritos Tacos Locos or that new Kevin Costner movie that looks so bad it makes me angry that Hollywood continually expects us to watch some of the terrible films they keep making.

Aww...

Aww…

In the meantime, I haven’t gotten around to applying a cat to my arm. But this evening, my arm clots really hurt. As I whimpered and cried as I tried to extend my arm, one of the cats came over and put her paw over my hand and licked my knuckles. (Aw.)

To his credit, the other cat is not without his own sweet gestures. A few weeks ago, I felt a little overwhelmed by everything and just put my head down, face-first on the bed. I was about to cry when I felt a sandpaper tongue on my head and a paw patting my head. I suppose it’s possible I had crumbs in my then-short hair, but I’d like to think he was comforting me. He may never understand how to get treats out of his toys and he may lack feline grace and fall off the couch a lot, but he’s a sweet cat.

Obviously, this is not where I’d like to be a year from my initial diagnosis. I wish the six months of ABVD had cleared up the cancer. I’d rather not have refractory Hodgkin’s lymphoma, The hardest part of treatment still lies ahead, in these coming months. Yet absolute ridiculousness of covering my head with duct tape and looking like Nosferatu is at least keeping me from taking myself too seriously on what could have been a very sad anniversary.

All My Hair Is Falling Out at Once

After finishing up with chemo in late September, I shaved my head once more to be Walter White for Halloween, and my hair has grown in once more, thick and lustrous. It’s finally to a point where it looks like a haircut on purpose, like a cute pixie cut.

And now it’s time for it to fall out again. I was told I would lose my hair about two weeks after the augmented ICE chemotherapy, and sure enough, it’s time. I just realized I won’t have to pack shampoo for my next hospital stay.

My scalp aches. It’s as if I can feel each follicle letting go of its hair. This happened with the ABVD chemo as well. Although with the lower dose chemo, the hair loss was gradual—until one day I noticed my hair was too thin to keep.

I had wondered if my hair loss would happen all at once with the high-dose chemo, and it pretty much is. If I reach up and tug at the back of my scalp, I can pull out a handful of hair. It’s been perversely tempting to do so, but I don’t need to develop any more nervous habits. (Or maybe I do need a new one to break me of biting my nails.) I’m pretty sure I could just wash my hair away in a few days. But I’m worried I’ll end up looking like Smigel.

So I’ll probably have to shave my head for the third time tomorrow or Monday.

What makes me a little nervous is that when it does come back, some time in April or May, it’s probably going to be a different color or texture. I hope it doesn’t turn white, like Moses after talking to the burning bush. (Actually, I just looked that up and it’s not a Bible fact, but I saw that Charlton Heston movie a lot as a kid.) I guess I’ll just have to wait and see what happens.

I do know I’m going to keep it short once it comes back in. I don’t even have any interest in wearing my long wig. All these years I’ve based my hairstyle on what I thought would look best and be easiest to take care of, and i thought that was long and straight. Now that I’ve found a hairstyle with even less maintenance is available to me, I can’t go back to anything else.

So long, hair, it’s been fun. See you again in the spring!

My Hair Isn’t Really Growing Back Yet

The other night, I dreamed I had male-pattern baldness. Instead of my usual fuzz that makes my head resemble that of a baby penguin, I had a big bald patch at the crown of my head, like a monk, as well as a receding hairline. I was kind of upset about this development in my dream.

When people have seen me recently, they mistakenly think my hair is growing back. But it’s really the hair that I have left growing in, because the chemo didn’t make all my hair fall out. It just thinned my hair until it looked so weird, I decided to shave it off.

So I’ve been launching into an explanation that ends with: “I’m shaving all my hair off for Halloween and starting fresh.”

I’m going to be Heisenberg, and by November, my hair should finally start growing back. (Provided I don’t need more chemo.) Then I can just start with a clean slate. Or, in my case, a clean, bald head.

Honestly, I will know my hair is growing back when my facial hair returns. When my mustache is once again thick and luxuriant and when my eyebrows require threading every two and a half weeks, it is then that I will know I’m truly on the road to recovery.

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.

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.

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.