All or Nothing

I realized when the nurse practitioner told me I needed to do the ICE high-dose chemotherapy before moving on to the stem cell transplant that it was what I’d been expecting. My PET scan looked better, but it’s not 100 percent clear. The stubborn lymphoma spots in my chest and belly have decreased in size, and they don’t show up as brightly on the scan. So that’s good. But I still have to do the ICE. Close, but no cigar, Brentuximab.

Part of the reason that the doctors were doing this trial was to find a less toxic alternative to ICE. And ICE doesn’t sound pleasant. I allowed myself one blog read of someone who has gone through it, just to prepare myself without scaring myself.

On Monday, I pack up for three days and go to the hospital for round one of augmented ICE. Then I’m home for 21 days, while going in for blood tests and such, before going back for three more days of ICE. Then it’s on to the stem cell collection, then 10 days of radiation and the 21-day stay in the hospital for the transplant.

Everything’s going to change as of Monday, even if most of it is temporary. (After the stem cell transplant, I should be back to normal in about six months with a few long-term side effects.)

I feel as if I shouldn’t be writing this. Lately, no matter what I’m doing, I feel as if I should be doing something else. I have a limited time to do everything, a looming deadline that I can’t push back. I have work I need to finish, so I feel as if I need to get as much done as possible before I go into the hospital.

I won’t be able to work out for months. I’ve finally started doing yoga at home and a 20-minute Jillian Michaels workout. (I’m up to level two on the 30-Day Shred!) After six months of working out sporadically and about two months of barely working out at all, I’m finally getting stronger. I’ve even returned to a few kickboxing and TRX classes here and there.

But, of course, I’m going to have to take a long break again. So I also feel as if I should be working out more. Sometimes, I’ll sneak in some yoga, but I’ve usually been doing just the 20 minutes—and even that’s been hard to work in. Where does my time go?

I also feel as if I should be out having fun, though all this snow and cold makes me want to stay in and hibernate. And when I am out, what constitutes enough fun when the next few months are going to be no fun at all? There isn’t enough fun to be had. Am I failing at fun?

I picture this elusive fun as something like Mötley Crüe’s “Girls, Girls, Girls” video (though I’m not particularly comfortable with strippers or motorcycles) and Bananarama’s “Cruel Summer” (filmed not far from where I live, in much warmer weather, years ago). I should be carelessly frolicking or maybe doing something debauched right now. Instead I am inside, blogging, after working all day and doing my 20-minute workout.

There’s a perverse part of me that wants to see what I can get away with before my hospital stays. Sometimes, it’s all-or-nothing with me. When the radiology oncologist told me that I’d have to eat heart-healthy for the rest of my life, I wondered, “Should I just eat a bunch of double bacon cheeseburgers until then?”

I should be dining like a medieval king, eating giant turkey legs, swilling mead and making jesters entertain me. Tonight, I have veggie chili, tea and the cats—oh, and Homeland, which I’m catching up on. I should be living like Marie Antoinette in that Sofia Coppola movie, before the beheading. Mile End deli is having a poutine week, so I might indulge in that at some point.

I feel all this pressure to work, workout and have fun before the unknown fatigue and nausea of the next few months. Aside from that, another main factor, according to the doctors and nurses, is boredom. Apparently, I’m better than I thought at hiding my lazy streak. Everyone seems to be underestimating how good I can be at doing nothing.

I’m glad that all the hard work I’ve put into appearing hard-working is working. People assume that doing nothing will bother me. I know that, since I say I’m stressed out about having fun, it doesn’t seem like I’m capable of relaxing, but that really is my natural state.

I achieve a delicate balance of hard work and utter laziness. A few weeks ago, I worked from 9 am to midnight, with the exception of a radiology appointment. (Even at the appointment, before seeing the doctor, I had my laptop out, working on a last-minute assignment.) And I did my quick 20-minute DVD, which is essentially working out really hard so you don’t have to work out as long. Later that evening, my idea of good planning was wearing a navy T-shirt because we were having pasta, and I thought there was a good chance I’d drop some on myself. So on one hand, I got a lot done, but on the other, I’m too lazy to properly feed myself.

Last week I achieved my main sloth goal, which was to not leave the apartment during the deep freeze. I also managed to see some friends who I haven’t seen during my hibernation. One of them lives just a few blocks from me and when I finally emerged from near hermitage to go to chemo on Friday, she lured me over with cookies.

That’s about as crazy as it gets around here, before my months of being somewhat of a shut-in begins. I’ll be enjoying time with my boyfriend, friends and cats (sadly banned from hospital visits) before my time of rest and recovery. However, two friends gave me a cat totem to take with me in lieu of my cats, and my boyfriend’s mom made me a blanket with a cat pattern, so I can be properly identified as a cat lady in the hospital.

This week, however, you will probably not see me cruise by on a motorcycle or dancing on rooftops or throwing bananas at cops—at least not if this snow prediction is accurate.  I’ll have to save that for after the transplant.

10 Tattoos

If you would have told me that, at 36 years old, I would drink a few cups of red stuff that promised to be radioactive and then get nine tattoos, I would have been surprised. That seems like something that should have happened in college, when I regularly consumed drinks with names like Windex, the Bettie Page and Mind Eraser. I was 20 when I got my first — and only, until yesterday — tattoo, a small Libra sign on my shoulder.

The whole experience of my PET/CT scan and radiation prep was a little like being in my early 20s. At one point, people drew on me with markers, like I was the first guy to pass out at the party. I also spent some time lying in a bag full of chemicals with a piece of masking tape holding my chin up, as if I were some sort of performance artist. (This also seems like something I could have done for an artist friend — I can see someone asking me to lay in a bag of chemicals to make a mold and agreeing.)

What’s even more surprising is that I had forgotten a lot of this was supposed to happen yesterday. It was all explained to me a few weeks ago, and then I promptly forgot about the tattooing and molding part of my radiation oncology appointment.

When I arrived, I changed into a navy hospital robe, which I later discovered was the less chic of the two versions available. While others seemed to have sleeker gowns with white piping, mine was a plainer, droopier version. I’d noticed the other robe in the pile in the dressing room, but had thought it wouldn’t make much difference. Perhaps I am placing too much blame on my robe. I’m not very good at tying the back, and I have a knack for looking slightly disheveled, even when I’m wearing clothes with buttons and zippers.

Sitting around in robes with a bunch of other people with shaved heads and cropped hair makes me feel as if I’m a monk.  Or maybe in a cult. Wait in these outfits we’ve provided so we can make a mold of your upper body, then we’ll give you a red drink and tattoo a symmetric pattern on your body.

The initial explanation of the mold sounded like I was going to be vacuum-sealed, but I laid on top of a bag of warm chemicals for about 15 minutes until it hardened to make a mold for future radiology appointments. They put a piece of masking tape across my chin and attached either side to my arms, which were above my head. All those savasanas at the end of Bikram yoga class came in handy as I had to lie still.

My veins remain tiny and uncooperative, but the nurses found one for the IV. Then it was finally time to drink the red fluid. “Raspberry,” the nurse noted. Again, I asked if there were other flavors, but no, that’s it. After not eating for more than six hours, I find myself looking forward to my raspberry radioactive beverage.

Then it was time for the CT and PET scans. Since the contrast injection sometimes burns, they slowed it down a bit for me. (Last time, it caught me off guard when it hurt.) They checked on my comfort, but since my chin was again taped and strapped up, I could mostly just grunt that I was OK. The worst part of the scan, for me, isn’t even staying still for so long; but it’s hard not to fall asleep. When I do start to nod off, my arms move then I wake up, alarmed. So I’m usually left a little drowsy.

I was nervous about the tattoos. I should mention that I passed out when I got my first tattoo, the little Libra symbol. The tattoo artist had told me to let him know if I felt nauseated or light-headed. “I feel funny,” I announced, and then the next thing I saw was the bottom of a bucket, which my head was in. I emerged from the bucket to see the friend who had accompanied me, red-faced and laughing with unbridled mirth. The tattoo guy said that people pass out from an adrenaline rush and he’s had 300-pound linebackers pass out on him. It’s possible that he was lying to make me feel better, but he didn’t seem like the type.

Still, I hadn’t had the desire to get more tattoos. I just couldn’t think of anything else to get, or where to get it. Even when I dressed at my most outrageous, there’s a sense of conservatism that pervades my wardrobe. Ever the goodie-goodie, even when I’m trying to be cool. So when it came time to get a tattoo, I wanted something that could easily be hidden. I was mindful that I’d need to get a job someday. Now, of course, tattoos are more acceptable, but even then, I wanted to be rebellious in the most cautious way possible.

“How many?” I asked yesterday, as they took measurements and drew on me with markers.

“Nine,” was the reply. Nine?

“Is this going to hurt very much?” I asked. It was the same question I posed years earlier to the man wearing a leather vest with sleeves of tattoos (before I passed out). That guy had assured me that if it hurt too much, people wouldn’t go back for more tattoos.

I was assured it would hurt less than the tattoo I got 16 years ago and even less than a finger stick. I expected some sort of fancy tattoo gun, but it looked more like an ink pen. “Like a prison tattoo?” my boyfriend asked later.

I guess. I’ve never been to prison. I imagine this was much more sanitary. But it didn’t hurt much, to my relief. I got three down the middle of my body, two on each side and two on my legs. They explained that they don’t want to make them too big, as they’re permanent, but they also have to be able see them during your radiology appointments. They’re small dots, like the one Tom Hanks got in an episode of Bosom Buddies to impress Sonny when he got drunk with Amy. (Perhaps my fear of tattoo pain stems from watching this episode that apparently left quite an impression on me as a child.)

The next step is to wait for the doctor to call with the results. I have a confession: I can view the results now online, but I’m going to wait for the doctor to call. I may have 10 tattoos, but I’m not tough enough to read the lab results on my own.

Choose Your Own Adventure

When I was a kid, Choose Your Own Adventure books were all the rage among the children of St. Rita’s for awhile. In case you’re not familiar with them, here’s the deal: All the books start out the same, and you’re the star of the show. Maybe you’re a time-traveler or a space explorer or a detective. Then there comes a point in the story when you have to make a decision: Do you rescue the princess or continue exploring the castle? Do you scale the cliff face or try to make your way through the mountain passage?

Depending on your choice, you would turn to the corresponding page and continue the story while facing the consequences or your decision. Sometimes you ended up adrift in space. The End. Or your story continued and, if you chose correctly, you’d end up the hero.

Before video games were ubiquitous, these interactive books were pretty exciting. Years later, I even bought a funny version about dating called Night of a Thousand Boyfriends as holiday gifts for friends. I read that book in a few hours.

As a child, though, these books filled me with anxiety. I hated getting eaten by the saber-toothed tiger. I’d sometimes keep a finger on the decision page so I could go back and reverse my choice, or at least explore the other options.

I’m still not big on making decisions. I waffle back and forth, weighing my options. It doesn’t matter if it’s deciding what to have for dinner or whether or not to take part in the Brentuximab vedotin trial.

If you believe in astrology, I can attribute it to being a Libra, the most indecisive of all signs. It’s supposed to be because Librans seek balance.

Either way, it drives my boyfriend crazy. His question, “What do you want to do?” is invariably met with, “I don’t know. What do you want to do?” At restaurants, I often wait until the last possible moment to decide what I’m going to order. Then I’m often plagued by what I didn’t get. Should I have ordered the pappardelle instead?

Oddly, when it comes to big decisions, I try to not think about the what-ifs. As someone who has wanted to get this whole cancer treatment out of the way as quickly as possible, my first instinct was to go with the more conventional augmented ICE treatment for relapsed or refractory lymphoma. It’s six days of actual treatment over a month’s time—but I opted for the Brentuximab trial of three months, knowing that I still might have to do the ICE.

My last Brentuximab treatment is Friday and my scan is Monday. With a success rate of only one-third for the trial, the doctors are mentally preparing me for the ICE. I don’t regret the Brentuximab, but I still have the nagging thought, “You could be done by now.”

Then again, if I’d just gone through with the ICE, I would have wondered about the Brentuximab.

So, in a way, I made the less risky decision, as I’ll likely do both. Since I’m in the only group to receive treatment for three months, we’ll see what happens. My rashes stopped occurring. Does this mean it stopped working? Also, I’ve been getting weird pain twinges in my neck and chest that worry me.

Either way, I won’t get eaten by a prehistoric cat, but on Monday, my story diverges. I really don’t have much choice, though. The next step depends on the PET scan. If the PET scan isn’t clear, turn to option one. If it is clear, turn to option two.

Option one. If my PET scan still shows cancer activity, the likelier of the two scenarios, then I go on to augmented ICE. This can happen as soon as the weekend after this coming one.

The ICE, from my understanding, is basically three days in the hospital of hardcore chemo, 21 days at home (feeling tired, I’m told) and then three days in the hospital again for some more chemo. In between, I’ll have my blood checked regularly to make sure I don’t need transfusions.

This also means that they’ll put in a catheter in my upper chest to administer the chemo and they’ll leave it there. Mostly, I’m grossed out by the thought of having something hanging out of my chest. (I mean, they’ll tape it up, but eek!) Then I get another PET scan to see if it’s finally clear, and move on to the next step…

Option two. When my PET scan is clear, then I get my stem cells collected in a process that takes about two to five days—with some home injections, like the blood thinners. Not very painful, unless you count the heebie-jeebies. I can’t remember everything the doctors told me, but I think when you’re ready, they hook you up to some kind of machine that filters your blood.

It sounds like I imagined that old—untrue, as it turns out—urban legend about Keith Richards undergoing a blood change to beat a heroin addiction. Although I guess it’s still trendy to get IVs, if you’ve read the latest on Michelle Rodriguez and Cara Delivingne. (An aside: Right before the couple went semi-public after hanging out at a Knicks game and smoking electronic cigarettes, I dreamed I was hanging out with Delivingne at a fancy Manhattan apartment and had dropped a real cigarette in an indoor pool, so I may or may not have a Being John Malkovich-style portal into Rodriguez. I had planned to figure out how to control this portal so I could get out during my hospital confinement, but if she’s also hooked up to IVs, then what’s the difference? Sigh…)

My stem cells will be harvested so they can give them back to me after the chemo wreaks havoc my bone marrow.

After that, I start my five days of outpatient radiation. It’s twice daily, though, so I’ll have morning and afternoon appointments. I’m told the actual radiation will take only five minutes, but of course, the appointments are longer.

Then I am admitted to the hospital for five days of inpatient radiation, followed by three weeks for the autologous stem cell transplant for a total of 26 days in the hospital. That’s a long time. Three weeks seemed long, but the extra five days pushes it to a month mark.

They keep you in the hospital for those last five days, because I guess you don’t feel that great. My doctor mentioned something about possibly feeling like you have sunburn inside your esophagus.

For the remaining three weeks, the first week is when the high-dose chemotherapy will be administered. (And, if I don’t already have a catheter to administer the chemo, they’ll put one in at this time.) According to what the doctors say, patients typically feel OK this week, but then feel exhausted the second week. So you’re there the remaining two weeks to rest, recover and keep you away from germs. Part of that time, I’ll be in a form of quarantine. At some point, they give you back your old healthy stem cells.

And then I’m done. Kind of. I’ve been told it takes up to six months before you feel like your old self. Since my Hodgkin’s lymphoma seems particularly stubborn, there’s always the chance it will come back.

So when people ask me what’s going on, I don’t know what to say, mainly because I don’t know. I have a long hospital stay coming up, that’s for sure.

Right now, I’m savoring my last week or so of near normalcy before facing the worst of the treatment. And I wait for the page in this adventure to say THE END.

Please note: I’m running out of photos. Instead of a saber-toothed tiger, here is a yawning cat. A poor substitution, but considering no photos of saber-toothed tigers exist, not bad.

On Cancer Blogging

I’m extremely late to the party on this. Most days, I’ve been working from about 9 am to 9 pm, and by the time I’m done, I can’t look at a computer screen anymore.

But I still think about the weeks-old controversy surrounding the Emma Keller column in The Guardian, in which she asks: “Forget funeral selfies. What are the ethics of tweeting a terminal illness?” It’s a opinion piece about Lisa Boncheck Adams’ Twitter account, in which she tweets about dealing with stage 4 breast cancer.

I didn’t get a chance to read the post before it was taken down, but according to snippets I’ve seen on the Internet, it wasn’t the questions about the morbid curiosity that got people upset — it was Keller’s diagnosing of Adams with a case of TMI. In response to the backlash, Emma Keller’s husband, Bill Keller, also responded with his own column in The New York Times.

The whole thing seems to be fraught with misunderstandings and misinterpretations of other people’s words and intentions. It played out in major convention and social media outlets, but I’m sure people with opinions like the Kellers whisper similar criticisms to friends about cancer patients’ choices on how much they divulge. Since I didn’t read Emma Keller’s piece, I can’t respond much to that, but this got me thinking about cancer blogging.

What I took away from this recent controversy is something that everyone already knows: Everybody deals with cancer differently. And most people have opinions on the way you should deal with it or they way her or she would deal with it. I’m not sure there’s a wrong way to cope. Well, I guess Walter White probably could have handled things better in Breaking Bad. I hope we can all learn from his mistakes and have disassembled our meth labs.

Also, you shouldn’t piss a bunch of people with cancer off. And it’s fine to offer advice, but leave self-righteousness at the door.

At some point, you get tired of absolutely everything to do with cancer, including being told what to do. I almost had a meltdown this weekend after a museum employee told me that my bag was too big to carry through. She did it nicely, but I’d spent the whole time there trying not to get reprimanded, because it seemed like everyone was getting in trouble for something. I almost burst into tears, and when my boyfriend asked me what was wrong, I said, “I’m so tired of people telling me what to do.” (Yeah, I had a rough couple days there.)

Today, I think TMI depends on what you want to know. Twitter is, by nature, full of TMI. Lunch photos. Tweets from companies trying to get you to buy their products. Selfies of so many duck faces. Politicians’ private parts.

My own Twitter is mainly promotions of sites I’ve been working on (check out the article I wrote about fitness/bands/healthy eating/insurance/travel, etc.), followed by cat photos (Facebook is my cats’ main social medium). There are also tweets of inside jokes to two of my former cubicle neighbors, one of whom isn’t on Facebook. And the last category is angry tweets. (The fancy dress I bought on sale is poorly made! This venue is overbooked! Fandango ruined Christmas!)

It doesn’t reflect this blog or even retweet anything from my Pain in the Neck Twitter account. My mom discovered my Twitter feed, linked to a story that I wrote, and she asked me if I was writing about having cancer. So, like a teenager whose diary had been discovered, I just denied everything. She might be reading this right now for all I know.

She doesn’t think I should tell anyone about having cancer. She’s in the cancer-should-be-kept-to-yourself camp. My family wasn’t big on talking about stuff like this. I wouldn’t say it’s a bad thing; it’s just how we are. In fact, I don’t really talk about cancer much in person. That’s why it’s nice to have a blog.

I’m an introvert. Just borderline, if you believe the Briggs-Meyers test; it’s as if I want to be an extrovert, but I can never shake my introvert ways. I stay in one place at a party and wait for people to come to me, often in a nice cocoon of people I already know. Most often, this position is by the snack table or in a comfy chair, but that’s because I love snacking and sitting.

And lately, at parties, sometimes I’ll talk about cancer, but really only if someone asks. Mostly, it’s just a rundown of what’s going to happen. A lot of people think I’m done with treatment, so I feel bad telling them that the worst part is yet to come. I finish up the Brentuximab trial, followed by a hospital stay for at least 26 days, including inpatient and outpatient radiation and a stem cell transplant. Plus there’s possibly an additional month of treatment with augmented ICE.  The blog has been a nice outlet for me to deal with things and keep people updated.

When people find out that I still have several more months of treatment, they seem apologetic. A lot of them say, “Oh, I didn’t know!” That’s because I haven’t really talked about it much. I mostly keep it to the blog. As someone who personally falls somewhere on the spectrum between the Kellers and Adams as far as information-sharing, I keep my cancer news mostly here, in this public forum that feels strangely private.

I find other people’s cancer blogs informative and helpful. I don’t delve too much into them, mostly because I just don’t want to freak myself out. But I know other people’s stories are there, and if I want to read about their experiences, I can. As one blogger wrote in Gawker in a much more timely response to all this, blogging is therapeutic and cancer is nothing to be ashamed about.

If Emma Keller calls into question people’s morbid curiosity, including her own, we’re all guilty. Who hasn’t found themselves reading someone’s blog for that very reason? Every now and then, I click on something friends with children share on Facebook and find myself reading a parenting blog, fascinated at something I know nothing about that sounds truly terrifying. I’ll read about all the ways you might physically or mentally damage offspring by not strapping them in properly or by not watching them every single second of the day and night or teaching them the wrong thing. Just a little bit of scary reading to sate my curiosity.

But I think Adams’ tweets serve to inspire more people than it might upset. I’m glad to see she’s gotten so much support.

It doesn’t seem like the Kellers are saying you shouldn’t be able to blog or tweet, unless I totally misread Bill Keller’s column. And they have a choice as to whether they read it or not. I would like to not have cancer. You can’t always get what you want.

Busy Busy Busy

It’s been a month since my last post. I’ve been busy, and the last thing I’ve wanted to do is spend extra time at the computer when I’ve been typically working from 9 am to 9 pm.

It’s been busy in a mostly good way, though I feel the hypocrisy when I edit things on the importance of downtime and relaxation or making time for yourself. Like everyone else this summer, I shared and cited “The Busy Trap” column that ran in The New York Times, agreeing with its wisdom while still feeling guilty when I’m not doing something.

Busy in a good way means having work and starting on a new project. My boyfriend urges me to take it easy, but I’m nervous about the upcoming transplant. I don’t know how long I’ll be sidelined, and I feel as if I should take on as much work as I can now, to save up for later. Sometimes I feel like I can go only to extremes, all-or-nothing. All work, no play; all play, no work.

I’m also back to working out. As I did before I got sick, I try to work out every day and invariably fail, so I end up working out four or five times per week. Since I still am not allowed to wallow in the bodily fluids of others and must avoid germs, I generally stick to a kickboxing class or abs class once a week and 20-minute workouts at home. It’s been a challenge getting back to working out after a sporadic spring and summer and almost a year of not doing certain exercises. (After a year of not doing burpees, I felt as if 10 would kill me.) It’s strange to remember being able to do something and then just not be able to anymore.

I bought a jump rope and jumped outside on Sunday, during the unseasonably warm weather. Mostly I stood around wheezing and whimpering.

I’m grateful to have the energy to work out, though there are still some days after chemo where I’m wiped out.

Today, for instance. I’m beat. I blame the 8 am appointment and not being allowed to have coffee. I’m supposed to stay hydrated to plump up my veins for chemo, so the day before, I drink plenty of water and I don’t drink coffee. I was going to have coffee anyway this morning and pretend I forgot, but my boyfriend, the caffeine police, reminded me as it was brewing. Thwarted.

So I was a zombie today, struggling to stay away through my appointment, enviously eying the waiting room coffee during the hour or two I waited before treatment.

I feel much better than last week, when the anticipated Brentuximab vedotin rash appeared. As part of the clinical trial, I’m among the first to experience the rash that appears on your hands and elbows, and sometimes the hips. The drug is usually given to people after stem cell transplants, if the lymphoma returns. In this trial, they are seeing how it works to eradicate cancer activity before transplants. Last week, I learned the rash doesn’t show up in post-transplant patients, but it is appearing in a lot of the people in this trial. They think it might be something to do with the immune system.

I feel sorry for my faithful immune system. Even when it was barraged by chemo and not as strong, I still rarely got sick. I got a strange one-day cold in the fall and a brief cold in the summer. Now it’s trying to alert me that I’m being poisoned. Thanks, good buddy. I know.

This does worry me that my immune function will somehow be changed after the autologous stem cell transplant. From what little I know, it sounds like they break you down and rebuild you, like a superhero. They don’t put you in quarantine for two weeks just for fun. My poor super-immune system doesn’t know what’s in store for us.

Several weeks ago, I had a rash everywhere. I think I’m the first for this symptom, which sent me to Sloan-Kettering Urgent Care, a precautionary measure.

Last week’s rash though, snuck up on me. By the evening, when I planned to work out, my knees and elbows felt stiff. I felt old. Not the same type of old as when my friends post photos of their kids on Facebook or when I tell people about my first job after college, where we had only one computer with the Internet. This stiffness was like suddenly being 80 years old. (Or so I imagine.)

My skin felt tired. It’s hard to describe. When the largest organ of the body steps in, I decide to take it easy. Instead of working out, I sipped tea and watched TV.

The next day, as I surveyed my swollen joints and a hand that looked bubbly from the reaction, I started on my methylprednisolone.

I’m not a huge fan of taking medications. I barely take aspirin. I don’t understand the appeal of recreational drugs. I’m a goodie-goodie. Years ago, when I worked at the company with one Internet computer, someone told me that he made T-shirts with pot references, and I said, “Oh, like 4:30?”

He replied, “Yes…but it’s 4:20.”

Drugs seem to lower productivity. Who has time to sit and stare at a wall and see if faces appear? The whole thing sounds like a waste of time. It was like skipping classes in high school. You just have to make that work up later, and it’s not like anything else very exciting is going on at 11 am on a Tuesday in the suburbs when you should be in class. I’m a nerd to the core.

Steroids, however, are different. I was on Prednisone to reduce swelling when I felt my worst in March, and I loved it. I had more energy and woke up at 6 am without fail. I went from feeling terrible, probably the worst I’ve felt throughout this whole experience, to feeling superhuman. Then I saw the appeal. I was like Alex P. Keaton in that very special episode of Family Ties, when he gets hooked on amphetamines. I was on Prednisone for a week or two, but I look upon that time fondly.

This past Saturday and Sunday, I had extra energy and got some work done. I would have built a guest bedroom before my mom’s arrival, or a roof deck for our New Year’s Eve party, but my dosage was lowered before I had time.

Yet I don’t think I’m in danger of following Alex P. Keaton. Or becoming involved in a high-profile scandal, since I don’t cycle or play baseball.

After a few days, the swelling went down and the rash cleared. I’m waiting to see if I need to take them once again, still reluctant to take anything.

Right now, I’ve been having random pains in places where nothing is located. My shoulder. A place near my rib in my upper chest. But aside from the random chemo pains and the highly treatable rash, things are good.

So it’s been a good type of busy. There’s also been the holiday stuff—parties and entertaining. My mom was in town, so I had three days of forced relaxation, which I needed. There have been holiday parties. There’s even been karaoke.

Of course, there are even better ways to be busy, like planning a tropical getaway and drawing up mansion plans. I bought Powerball tickets and did not win. (This could be a lie, because if I did win, I wouldn’t tell anyone. Someone who worked on a reality show about lotto winners told me they’re never happy unless they remain anonymous. I guess people bug them for money. My solution, as I told my boyfriend, would be to hire beefy goons to “take care of” these nuisances, and he just said that I worry him sometimes. But anyway, you’ll just have to take my word for it. If I’d won, I probably would have bought some new boots by now.)

So I could be busy counting my millions and that would probably be better. (Although there’s the added stress of hiring the goons.) But for now, this is fine. I can busy myself coming up with a list of superhero powers I’d like to receive with my stem cell transplant. With my recent swollen Hulk hands, I think I’m going to see if I can get some Hulk powers.

Giving Thanks

This won’t come as much of a shock to those who know me, but I’m not usually one to make gratitude lists. It’s not that I’m not grateful. I try to realize how lucky I am every day. But my Facebook feed is more likely to have my top 10 Halloween or summer songs than a Thanksgiving gratitude countdown.

In light of this crazy year, however, it’s probably a good time to keep track of all the things I have for which to be thankful. There are many. Plus, according to this article on gratitude, being thankful is beneficial to health and happiness, and every little bit counts, I guess.

flowers

All of you. Shucks. I mean it. Words are my business, yet I don’t have enough to show my gratitude for your kind words, visits, emails and notes, and your outpouring of generosity and support. So these two will have to do: Thank you! I’ve always known that I’ve been very fortunate to meet amazing people over the years, and the last six months have just shown me that I’m right!

I’m also grateful to my family and, of course, to my boyfriend, who has accompanied me to appointments and put aside his squeamishness to see IVs put in and blood drawn. He tries to do his best when I’m at my worst and am depressed, sad or scared. He’s stepped in wherever he’s been needed, from shaving my head to stopping me from assaulting cabs after surgery.

I’m in good hands. My mind is at ease knowing I’m in the hands of the capable staff at Memorial Sloan-Kettering, from my oncologist to the nurses who have to find my veins to the friendly front desk staff. It’s not only that they’re good at what they do, but everyone’s always nice and upbeat, and when you’re in a fairly scary situation, it makes such a difference. (Especially after going to a few places during the beginning of my diagnosis where I wasn’t treated with respect or even as a person.) I was talking with a few people at the Visible Ink Fall Writing Festival for patients (more on that in another post) about this and we all agreed we always felt reassured that everyone there was taking good care of us.

I have health insurance. After the company I worked for folded this summer and I went freelance, things looked a little grim when I found out that I wasn’t going to get COBRA, as promised. But it looks as if I’ll be insured through the rest of this year and will get a new plan next year. I can’t imagine facing the transplant without insurance.

cats

I have work, and this is the view from my office. Job searches are the worst. Losing my job this summer, while I was in the middle of chemo, gave me more time to dwell on everything, and looking for work while you’re not feeling 100 percent is even less fun. While freelancing is always a little uncertain, I’ve had the chance to work on some fun stories and projects and to work with some great people. My old sometimes-office several years ago had a view of the Chrysler Building, but working at home in pants without zippers and with feline assistants is pretty great. And my boyfriend has a new job as well, and he works mostly from home too.

nyc

I live in the greatest city in the world. New York City is my favorite place. This wasn’t always the case. When I first visited in the mid ’80s, a 9-year-old from the suburbs didn’t quite appreciate it. My grandma always loved NYC, and I wish she could have seen me move here. She may have even joined me! I haven’t been able to travel much during treatment. The docs want you close to the hospital, just in case. But I can’t think of any other place I’d rather be. (In January and February, however, I’d probably like to be somewhere tropical, but right now, I’m OK with staying put.)

I can work out again! (For a little bit.) I was taking it easy the last few months of ABVD, and for the past month, I’ve been easing back into a routine with a few kickboxing classes here and there and yoga at home. I’m still under orders not to overdo it. And I’m still supposed to avoid germs, so I won’t be joining a gym (or maybe even going back to boot camp) for awhile. Sadly, being around so much of other people’s bodily fluids is also off the table, so Bikram yoga (my absolute favorite type of yoga) is still on hold. But I am going to a few classes where I don’t have to touch equipment, and I have my home workouts to do. I’ll obviously have to take three weeks (and longer after that) off from working out. These long stretches of not exercising from chemo, surgeries and procedures aren’t ideal, but I’m going to try to build my strength up for the next few months for the fight ahead.

I have control over the space heater. Mostly. I came across this study that found cold environments make cancer cells spread faster, and that’s my argument this winter for when I position myself between the apartment heater and the space heater like a slice of bread that needs to be toasted.

towel

I have a new bath mat. This probably doesn’t rank with the others, but our old bath mat towel was in pretty bad shape. And this is coming from someone who never buys towels. I had maybe purchased a few in my adult life, but until I acquired my boyfriend’s towels, I never knew towels could be so soft and thirsty and good at drying things. I don’t remember my family ever buying towels. I know they did at some point in the early ’80s when they went to a Cannon outlet. They don’t make towels like they used to. And they don’t make cheap towels like they used to, either, so you can see my reluctance at buying a new one. (If I had a time machine, in addition to going to see great bands in their heydays, I would also pick up some towels.) So the purchase I made yesterday, to avoid Black Friday madness, is a pretty big one for me.

I know there are things I’m leaving out. This latest treatment doesn’t have many side effects, so I hope to have as normal a time as possible before doing the stem cell transplant. And even with the ABVD this summer, I managed to go to concerts, to the beach (shaded by an umbrella) and generally do my favorite things. My preferred winter activity is staying inside, so I’ll be relaxing. Aside from the whole cancer thing, I still feel like one of the luckiest people ever.

Biopsies, Bone Marrow and Brentuximab

Well, I’m not going to bury the lead, as we would say in journalism classes. My surgical biopsy results are what I expected, but not what I hoped, and I still have some remaining Hodgkin’s lymphoma. The official term is refractory. I started chemo again yesterday.

The usual second-line treatment is ICE (ifosfamide, carboplatin and etoposide), administered over three days in the hospital, twice, 21 days apart. Instead, I’m taking part in a clinical trial of Brentuximab vedotin, a fairly new drug that’s being studied as a less toxic alternative to ICE and a line of treatment doesn’t require a hospital stay.

The goal is to get a PET scan that shows no activity before an autologous stem cell transplant (ASCT), a three-week hospital stay that involves high doses of chemo. Beforehand, stem cells are removed from your own blood and preserved, then given back to you after chemo to prevent bone marrow failure and produce healthy new blood cells. (This part doesn’t sound like any fun at all.)

I really just want to get it over with, so my initial leaning was ICE. The Brentuximab vedotin’s side effects include a hand/arm rash, which sounds OK to me, but there’s also neuropathy, something I’ve been experiencing lately. My fingers suddenly go numb and turn a waxy yellow color, especially when it’s cold. The doctors think it might be a circulation problem left over from the vein irritation of the ABVD.

And then there’s the vein damage. The other day, the term “like trying to get blood from a stone” occurred to me, as the nurses tried to get blood. I may as well be made of granite. They even got the veins, but they just wouldn’t give up any blood. And when things are injected now, it hurts more often than not. My veins are cranky, and the treatment is every week for three weeks, with one week off, over the course of three months. Even though this treatment is less toxic, I feel for the nurses and my veins, which have always been proclaimed “tiny” and are now staging a rebellion against being poked and punctured any more.

So I’m slated to get a port—something I’ve been avoiding. I still want to avoid it, in fact. I’m not sure why—most people say that there are no restrictions on exercise. I probably should have had one put in before my veins were so far gone, but I didn’t anticipate more treatment. And it’s not like I’m not used to having a weird bump near my neck; that’s how this whole thing started.

There’s the chance that after three months of treatment, I’ll have to do the ICE anyway. I don’t know why I feel pessimistic. The last treatment didn’t fully clear the cancer, but I’m in a study with my fellow unlucky refractory/relapsed peers. Can I be among the luckiest of the unlucky? Or be doubly unlucky?

Yet I’m going to take part in the study, hoping that I can avoid more time as a hospital patient than necessary.

I found out the results of the surgical biopsy last Friday evening. By the time I left the doctor’s office, it was after 7, and I was meeting my boyfriend at 9:30 in Chelsea to see a movie. I decided it wasn’t worth going back to Brooklyn just to turn around and come back to Manhattan, so I found myself walking from 64th Street to 23rd Street—a therapeutic, mini-tour of Manhattan that took me past Radio City Music Hall, Bryant Park and Herald Square.

It also took me past the Uniqlo flagship store, where I bought a tunic turtleneck, to cover up my still-healing mediastinoscopy wound for when I went into the office. You don’t realize how many turtlenecks you don’t own until you have a bloody bandage on your neck. The mediasinoscopy went well, though I felt it a little more than my first surgical biopsy. I didn’t even have the energy to assault any cabs that wouldn’t take me to Brooklyn right afterwards.

This time, however, I was aware of the weird feeling before the anesthesia. Whatever they give you before that makes you feel funny, then not remember anything. I still worry that I say the worst insults I know or exclaim horrible things during this not-remembering time. I have no idea why I would do this, but I worry anyway. Some of the last things I remember saying, as I pointlessly struggled to stay cognizant, were, “I feel funny again, like last time,” and, “Goodbye, everybody!” to the staff in the operating room before slipping off.

The weekend was a bit of a whirlwind, since the site I’ve been working on launched Tuesday. I worked all of Saturday afternoon and on Sunday, from late afternoon until midnight, so I feel as if I didn’t have time to process the news. But I would say this past summer’s time of unemployment was far worse. I don’t need time to dwell.

Unfortunately, it finally sunk in as I lay in bed on Sunday night. While my eyes felt strained and sleepy as I finished work for the day, they kept flying open as I struggled to fall asleep.

So the website launched on Tuesday, while I was launched into a series of appointments and tests. Since Hodgkin’s lymphoma doesn’t usually spread very rapidly, I could take some weeks before starting treatment again. But I’m staying here for Thanksgiving, and there’s no point in delaying the inevitable. I’ve had a little over month of near normal life again, and I don’t want to get used to it again, just to have it taken away.

I needed to take tests I took before I started treatment last time. On Tuesday, I had an echocardiogram, bloodwork and a PET/CT scan. During the echocardiogram, I had time to once again ponder hospital gowns. One of my friends who recently had surgery wondered why they had pockets. Someone suggested it’s for equipment and monitors, while someone else gave the explanation of hospital trinkets. I assume I will earn some trinkets during my three-week stay.

Before my PET scan, instead of the premixed red Gastrografin drink, the nurse mixed it himself—water, the dye and the red raspberry flavoring. So I finally had the opportunity to ask if red raspberry was the only flavor: It is. (One of my burning questions answered.)

I had a CT scan this time, too, like I did before starting treatment, so I had to get another injection. It stung a bit, and my legs automatically flew into the air and pedaled a few times, helplessly trying to flee, unaided by the rest of my body, which was strapped, hooked and wedged into place. It hurt only for a little bit, then the feeling I from the last CT scan kicked in. The nurses describe it as feeling as if you have to pee; it’s warm, like you’ve been drinking whiskey through your belly button.

I also had to have another bone marrow biopsy, which sounds much worse than it is. After I had my first one, I read a few cancer patients’ blogs that said they weren’t offered any numbing agents. I don’t know why anyone would do that, but if someone said they were going to poke around inside my bones without any lidocaine, I’d run away.

Oddly, the lidocaine is the worst part. The injection stings, and there’s another that’s a bit deeper that feels strange, but stings less. The actual collection just feels weird—a deep pressure, and a bit of a hollow feeling. They take it from your lower hip/back area, and it’s just a bit sore for a few days. The first time I had to have it done, my oncologist said she could do it right away, there in the office, adding that she likes to do it that way, so people don’t have time to think about it. I agree—thinking about it is much worse than the actual procedure.

After my barrage of tests, I had a day off (from tests at least) on Thursday, when I had sushi for lunch and oysters for dinner. My old dietary restrictions are back: No raw food out, no sushi or oysters, no cold cuts.

Friday, I saw the doctors and started treatment. The Brentuximab itself takes only half an hour, and there are supposed to be very few side effects. I was kept an extra hour to make sure I didn’t break out into a rash.

So that’s where I am. I started this post almost a week ago, and I haven’t had a chance to finish it—and then I kept having more to report. Thanks to all who have checked in and sent letters and notes of support!

I admit that when I returned home on Wednesday from my last round of tests, I had a good cry and threw myself a little pity party. This has been like seeing a light at the end of the tunnel, only to find out that it’s not a way out, but instead a shaft of light coming from far above, an unreachable place. So I have to choose another dark tunnel, knowing that there’s a light at the end, but I’ll have to scramble over some unknown, sometimes frightening, territory. Friends and family will offer bright spots along the way. Months from now (how many, I’m not sure), I’m slated to arrive at the end of this journey many others have taken. Temporarily worse for the wear, but finally free.

Halloween Heisenberg

As a former goth girl, Halloween has always been a special time for me. It’s when everyone else finally caught up with what I’d been up to all year.

Of course, I’ve been less goth since my teens and early 20s, but I still enjoy wearing black and listening to Bauhaus and Skinny Puppy, especially in the fall. While some people associate fall with squash and leaf-peeping—a term that I just learned this year and sounds a little lewd for such a wholesome pastime—I break out my goth/industrial favorites around this time. There’s “Release the Bats” by the Birthday Party, “Bela Lugosi’s Dead” by Bauhaus, “Halloween” by the Misfits (technically punk, but appropriate) and, of course, “Every Day is Halloween” from Ministry.

During my mid- to late-20s, I’d often slipped into a lazy tradition of Josie and the Pussycats, though I spent hours a few years ago sewing timely bed bug costumes. I also dressed up for a few years for my favorite Bikram yoga studio’s annual Hot-a-Ween classes. Since it’s hot yoga, finding a costume that you can sweat and move in for an hour-and-a-half is a challenge, but it’s fun, and people get really creative. In the past, I’ve been Pebbles from The Flintstones (with a leopard-print top and hair bone) and a smartwater bottle, though most people couldn’t tell what I was.

But this Halloween had special meaning to me, since I was bald and no longer confined by my hair. An entirely new look had opened up a host of costume ideas. As, I’d mentioned before, I could be Sinead O’Connor, scolding a host of scantily-clad VMA Miley Cyruses. But I’ve known what I’ve wanted to be since this summer, when I ordered a porkpie hat. I would be Heisenberg, Walter White’s alter-ego on Breaking Bad.

I had my hat, and ordered blue rock candy for my meth and glasses. I bought a green button-up man’s shirt and khaki pants and borrowed my boyfriend’s belt and sunglasses for the full Heisenberg effect. And, of course, I had to buy a beard. I couldn’t find a reddish beard, so I had to settle for a dark one that I cut to mimic Walt’s facial hair.

Like my oyster obsession, though, I’d become a little too focused on the idea of my Halloween costume to the point where I was about to take the fun out of it. We are going to go out and we are going to have fun. I’ve never been into weddings at all and I’m really blasé about most holidays, so I suppose the closest I get to event-freakout moments are around Halloween. At least I get a little scary at the appropriate time of year.

I had a tearful breakdown around the night before Halloween, explaining to my boyfriend why I felt like I was getting a little crazy. I’ve been upbeat about it, but I still lost my hair to chemo. The hair loss really doesn’t bother me very much, and I’ve just been keeping my (bald) head down and marching forward, but sometimes this all catches up to me. I was hell-bent on making the most of my baldness on Halloween.

That day, the main place where I’ve been freelancing was finishing up a big project, and I knew I’d be at their office late. Now, this office is the one place—the only place—I wear my wig. I think most people don’t even notice my hair, since I’m not there very often. Still, I don’t really feel like I should draw attention to myself as the bald cancer lady.

So a lot of the full-time office people dressed up for Halloween, but I didn’t—officially. I was wearing my wig, so I felt disguised. It was weird I was wearing a wig, then taking it off to be in costume.

During lunch break, after purchasing a beard, I decided to get my head re-shaved during lunch break to save on getting-ready time. I popped into the salon closest to the office and approached the woman dressed as a mouse at the front desk. I figured this place would appreciate the Halloween-inspired shave.

Despite the scary nature of the holiday, I didn’t want to alarm anyone by suddenly removing my hair. “I need to get my hair re-shaved,” tugging up a portion of my wig a bit. I got my head shaved, and some nice tingly stuff put on my scalp, donned my wig and returned to work, free of the half-inch of hair that had grown in sporadically.

Since my hair had been coming back a little, I wasn’t sure if I should shave my head for Halloween. But I knew Heisenberg would be a popular Halloween costume, and I knew I had to commit. Would Walter White settle for meth that was only 90 percent pure? No! So I would not be some shoddy Heisenberg. Plus, my hair was growing, but all of it wasn’t growing in yet, and it started to look patchy. (I’m happy to report it’s now all evenly growing in, as is my facial hair—just in time for Movember, though I will probably visit the threading salon.)

At the office, as one thing popped up after the other, I felt my Halloween evening slipping away. When I’d noticed cones going up on the street around lunchtime, I realized that the office was also located along the route of the Halloween parade. If you’ve been stranded on one side of the parade while some of your friends and a party are on the other, it’s no fun; I speak from experience.

So I knew I was racing against the parade clock, as well as my own deadline for getting out of the office in time to go out. By this point, I’d calmed down a little bit and decided that as long as I went out in costume—and took photos, of course—it was going to be OK. I just had to get home and into costume.

I didn’t leave the office until 7:15 or 7:30. I said goodbye to my manager as she walked toward Union Square to catch the train and I walked in the opposite direction to take the F home. Then I realized I was blocked in. I was on the phone with my boyfriend, walking back towards Union Square when I saw my co-worker heading toward me, We realized we were trapped. Sixth Avenue was a loss—even the sidewalks were blocked, so the officer standing guard directed us to another street to walk to the next stop.

I finally got home and changed and walked with my boyfriend, who was dressed as a zombie. And I made sure we took photos, including some with my cats. (As you’ll recall, I’m the sad cat lady who spent an entire evening making Breaking Bad-inspired cat costumes.)

empireempire2

We went to a bar where member of my fitness boot camp were having drinks. I used to work out with them more, but as I’ve been easing back in to working out, I think I should be able to count the hoists of a giant beer mug as reps on Fitocracy for now. (Alas, I’m still not cleared for Bikram yoga, otherwise I would have been tightie-whities Walt for class.) Most people realized I was Walter White, except for someone who thought I was a Hasidic guy, with the hat and beard. I really did look more like a little Jewish man than Heisenberg, especially in a photo my boyfriend took, as we had a late dinner.

walterwhiteeats

I got a few calls from the street! “Hey, Heisenberg!” But perhaps the greatest compliment to my costume was that people thought I was a man. After dinner, we stopped by a place where a friend was putting on a Halloween show and we caught a band dressed as the guys from The Taking of Pelham One Two Three—the 1974 version, not the remake.

As I walked in, I spotted a fellow Heisenberg out of the corner of my eye. I was going to talk to him later, but we didn’t stay long because my zombie companion had to work early the next day. But I overheard my fellow Walter White say to his companions, “That guy did an OK job, with the green shirt.” So from one Heisenberg to another, I consider that high praise.

heisenberg

Me As Famous Bald People

I still need to write about my Halloween as Heisenberg hijinks and my biopsy surgery that took place on Wednesday. But in the meantime, I thought I’d share some photo goofiness. When I first shaved my head, I decided to take some photos of me as famous bald people. I took two of these photos in August, and then when I recently re-shaved my head, I took the other two.

Sinead O’Connor, probably the most famous bald lady of all time. She actually has a bit more hair than this in her “Nothing Compares 2u” video. If I had to dress up for Halloween before my head was shaved, I was thinking about being Sinead O’Connor. I’d wear a black turtleneck and carry around an open letter to Miley Cyrus, and I’d scold scantily clad girls in Miley costumes from the warm comfort of my turtleneck. I may actually go see Sinead O’Connor on Sunday. People will think I’m a superfan! Sinead

Sigourney Weaver from Alien 3. I’m pretty sure I’ve seen Alien, although I get it mixed up with that V TV movie. Anyway, this is me as Sigourney Weaver in that film. I didn’t have any dirt to put on my face, and I was just waiting for my boyfriend to get ready so we could go to the Museum of the Moving Image and not fighting a battle against aliens, so I look less rugged.

Sigourney

Kojak, with a lollipop. I didn’t have a fedora, so I just relied on the raincoat, sunglasses and sucker to carry off this Telly Savalas look. I had gone into the bank to get a Dum Dum and had collected several lollipops, but I ate them. I’m eating one of those ginormous all-day suckers here (grasshopper pie-flavored, if you’re wondering.).

kojak

Walter White, my summer cancer anti-hero. I started watching Breaking Bad in July and caught up just in time for the premiere of the final six episodes. I was Walter White for Halloween. My boyfriend says I look like a little Jewish man (with the beard, not all the time, because that would be weird). I wished I could have found a more reddish beard. Alas.

Walter White

Heisenberg, Walter White’s alter-ego. Actually, I was Heisenberg for Halloween, complete with porkpie hat, blue rock candy meth and sunglasses. I plan on writing a whole post on my Halloween, but for now, here are the pics of me as Heisenberg, who is in the empire business.

Heisenberg1

Heisenberg2

Pulling the Cancer Card

Last night, I had a dream in which two women were making fun of my haircut and I said, “Hey, I have cancer!” Predictably, only one looked shamed, and the other seemed nonplussed. You’d think my own subconscious would be nicer to me.

But then, in my dream, I headed to a Mexican restaurant for margaritas and appetizers, so perhaps it was a form of apology from my REM sleep cycle. Sorry this lady conjured up was so inconsiderate; have some fried food that doesn’t count because you’re not actually eating it.

Sometimes, though, I do want to go around saying, “Hey, I have cancer! Be nice to me!” Yes, I would like to pull the cancer card to bully and shame people into being nice to me.

But then again, isn’t everybody going through something? Who am I to demand special consideration? Should I be allowed to lash out because things aren’t going the way I planned?

A few months ago, someone shared an article on Facebook titled “Let’s be gentle with each other. Let’s read each other’s signs.” The post was written by a woman whose husband suffered a traumatic brain injury that took six years to recover from, and during that time, she wanted to walk around with a sign telling people to be gentle with her because of what she was going through. She posited that we would treat one another differently if we all wore signs about what we were going through. (Hopefully.)

I do hate pulling the cancer card, so I try not to. Unless it’s because I want a seat on public transit. It’s often because I want to have a temper tantrum. Don’t we all have those days when we want to vent about life’s unfairness to then hypocritically demand special treatment? Maybe it’s just me.

On days like today, I do sink to lows, and something today made me want to throw a fit and let everything out in a flood of tears and angry words. (The type of angry words, by the way, that I think are stuck below my trachea and causing the abnormal PET scans.) So that’s why I’m writing it down here.

Today, someone told me that I wouldn’t be able to get the questions I needed answered for a story because the person was too busy. I was upset because it’s a day after my deadline and I sent the questions more than a week ago. Mostly, however, I was upset because I had cancelled by first post-chemo date with an oyster happy hour to finish this story tonight. Woe to the person who is responsible for coming between me and an icy platter of delicious $1 bivalves after months of separation.

This stuff happens all the time, so my personal reaction to this isn’t warranted. It’s unreasonable to think that this person thinks my time is less valuable. Yet I wanted to announce, “I rushed home after hearing that I might still have cancer and might have to spend three weeks in the hospital to interview the director of this program when I wanted to go home and cry.” I suppose that might have been a good thing, in retrospect, to have something constructive to do instead of wallow in self-pity and fear.  I also wanted to say, “I spent hours working on this, already, and I just need five minutes from you.” But what I really wanted to say was, “I haven’t eaten oysters in months, and tonight was the only chance I had to eat them for $1 each this week, and I might need to have more chemo so my time to enjoy them is limited, and I am holding you personally responsible for this, though it is not your fault.”

But honestly, I don’t know what the person who can’t answer my questions is going through. I do know she’s extremely busy. And, after all, I’m the one with the cancer and the chemo restrictions and the hankering for oysters and the bad mood. While I haven’t actively thought about the disappointing PET scan results and the need for another biopsy, I’m extremely sensitive to the smallest disappointments.

I tried to cling to the positive after the news on Friday. It might not be cancer; it could just be inflammation. Also, I met with the doctor yesterday, and I found out the surgery isn’t very invasive at all and I don’t have to spend the night at the hospital. And it’s after Halloween, so my plans to be Heisenberg will not be foiled.

The surgery takes only an hour, so the chances of a full zombie outbreak while I’m out are very slim. My boyfriend told his dad about my fears, and his dad pragmatically responded, “That probably won’t happen.” For his recent birthday, my boyfriend’s dad got some sort of chainsaw on a stick, though, so that’s easy for him to say, since he has the perfect zombie-killing tool.

Also, I can get back to working out again, and hopefully I can lose the 10 or so pounds I’ve gained while being somewhat sedentary. But the surgery and the possibility of remaining cancer—not to mention some pretty intense-sounding treatments—have me a little down. The thought of heading out for $1 oysters like things were almost normal again made me smile, and so that’s why I was so disappointed today. It’s what they symbolized. I want to slip into a pool of self-pity and think, “Well, it’s not like I have good scan results to celebrate anyway, so I may as well spend the evening writing this.”

Although what’s more normal than having to cancel plans because someone didn’t meet a deadline? I guess that’s not the kind of normalcy I was seeking, but there it is.

I suppose if I had a sign right now, it could be summed up, “I’m sad and feeling sorry for myself and prone to irrational feelings. Please send oysters.”