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

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.

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 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!

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…

“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…

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!

Last Chemo! Why Am I Not Celebrating?

My last day of chemo, treatment 12 of 12, the last of the six cycles, was Friday. Why am I not setting off fireworks, organizing a parade and popping the champagne?

Well, even sparklers scare me, I don’t have time for a parade, and I can’t drink. It’s a bittersweet (and still slightly scary) time. My boyfriend says I always see the glass as half-empty. But I don’t think I’m being pessimistic. I’m being cautious. I don’t want to announce the end of chemo prematurely.

Because there’s a chance, even after these past six months of ABVD, that the cancer isn’t gone. I’m not saying that I know that for sure. I just know it’s a possibility, one that weighs heavily on my mind.

The last PET scan, after eight treatments, showed a reduction in the two remaining tumors, but they’re not gone. Ideally, the oncologists like to see the cancer gone at that point.

My new PET scan is slated for Oct. 10, and then I see the doctor about a week later. So I wait. I try not to think about the pains in my side and my chest. (Is it the tumors shrinking? Are they still there?)

I have plenty to busy myself with in the meantime. On Saturday, my community garden had a Bluegrass, Blues, Bake, Bulb Bonanza. (There’s still time to buy bulbs through Oct. 30 to support the garden!) And then I spent the evening making costumes for my cats for our Breaking Bad finale party. I have work, which I’m thankful for, though I’m still getting used to freelancing. It doesn’t feel real.

I also have something else to celebrate today—the last of the blood thinners! It wasn’t so bad, though the injections sting a bit, no matter how slowly you do them. It’s slightly less painful than listening to that LMFAO song about shots. What I noticed the most after the shots those first few days was that my butt felt funny. That’s right. My butt. It’s where I feel my squeamishness. It’s also the center of my fear. If I’m in a high place and have a fear of falling, or if something gives me the heebie-jeebies, the area around my tailbone feels funny.

After the first few days, the heebie-jeebies died down, but then I noticed the stinging. Also, making someone pinch her abdomen after she hasn’t been able to work out for months is a little cruel, but oh, well. I have more abdomen to poke.

The blood thinners appear to be clearing the clots, although my brave right arm, which bore the brunt of chemo since July, finally gave out on Friday. This time, I got an IV in the hand—but not the vein used last time, because it was a little achey. The IV was in fine, but for some reason, when any medications went in, I had an uncomfortable feeling in the middle of my arm. During the administering of the anti-nausea medication, raised red hives appeared on my arm, and it started to swell a bit.

The nurse put some cortisone on my arm, and she called in the doctor. They agreed it was an allergic reaction, though I’ve had that medication before. I think my right arm just had it with chemo. I feel as if they were protest hives.

The nurse administered the doxorubicin, bleomycin and vinblastine through that arm, but ouch! It wasn’t a searing pain, but a few times, I felt that feeling in your head when you have a lot of pain, like you might pass out. Maybe it was because my arm was irritated and swollen. I know I’ve been extremely lucky pain-wise until now, so I won’t complain. (Incidentally, I just recently found out that vinblastine is made from the Madagascar periwinkle. Who knew that such a pretty flower could be such a strong drug?)

When it came to the dacarbazine, the one that does kind of hurt, not to mention the most caustic of the medications, the nurse, the doctor and I all decided maybe we should try the left arm. The nurse found probably the last good vein in my left arm. I couldn’t even see it.

The next day, my hand was black and blue. The swelling went down after a day or two, though I still have some raised red marks. My entire right arm feels like it’s bruised. Sometimes it’s a shooting pain in my hand and arm, but more often, it’s a gnawing pain. I actually want to chew on my arm, like a wounded animal. It feels as if I could gnaw the pain out somehow. It’s really not so bad in the grand scheme of things.

This is temporary. Even the cancer, if it lingers, is temporary. At the very least, I get a break from chemo for a while. Once the scan results are back, the next steps are determined. I’m hoping that nothing is needed and I’m cancer-free forever. If it still looks as if there’s some left, there’s the watch-and-wait option, which I’m not a fan of. I want it gone! Or there’s the biopsy route.

I feel like I can’t start getting back to my “normal” life until I know what’s in store. I don’t want to make plans and then have them taken away.

Yet I also find this limbo, this uncertainty, comforting, because if it’s bad news, then I don’t know yet. So I wait and try to be cautiously optimistic.

Good News (Mostly)

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

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

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

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

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

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

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

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

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

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

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

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

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

Tired

I just took a nap for almost three hours. One minute, I was at the grocery store having a discussion about when mangoes are ripe and enthusiastically lobbying for the purchase of a baby watermelon, and the next minute, I was bone tired.

I knew this would happen sometimes. I napped yesterday as well. Chemo makes you tired. Mostly, I’m tired of having cancer.

I try to stay upbeat, but every now and then, I slip headlong into self-pity and a litany of complaints. I’m tired of looking for jobs. I’m tired of hustling for freelance work. My big toenails looks like this and feel like they’re about to fall off. Random stuff hurts. I can’t stay in the sun for very long before getting burnt, even with sunscreen. My fingers are numb.

I miss eating the random samples at the grocery store that everyone may or may not have sneezed upon. One of the worst parts about my compromised immune system is curbing my desire to eat food of questionable origins. And food that falls on the floor is no longer viable.

I used to invoke the five-second rule a lot. In fact, years ago, I found myself explaining the five-second rule to a member of the maintenance crew at the building where I used to work. He had witnessed me drop a French fry on the floor, then pick it up and put it in my mouth. As I rose from picking up my fallen fry, my eyes met the horrified gaze of the maintenance man. The fact that it was not even my fry, but that of an editor who I didn’t think would miss one, probably added to his confusion.

When I finished chewing (I have some manners), I explained, “Five-second rule.” I was met with a blank stare. He had never heard of it, so I had to explain how, if you eat something within five seconds of it falling on the floor, it doesn’t count. The flawed logic is that germs don’t have time to climb aboard whatever you’ve dropped. Mostly, however, the small time frame usually ensures that someone hasn’t seen you commit this questionable social behavior, so it’s like it never happened.

A few months later, when I found an article clipped from the newspaper about the 5-second rule atop my work inbox, I knew immediately who it was from and smiled. It stayed up on my cubicle bulletin board for a long time.

So you can imagine how it pains me to look at fallen comestibles, and have to throw them away.

The exception was last night, when I reached for my phone and heard something fall off my nightstand. I heard many tiny things rolling around. This was after yesterday’s nap, so I was a little groggy. I looked over the edge of the bed to see my Docusate “dolls” rolling around my (thankfully clean) bedroom floor.

The alarming part was that the cat was not only batting around the laxative/stool softeners, she was trying to eat them. And was soon joined by the other cat.

Docusate pills smell kind of like feet and fish. The cats pounced upon them like they were treats I’d neglected to share with them, impersonating Hungry Hungry Hippos.

Thankfully, the pills were too mobile and too big for the cats to easily eat, despite their best efforts. One cat just sat on them like he was going to hatch them later, hiding them under his ample belly.

I can laugh about this now, because no laxatives were ingested by the cats after all. So there it is. A bright side. There always is, even on bad days, when I am sleepily snatching laxatives from the maws of cats. Even when it’s not a full victory, and I wonder: Would I rather lose my nails than my hair?

So chemo wiped me out this weekend. I still managed to write and apply for some jobs. I had brunch with some friends today and saw some art before slipping into afternoon exhaustion. A friend unexpectedly came into town for a bit. My cats aren’t pooping uncontrollably. Things are still good, even when I’m too tired to see clearly.

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.