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

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.

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!

Stem Cell Transplant Soundtrack

Now that I’m home, I can work on important things like my Stem Cell Transplant Soundtrack. I’ve been thinking of songs through this whole process, from radiation through chemo and recovery to homecoming. Below is my list.

“Radiation Vibe” Fountains of Wayne

“Radioactive” the Firm

“Fade Away and Radiate” Blondie. This was the only radiation song I could think of initially. Imagine Dragons isn’t on here because that song is terrible.

“Poison” Alice Cooper. You’ll notice a lot of hair metal in this list. Why? Because hair metal is awesome. If Nirvana hadn’t happened, I would have happily spent my high school years as a metal girl. But grunge hit, and I couldn’t find my pointy metal boots at the mall anymore, so I had to buy combat boots and become goth. Actually, in latter high school, I was mostly goth, but since it was the ’90s, there was a lot of general alternative going on—think Angela Chase’s confused wardrobe in My So-Called Life. I’d wear flannels on top of my mostly goth outfit. Anyway, my point is, I would have stayed metal if I could have.

“Shot of Poison” Lita Ford. I love Joan Jett, but I think Lita Ford doesn’t get enough credit for being in the Runaways and just generally being a pioneering female guitarist. I’ve always been a little bit Team Lita. I think that because she dressed a little provocatively, she wasn’t taken seriously. (This video is an example.) I like that she Saran Wrapped her man in this video to keep him fresh. This video also made me remember that when I was a metal girl, I wore giant crosses, like Lita here, but much more clothing.

“Don’t Drink Poison” Le Tigre. This song by feminist trio Le Tigre is to make up for the writhing of Lita Ford.

“Church of the Poison Mind” Culture Club. I’ll never forget the first time I saw Boy George. It was the early ’80s, on a morning talk show, like Good Morning America, which my grandpa was watching while my mom and grandma got ready for church. I was probably about four or five. When Boy George’s image appeared with his name, I short-circuited. I couldn’t reconcile his long hair and makeup with his name. I stood there, transfixed in front of the TV, watching the pretty man. That I spent so much time later listening to androgynous musicians and men in makeup isn’t lost on me.

“Bad Blood” Ministry

“Love Like Blood” Killing Joke

“Bloodletting” Concrete Blonde. These last two songs are nods to feeling (and looking) like a baby Nosferatu while my mouth healed.

“Fever” Madonna

“Taste the Pain” Red Hot Chili Peppers

“Cure For Pain” Morphine. Morphine was a great band, and this song is very appropriate for the week I spent in a haze.

“Sister Morphine” the Rolling Stones

“I Want a New Drug” Huey Lewis & the News

“I Wanna Be Sedated” the Ramones. I am so glad I didn’t go to senior prom and saw the Ramones instead. I pretty much was bored at every single high school dance I ever attended, but I always ended up getting roped into going. At the time, I was still plagued by the thought I “should” go to my last prom, but I didn’t have anyone to go with, whereas I had three people to see the Ramones with me. If I would have gone to prom instead of the show, I would have regretted it.

“Comfortably Numb” Pink Floyd. I’m not big on Pink Floyd, but this is what morphine is like.

“Painkiller” Judas Priest

“Movin’ On Up” Primal Scream. Once I started feeling better, this is the song that immediately came to mind. Bobby Gillespie’s shiny shirt and the chorus’ bangs are very ’90s.

“Sea Sick” Love Is All. This is for when I hit my wall of not being able to be in the hospital.

“Things Can Only Get Better” Howard Jones

“Home” Iggy Pop

“Josie” Steely Dan. I nearly forgot this extremely appropriate one, but a friend posted it to my Facebook wall. I collect songs about my name, so it’s the reason I have a Steely Dan album and a Blink 182 album.

“Coming Home” Cinderella

“Home Sweet Home” Mötley Crüe

Hospital Life

Months ago, I told myself I would post every day while I was in the hospital, but I quickly realized that wouldn’t happen. I’ve been busy getting radiation, starting chemo and trying to wrap up some work items. At least this first week in the hospital has gone by quickly. As I mentioned, it’s strange to have a cut-off date when you know you’ll start to feel side effects, so I feel as if the window is closing to update the blog, have visitors and get other things done. My deadline approaches, so here’s a post on my hospital life this past week.

Radiation. On Friday, I wrapped up my week of TLI (total lymphoid irradiation), completing 20 total sessions of radiation. Last week, the lymph nodes in my neck were swollen and sore, but that’s expected. I’m told the glands don’t like the radiation. Later on, I will probably experience a sunburn type of skin reaction, as well as mouth sores and a sore throat that makes it difficult to swallow.

The worst part of the radiation, for me, were the measurements they took the Fridays before they started the radiation. It required staying still, in the body cast they’d created for you, for a long time. In both cases the time ran over the usual 45 minutes to about an hour the first time and an hour and 15 minutes the second time. I’m pretty good at being still for long periods of time, but I had to not move for about 15 minutes to half an hour longer than my comfort zone. And once you’re past minute one of that zone and have the fidgets, it seems like an eternity. Still, it wasn’t too bad. (And when they’re radiating your insides, I understand their need for precision.)

During outpatient radiation, I would trade my shirt for a gown, then lay down in my mold, while they adjusted my position on the table, darken my tattoos with a marker and make some additional marks. Then they would radiate the two portions where there had been residual cancer in my chest and belly. The machine would flip around and radiate the front, then the back. (It reminded me of the scene in Logan’s Run, where Farrah Fawcett is offering to give Michael York a facelift but someone messes with the lasers. As I’ve noted before, this film that I saw multiple times during my childhood really influenced my ideas of the future.)

My outpatient treatments were six hours apart, so I was never sure if I should go back home to Brooklyn or wander around looking for WiFi with my elderly (in tech years) computer that needs to be plugged in to get much a charge these days. I also ended up being on the train during rush hour. Usually, this wouldn’t be a problem for me, but I’ve been a hermit for a few months. And in stark contrast of how unfailingly nice everyone is at the hospital, I was ill-prepared for the cruelties of New York City at rush hour. I expect I’ll have to re-enter society slowly once I’m recovering from my stem cell transplant.

Inpatient radiation was much the same, though the set up for the TLI would take a bit longer, and I was wheeled down from my hospital room. I also sometimes had student trainees the last few days of treatment, not that this added much to the time. I was told they don’t get to see many TLI treatments so I’m glad my radiation was a treat for somebody.

On the first day, I was told I could pick a music preference or channel, but I blanked. I couldn’t think of anything appropriate, so I didn’t give them any suggestions and spent some time listening to classic rock, the Billy Joel channel and adult contemporary pop music, but it provided food for thought as I was radiated.

I gained a new appreciation for Adele. “We Didn’t Start the Fire” really doesn’t stand up to the test of time. Coldplay is still boring. I also heard a lot of John Mayer songs, and I don’t get why people like his music. I tried to spend one session trying to name all the starlets he’s dated, but the radiation treatments don’t last that long. I also tried to think of radiation songs, but I could think only of Blondie’s “Fade Away and Radiate.”

Food. My throat hasn’t started to hurt yet, I’m still free of mouth sores and my appetite is still OK. I’m on a Zofran drip, though I can tell there’s a slight rebellion going on in my digestive tract. As I’ve noted before, it’s a strange feeling of knowing the mechanics are a little off but not being able to feel the effects. It’s like seeing your tire blow out and feeling only a slight wobble but still being able to continue driving your car with no problems.

I’ve been trying to enjoy chewing at eating as long as possible, before I can’t eat. I managed to eat all my desired specials this week: Nutella crepes, Mexican bean soup, a Sloppy Joe, Asian vegetable soup, shrimp in garlic sauce and breakfast pizza. I also look forward to the afternoon tea service more than I should, because the tea arrives with a little pastry—a walnut muffin, a mini red velvet cookie with white chocolate chips, some of the best scones I’ve had in awhile.

The indigestion from the radiation and chemo has thankfully been my worst side effect so far, and I’ve been getting extra medication for that. I had the hiccups in the middle of the night, but they didn’t last long. I’ve been trying to stick to a soft diet of soups and cereals, but have been waylaid my some of the daily specials. Today I had a hot dog, but I have a plan of eating small breakfasts and dinners and a substantial lunch so I can digest during the day.

I hate seeing food go to waste to the point where I’m weird about it. With so many of the trays arriving with condiment packets—salt, pepper, sugar, honey—it was only natural that I would start condiment hoarding, in case I needed to dip into my stores at a later date. I had them visible on a shelf, but I realized my boyfriend would frown at them and throw them away while I am plugged into the wall and unable to stop him. I’m considering putting them in my room safe.

Oh, I’ve also been eating candy, though that’s probably going to come to an end soon. I am now in possession of two Easter basket of goodies, and another friend brought me a giant Reese’s egg. And someone else thought to combine the cat theme and the candy theme with Katzenzungen, German chocolates with pictures of cats on the box.

I also got a picnic-type basket filled with packaged cookies and cakes. There was a tense moment when the nurse wasn’t sure if the desserts were approved for me to eat or not, so I briefly considered eating as many as I could while she was gone checking. But they were not confiscated.

Exercise. If there’s one thing that’s been drilled into my head over and over again during my preparation for this stem cell transplant, it’s the importance of staying active. Or, at the very least, not staying completely prone in bed.

My doctor and nurses told me that when I’m not sleeping, I should sit it in a chair. Being flat for too long increases your chance for contracting pneumonia, so they want you elevated.

The doctor told me that I should also always sleep at a 30-degree angle, at least. With the adjustable bed, this is possible to measure, but my attempts have been only partially successful. If I sleep on my side and wedge myself in with pillows, I can maintain this angle, but I’ve woken up a few times flat and scrunched up at the bottom of the bed.

Right now, it’s the easy part. It’s going to be after the transplant when it’s going to be hard to get moving and find motivation to sit in a chair.

Though I’ve said this before, I’m naturally a sedentary person and, as much as I love working out, it really takes me a lot of motivation to do so. Once I stop moving for a period of time, it’s extremely easy for me to slip back into my natural sloth-like state.

Since I’ve been here, my counts have been up and down, so I’ve been allowed to do laps in the hall for only three days since I’ve been here. I’ve heard 14 laps is a mile, so I’ve been trying to do that, but I lose count.

Yesterday on my walk, I found the designated room where visitors can eat. I peered through the window from the hall, and a man was about to take a pizza out of box. I thought it would be funny to stand at the window, with my gloved hands against the glass, wearing my medical mask, but it’s one of those things you only think about doing, because it would also be weird.

It’s not the pole filled with bags of chemo that makes it strange to walk in the hall. It’s the mask. No one can tell when you’re smiling.

I did have one session of hospital yoga, and it was nice to stretch and get moving. Obviously, we didn’t do anything to strenuous, but the instructor had me do some seated positions. For as long as I’m able, I’d like to continue with the bedside yoga program, as they call it.

Chemo. I started chemo on Saturday. I get a big bag of etoposide that the nurses change every 24 hours. It’s bubbly—I was calling it the “Champagne of chemo”—so it was causing air in the line and beeping pretty often. Every nurse has a trick to make it stop beeping, and the third nurse’s fix made it stop for good, so that’s good, considering I have another day and a half to go. Also, I found myself addressing my beeping pump and telling it to be quiet, so I named my pump Wilson after Tom Hanks’ volleyball companion in Castaway.

I’m also on cytoxan, which can damage your bladder if it sits around in there too long, so I’m on a lot of fluids as well. So far, they haven’t had to give me a diuretic and they keep saying, I’m “peeing like a champ.” It feels good to excel at something, even if it’s just because I’ve been drinking a lot of water.

So far, aside from my nagging indigestion, the chemo has been OK. The worst part is set for post-transplant, when all the side effects are supposed to hit me at once.

Chest catheter. It’s my last three weeks or so with my trusty chest catheter. It’s been so nice to give my poor, abused veins a rest.

I’ve been worried that my cats or a stranger would pull out my chest catheter somehow, but it turns out that I’m my own worst enemy. Now that I’m hooked up to my chemo, I’ve stepped on the lines a few times.

Also, though I love the convenience of electronics, the notion of charging them irrationally feels like a terrible inconvenience. And now that my computer needs to be plugged in almost all the time, it irks me. So you can imagine how I feel at having to essentially plug in myself—or at least this medication pump that I’m attached to. I’m getting used to it, but I long to be free.

Accommodations and décor. This is my first time on the bone marrow transplant floor. I have my own room, while I’m isolated from germs. There’s a chance I might get moved to another floor and a shared room when I’m starting to feel better.

My room is nice, with drawers for my stuff and a sleeper chair, in case my boyfriend wants to stay over. There’s a computer, a TV, a bed and a few chairs, as well as my own private bathroom. It’s not a bad place to call home for a month, considering the circumstances.

My view is of an adjacent wall. It’s the first thing I noticed when I walked in. It’s not as nice as my previous views of the Triborough Bridge, but I’m not sure if I want to put in for a room transfer just for the view on the other side of the building. I have a patch of sky, if I look up. I keep waffling back and forth, but I think I’m just going to stay put.

I arrived only with my clothes, computer and Kindle, as well as my cat blanket, a cat toiletry bag and a cat totem—all gifts. Since then, the cats have increased, and I now have a book of cat stickers, a drawing of one of my cats that someone sent and cat get-well and Easter cards.

Yesterday, my boyfriend brought me a digital picture frame loaded with photos. Sometimes, I can’t imagine a return to “normal” life, and sometimes I don’t dare, in case I’m disappointed. Yet looking at photos of family and friends and so many happy memories has been more therapeutic than I would have thought, and it reminds me of the good things to come.

Cats.

Even more cats!

More cats.

Candy.

Unofficial Visitors Policy

Some of you have asked about visiting, and as Greta Garbo was famously misquoted as saying, “I want to be alone.” I think.

That’s not to say I don’t want to communicate via Internet and phone. I had a few visitors during my most cognizant stay, when I felt the most well, and that was nice. But this isn’t going to be any fun. I wouldn’t be there if I didn’t have to.

The worst way to put this is that I’m going to get burned from the inside out the first five days, followed by seven days of being continuously poisoned intravenously. Then I’m going to be sick and sleeping — and, according to what I’ve heard, in a zombie-like state. Someone who’s been through a stem cell transplant said people came to see her, and she didn’t remember. The last week, I’ll be recovering, but I still expect to be in a haze.

I hate to be one of those people who inspires a Dear Abby letter. If you really want to come visit, you can. I think it’s nice that people want to, and I don’t want to hurt anyone’s feelings. But honestly, I’d rather see people when I don’t feel the worst I’ve ever felt. Everyone’s been so supportive and nice, so I do feel bad. But again, that same person who had been through this said that there came a point when she had to ask people to leave and she had to learn how not to feel bad about it.

If you happen to be around and want to drop by, that’s OK. But if you plan to come to New York specifically to see me in the hospital, please don’t. Unless you’ve always dreamed of coming to New York without the obligation of seeing me very much.

I just honestly believe I really won’t be up for visitors. Like I said, that could change. I won’t have a roommate this time, so I won’t feel pressured to win a popularity contest. (Because you know I’d feel a little rivalry.)

If you’re worried I’ll be bored, I don’t think I will be. I grew up as an only child on a cul-de-sac with no other kids. I’m used to entertaining myself. And I really do think I’ll be sleeping a lot, if augmented ICE was any indication of how I’ll feel.

It’s possible I might change my mind, at least for that chemo week, before I enter the zombie part or “hell week” as it’s sometimes called. (I’ve thrown up on most of the people I’ve gone to college with, so this might be your big chance to join that exclusive club.) You can check with my boyfriend for the latest!

Here are the rules for visitors.

Visitors have to have received flu shots for this season. My boyfriend is going to get his first flu shot ever. I can’t say anything to its efficacy. I’ve had flu shots and I’ve not had flu shots, and I’ve never gotten the flu. (Well, not ever. I had it once in second grade and I had the worst flu ever—nicknamed the Thanksgiving Disease by my group of friends who survived that terrible 1996 plague—in college.) That said, I’m really bummed that this whole procedure is going to obliterate my immune system. My old immune system was pretty great, and I rarely got sick. Except for the cancer. So I guess it’s back to square one.

Visitors must wear face masks, gloves and sometimes gowns. I hope most people wear formal gowns and tuxes when they come to see me anyway, but the hospital will provide gowns. (I don’t think they’re hospital gowns and I don’t think you have to get naked under them, but if you do, that’s your choice.) If you wear a face mask, I’d like you to pretend you’re in the band Clinic.

Visitors can’t have any germs. Well, they can’t be sick at least. No cooties!

No kids younger than 7. As much as I complain about missing my cats as a cat lady, this must be a very sad rule for parents of young children undergoing stem cell transplants.

No live animals or plants. The last time I was in the hospital, a bed bug-sniffing beagle came around as a precaution. I had a scheme to dress the cats as beagles, but I decided not to compromise their dignity by disguising them as dogs.

After the transplant, I want to see everyone, but that’s not going to happen right away, sadly. I’ll be back to square one with my immune system, so I have to stay away from crowded places for three months. I realize New York City is a pretty crowded place. But it’s advised to stay away from places like grocery stores at peak times, something I try to do anyway because I work at home and don’t need to rub elbows with the hoi-polloi. (I assume this also means the train, which is supposedly “filthy” and officially plagued by “schmutz.”) I have to avoid people with colds and viruses and such, especially for the first three months.

Post-transplant, I’ll also probably have trouble concentrating or remembering things. (I know some of your will say I had trouble with that before — insert comedy rimshot here.) It’s something referred to as “chemo brain,” a lingering mental fog.

So far, I’ve noticed this only a few times, after emerging from ICE. In one case, someone sent me an email about one thing and I kept responding to the subject we’d discussed in another email. It’s been hard concentrating during chemo, when the fatigue sets in, and afterwards, when I awake from my days of sleep. After that, it’s a bit like Lazarus rising from the dead or Sleeping Beauty awakening from her spell—or at least how I imagine it would be—it takes a little bit of time for me to remember everything that was going on before I went into chemo-induced hibernation. If I feel as if I’ve been asleep for a thousand years after a few days, I think a week or two will be harder to recover from.

In any case, please bear with my forgetfulness and general confusion—as you always have. I will remember an anecdote in detail from 1999, but I can’t remember my keys. And I get some very different things mixed up as it is. I sometimes get Gary Numan and Randy Newman mixed up. Oh, and Billy Bragg and Billy Squier. I also get Tinder and Grindr confused, so it’s a good thing I don’t online date. Mostly it is confusing to me. If you’ve talked about one of these subjects and I’ve looked puzzled, I’m just working this stuff out.

So in short, it sounds like, for at least three months, I’ll be easily tired and worn out, but I can slowly start to get back into the swing of things. And visit—or don’t. I’m just going to be exhausted, and I might smell like garlic.

Hopefully I’ll be almost back to my old self by my birthday in October!

Frivolous Chemo Concerns

Tomorrow, I have an online education session about my autologous stem cell transplant. I’ve been reading the giant preparation binder, but I haven’t thought of any questions. Considering that’s what I do for a living, I’m a little disappointed in myself, but I haven’t gotten through much of the material.

Part of me is honestly scared of what’s ahead. All I can think of are frivolous and fantastical concerns. For now, I will blame my procrastination on the plastic-loving cat, who runs her sandpaper tongue over the edges of the binder whenever I try to read. Here are a few of the concerns I won’t talk about tomorrow:

Do vampires roam the hospital floors? My most immediate cause for alarm yesterday was when I read that you smell like garlic for a few days after the transplant. With all this blood, are they keeping us from turning into vampires? Is a stem cell transplant really taking someone to the edge of vampirism, and then giving us stem cells to prevent the change? Is that why some patients in the hospital have “sitters” with them all night? It’s not to help guide them to the bathroom—it’s to prevent them from draining other patients while they sleep.

I’ve seen several Blade movies. Also, I was goth for awhile and have read all the Anne Rice vampire novels, so I can be considered somewhat of a vampire expert.

According to the binder, it’s a preservative that causes the garlic smell, not your body fighting off vampirism. I prefer to turn cutting-edge science into terms I can understand: medieval villager talk.

I also read that the nurses can give you lemons to alleviate the garlic smell. That sounds…sort of delicious, if paired with a delicate fish and a nice white wine. But if I see anyone with a chef’s hat lurking around those few days, I’m leaving that hospital. At least my garlic smell will keep away those on the verge of turning.

Whatever will I wear? After I Googled “stem cell transplant shirts” or “catheter shirts,” only a few results come up—including my own blog. Am I the only person with sartorial concerns during my stem cell transplant? I really don’t think I’ll care what I’ll look like—after all I’m supposed to feel horrible, and I’ve looked better.

But hospital gowns are drafty. After the leukapheresis catheter placement, I could wear my lounge pants, but I had to wear a gown on top to provide access to the catheter. I thought a lot about my gown when I was in the hospital after so recently seeing all the Oscar fashions. My gown could be said to have a plunging and an open back, worn off-the shoulder. Most gowns, though, whether they’re ball gowns or hospital gowns, aren’t that comfortable for long-term wear.

My booklet says that if you wear you own clothes to the hospital, to wear shirts that allow catheter access. So does that mean Henleys? Baseball jerseys? I have a few button-top tees and thermals. I’ve done some tentative internet searches and all I know is that L.L.Bean probably has whatever I need (or great Google analytics).

What do I do with my head? Right now, my head smells like a Strawberry Shortcake doll and her cat, Custard. If you were a little girl in the early ’80s, you know what I’m talking about. I should wear a big muffin hat to keep my head warm and get some striped stockings.

One of the best things about Strawberry Shortcake dolls was that they smelled like the desserts—the namesake character, Lemon Meringue, and her other friends. (Also, why do they keep updating dolls? This is not how they looked before. Strawberry Shortcake lives in a land of desserts; she doesn’t text and go shopping at the mall with her tween friends.)

In an effort to ease my scalp dryness since the hospital, I’ve taken to oiling my head with some of The Body Shop’s Beautifying Oils I got at a press event. I remember at the event, the PR person said you could put it your hair, so I did. This happened a lot at beauty events. I would put face cream on my face instead of on the back of my hand. PR people always seemed taken aback, so I kept doing it. I gave most of the oils away, but I can now choose between strawberry and Satsuma.

If I’m bald, then do I have dandruff? I’m still trying to figure out what I should use. I’m afraid to use moisturizer, although I guess I can opt for a natural brand.

So these are my concerns today. I’m sure I’ll have some legitimate ones tomorrow. Until then, I will think about how to ask delicately about vampires in the halls and hospital fashion.

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.

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.

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.

Blood and Wallet Thinners

I just called and left a long, rambling message for my oncologist’s office, saying that I think maybe I don’t need blood thinners after all. I had not been looking forward to a daily injection that I was told “might burn” if administered too fast. But I was prepared for that. And my squeamish boyfriend was going to heroically put his squeamishness aside to poke me in the abdomen with a needle for a few weeks.

But then there was the sticker shock of a $785 copay. Ouch. That hurt almost as much as the bump on my arm that mysteriously appeared last Tuesday.

I’ve mentioned before that since late July, my left arm has been hurting and pretty much just taking it easy while my right arm has been taking the brunt of the chemo. I even accused my left arm of faking it to get out of chemo.

But then the bump appeared, angry, red and burning. One night, I had a dream that I cut my arm and it hurt, and I woke up to my arm hurting for real. It would feel better in the morning, then it got progressively worse throughout the day.

On Friday, during my pre-chemo visit, I mentioned it to the doctor, who wanted to take an ultrasound for a better look at what was going on. The ultrasound technician looked at my shoulder and then worked her way down my arm. I could see the ultrasound, but it doesn’t look like anything to me. It’s just gray and black, like I’m dead inside. In fact, that would be my diagnosis to everybody if I gave ultrasounds: “Sorry, you’re probably dead inside, because it’s just gray and black with some white streaks of marbled fat or marshmallow swirl.”

The technician did find something in the screen, because then she called in the doctor and they agreed that my vein wasn’t compressing and told me that I had some superficial clots in the troublesome arm. (Just telling my boyfriend this part grossed him out, just to impart an idea of how squeamish his is and how brave he’s going to be to give me shots that I’m too squeamish to give myself.) The bump, apparently, was the biggest clot.

The good news is that these aren’t the kinds of clots that go to your lungs or brain—those are deep-vein clots, which often require six months of shots. These superficial clots can hopefully be taken care of in a few weeks. The doctors are puzzled that it’s happening now, especially in this arm that’s been taking it relatively easy.

After the ultrasound, I went back to the doctor, who prescribed Enoxaparin, while the nurse called around to check on the cheapest and best option. So while I would have a $40 copay, today I found out it’s $785 because of my new insurance deductable. My prescription deductible is $1,250, so it’s going to catch up with me at some point. I might as well get a big chunk of this inevitable cost out of the way quickly, like ripping off a Band-Aid. (Something, incidentally, they don’t do at the hospital.)

But, still in sticker shock, I found myself leaving a confused, halting message. Maybe I don’t need blood thinners? When the doctor had suggested my blood needed thinning, truthfully, I was hoping she would suggest a more organic method. Like cocktails. Would this troublesome vein be cleared up with, say, a week’s worth of happy hours? I didn’t ask though, especially since she’d so patiently entertained and answered my boyfriend’s query about administering IVs in places outside of the arm, like junkies in movies.

Before I go on the blood thinners, I have to take care of some orders of business. I’m going to re-shave my now-fuzzy head, because I don’t want to get my scalp nicked while I’m prone to bleeding. (Also, once my hair grows in a bit, it looks thin.) I also have an appointment with the dentist tomorrow so before the blood thinners turn a routine exam into a horror movie.

Incidentally, my left arm, ever the contrarian, has now stopped hurting.

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