A Pain in the Neck: Coming Full Circle

It started just below my clavicle on the left side. It was December 14, 2012, and I noticed a strange bump. After being dismissed by my primary care doctor and going to a sports medicine doctor, who became increasingly alarmed as the bump grew over several months and I developed a rash, the sports medicine doc sent me to a specialist who discovered I had Hodgkin’s lymphoma. Bulky tumors spread through my chest and I could barely move my left arm by April. Six months of ABVD chemotherapy didn’t work, so I did two rounds of in-hospital chemo and 10 days of radiation, followed by a monthlong stay at Memorial Sloan-Kettering for an auto stem cell transplant.

Nearly seven years later, I’m probably at the end of my fight with cancer, this time a different type: neuroendocrine tumors. I’ve had a Whipple procedure that removed part of my pancreas, some of my intestines, part of my stomach, my entire gall bladder, and some lymph nodes. I’ve had a liver ablation and several embolizations. I’ve had four rounds of Peptide Receptor Radionuclide Therapy (PRRT), though the last one wasn’t magic like the first three were.

It seems impossible to accept that there’s not much more to do, until I list all of the treatments and surgeries and procedures. When I looked back the other day at all the treatments that the hospital has come up with to extend my life and improve my quality of life, I’ve been taken apart and put back together and been made radioactive and had systems broken down and rebuilt. At some point, all the king’s horses and all the king’s men and even modern medicine won’t be able to put me together again. Even with this list, it’s hard not to feel defeated.

I wanted more time. I still want more time, but only if it’s quality time.

Last Wednesday, I tried an immunotherapy drug called Keytruda that has a 3 percent chance of working for my rare type of cancer. The odds aren’t good, but it’s my last option before hospice.

Am I losing, in the end? Eventually our bodies stop working. Mine has been trying to kill me for an impressive seven years. I probably shouldn’t even be here. I wouldn’t have been here maybe a century ago. The PRRT that bought me the last year wasn’t even FDA-approved until right before I became the first patient at Memorial Sloan-Kettering Cancer Center not in a clinical trial to receive Lutathera. I have the very best doctors at one of the world’s very best facilities, staffed by some of the very best people at the top of their fields. I’ve been extremely lucky in that sense. They’ve worked tirelessly not only to keep me going, but to help whenever they can regarding quality of life.

In seven years, I fell in love more with New York City. I lost three beloved cats and gained three more. I got a new job. I went to concerts, museums, performances. I traveled to Scotland, Spain, Cuba, Bermuda, California, Barbados, France, Ireland, Iceland, Sweden, Denmark, Tennessee, Vermont, New Hampshire, and so many other places. Milestones happened: birthdays, anniversaries, weddings. People I love made new people and I got to meet them.

There were also upheavals, heartbreaks, betrayals, lay-offs, deaths, illnesses, losses, and the usual hardships. But I can’t imagine missing any of the last seven years.

I mean, a Cleveland sports team even won a championship.

I met and gotten to know a lot of people in the past seven years too, and I can’t imagine having left without meeting them. I even dated, something I’d never thought I’d do (or have to do), and I fell in love. On Tinder.

So if this is the end, I didn’t lose. I feel like the doctors bought me time. I feel like I robbed a bank and have been on the lam and the authorities are closing in, and my time of getting away with it has come to an end. I’m full of sad resignation and defiance. (Actually, that sounds like the finale of one of my favorite TV shows.)

I’m waiting for the side effects of the Keytruda. I’m told they are minimal. I keep waiting. Do I feel different? I think I’m maybe getting a slight rash. I do feel a little different but I couldn’t tell you how exactly. For the most part, I pretty much feel the same. I get a little tired. It’s hard for me to climb stairs.

My lymph nodes hurt. They hurt increasingly over the summer, as the neuroendocrine tumors spread through my lymph system. I feel kind of sore, especially in my chest, near my clavicle. This time it’s on the right side. My neck feels sore.

And so now near the end, here I am, with a pain in the neck.

The irony isn’t lost on me.

 

The Return of the Kraken

Almost exactly two years ago, on Record Store Day, I had a liver ablation to get rid of what they thought could be my last neuroendocrine tumor. (It wasn’t.) My ex went out that day to a beer event and to a show, and he took my beloved Kraken Rum umbrella, complete with tentacle handle, that I got at a media event. Only one of them came back that night.

It wasn’t my umbrella.

I called the bar and music venue. Friends offered to look. The umbrella was gone. My ex said the umbrella was hard to hold anyway.

My friend gave me her Kraken umbrella as a replacement. Another friend sent me an octopus tentacle pen.

Then, a few weeks ago, a friend who sometimes works at the music/event venue texted me a photo and asked, “Hey, is this your umbrella?”

There it was, in coat check.

It was as if it sensed it was time to return to me.

These past couple of years have been rough. I was told I would always have cancer. I had a traumatic 40th birthday. I almost died and for five months, until the new PRRT treatment, I watched myself deteriorate with no relief in sight. A 12-year-relationship ended. Something I had hung hopes on for six years evaporated in the course of 48 hours, and it hurt so much that the weight would pin me into bed some mornings.

Yet, I’m happy. It seems like every time something knocks me down—hard—I have to pick myself up, dust myself off and keep going, even if I am wounded or limping. (Sometimes, as was the case this week, literally.) “I don’t have time to be sad,” I explained to my friend who let me stay with her after my breakup and first PRRT treatment, when I was radioactive. I just don’t have much time. Months. Maybe years. I feel sick today and whenever I feel sick, I’m worried it’s forever.

A lot of things have been outside my control, from disease to other people’s behavior. I was telling someone last week that bad things seem to have happened to me, while I’ve had to actively make the good things happen.

A few weeks ago, I went to a talk about neuroendocrine tumors. When it came to the part about ki markers, I just remember that mine aren’t good. After PRRT, the average is 40 months of wellness. I was given six. My rare VIPoma tumors produce hormones that have terrible effects. I’m younger than most people who have this cancer. Most people think I am a caregiver, a daughter, not the patient. When they realize I am the patient, something in their faces shifts.

Sometimes it all catches up to me, and I cry out of exhaustion. Last week, I was the lady with the black eye crying on the train, my favorite place to cry. (As I have mentioned before, I don’t feel alone but I also don’t feel so vulnerable or like I have to explain anything.)

Oh, I gave myself a black eye last week. The black eye is a symbol of something. I’m still not sure what. I had gotten my chipped front teeth fixed and was ready to take on the world. Then my sick cat had to go to the vet, and as I ran to catch him to put him in his carrier, I tripped on cat-urine-soaked bedding and fell face-first into a trunk. The top of my eye socket hit the trunk lid so hard, I saw stars. It was like a cartoon: as I lay on the floor bleeding, the animated stars circling my head, the cat sauntered away.

I arrived at the emergency vet, bruised and bloody. “Is he hard to handle?” asked the vet tech, visibly worried, as her eyes moved from my swelling purple eye to the big tabby cat in his carrier.

My sweet cat Ziggy has been leaking since he had a bladder obstruction. On Friday, the vet said that maybe his bladder had stretched out and might not go back, and if that were the case, I’d have to put him down. He’s only three. He’s so smart and sweet that when I give him pills and they fall out of his mouth, he’ll try to dutifully eat the pill from the floor. He’s an exceptional cat, and I love him so much. Are you kidding me? I mentally railed. You can’t leave me this one thing?

Luckily, it seems as if the medication is working. I woke up last night to thunder and to three cats that had set themselves up diagonally across the bed. Ziggy, who was (and always is) snuggled closest to me, is drier and less groggy.

Saturday marked two years since my umbrella loss, but it was also another anniversary, according to Facebook: Five years earlier, I’d gone into the hospital for a monthlong stay for my stem cell transplant to treat my refractory Hodgkin’s lymphoma. That also brought up some complicated feelings: the hope I’d had then, when I didn’t know I had a second type of cancer.

The past several years in particular seem like they’ve been full of high highs and low lows, with very little in between. Not everything lasts. Often I’m preoccupied with good not lasting or wondering when good things will be taken away. It’s a particular type of suffering, I learned at a dharma talk this summer. But the bad doesn’t always last forever either. I’ve been trying to become comfortable with the fleeting nature of happiness. I’ve been trying to learn to be happy with what I have instead of what I want or what I think will make me happy.

While worried about Ziggy on Saturday, I went to yoga. It wasn’t the class I’d planned to go to, but I’d mixed up the times. Often when that happens, it ends up being fortuitous. After class, the teacher read an excerpt from Kahlil Gibran’s The Prophet, about the balance between joy and sorrow.

“When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.
When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.
Some of you say, ‘Joy is greater than sorrow,’ and others say, ‘Nay, sorrow is the greater.’
But I say unto you, they are inseparable.
Together they come, and when one sits alone with you at your board, remember that the other is asleep upon your bed.”

It was exactly what I needed to hear.

Sometimes, when I realize I’m feeling OK, I’m so joyful. It’s nice when I’m well and not sick. (Conversely, when I am sick, I freak out it’s forever.)

I don’t know what to do with the rest of my short life. Who does? I live life intensely, but I always have. Sometimes I feel like I have to justify what I do, but I know that’s not specific to me. A friend pointed out that some people might always question my choices. Why am I still working? Why am I traveling? Why do I work out? (The last one is easy—if your time on earth might be limited and you want to stretch it out, 30 seconds of squat-jumps, burpees, or mountain-climbers seem like an eternity.) I don’t know what to do except march forward.

I’m afraid. I’m afraid I’ll get sick again soon.

But tonight, Ziggy was purring and playing a game on the iPad. He sits curled up with me as I type. Right now, we have this moment and are happy.

Panic

Yesterday I found myself back in the chemo chair in a familiar treatment room at Memorial Sloan-Kettering Cancer Center to receive a dose of Reclast to treat my osteopenia, decreased boned density that’s a long-term side effect of my Hodgkin’s lymphoma treatment and radiation. (It was one of the fun facts I learned right around the time I found out about the neuroendocrine tumor so this was put off until after my Whipple procedure.)

Shortly after the nurse hooked up the IV with saline, I felt a little dizzy. Suddenly, I couldn’t breathe. My head felt like it was filling of fluid and about to burst, and I had to move it from side to side. I felt like I lost control of my body. I was sweating and nauseated. My eyes couldn’t focus and everything was blurry, like my eyeballs were in a cocktail shaker.

A panic attack. My first in nearly 10 years. It was even worse than I remembered.

For those who haven’t had a panic attack, it feels like you’re dying and losing your mind at the same time. As I’ve said before, panic attacks are really misunderstood. Some people say things like “I was totally having a panic attack,” but unless you feel like your body and mind are rebelling against you at the same time and you have no control, then it’s probably not a panic attack. It irritates me when people say they were having a panic attack when they were just freaking out the same way it bugs me when people often used to say they were “literally dying.”

Well-meaning people who try to understand will try to soothe you and remind you that there’s nothing to worry about and to be calm. That is nice of them, and it’s true, but it doesn’t help much in the moment. Panic attacks aren’t really necessarily induced by an obvious stressor or worry, even—it’s the body going into fight or flight mode for seemingly no reason at all. One moment, you’re sitting around waiting to get your tire changed and then next moment you feel like your body is shutting down and your brain is trying to flee your skull. When I had my first panic attack more than 15 years ago, I developed panic disorder, meaning that I was so afraid of losing control and having a panic attack that my phobia kept inducing them. It’s essentially a fear of fear, and it becomes a self-fulfilling prophesy, a cycle of panic. After a few years of therapy, medication and research, I finally left panic attacks behind, until yesterday.

I knew what was happening almost immediately. “I’m sorry, but I think I’m having a panic attack,” I told the nurse as I started to gasp for air and roll my head from side to side. “I feel like I’m going to pass out.” She asked if I needed crackers, but then the nausea set in. “I feel like I’m going to throw up.” I remember her putting a pillow behind me and asking if I could move forward, but at that point, I felt like I had no control over my body, and I couldn’t move. After asking what she could do, I think I told the nurse I just had to wait it out. I can’t quite remember. I know she told me that we would wait and that I should call her with my button when I was feeling better.

I know I cried. I felt helpless and I was annoyed with my body for betraying me yet again.

Logically, I knew I would be fine. There are worse places to have a panic attack than a room with your own nurse. I didn’t pass out, but in a weird dissociative state, I don’t remember things. I have no idea how long it lasted—somewhere between 10 to 15 minutes and an eternity. When I started to get my bearings back, I realized I had a plastic bedpan in my lap in case I threw up and I had been wrapped in a blanket at some point.

Even though I knew I would be OK, getting through it was completely miserable experience I could go another decade without—the feeling of losing control of my body, feeling like my head was filling with sloshy liquids, the inability to focus my eyes. A panic attack isn’t all in your head, the way some people think it is. It’s a physical reaction that is out of place. Kind of like an allergic reaction. Your body thinks it’s helping you, but it’s actually creating a problem.

I was nauseated so my body could rid itself of food and flee quickly. The vision changes, the increase in heart rate, the constriction of muscles were all to prepare me to escape danger. It’s something that might be helpful if I were running from a mountain lion, but not necessarily of any use to me when I am hooked up to an IV.

Afterwards, I was drenched with sweat and had a headache. My eyes ached from feeling like they’d been removed from their sockets, inserted into a snow globe and shaken up. When I stood up later, I was unsteady and my legs were wobbly.

Though part of what makes panic attacks so maddening is their random and unwelcome surprise appearances, this one does kind of make sense. I was in a place where I felt safe, but those chemo infusion rooms hold a lot of memories. They are where I started treatment years ago for what I assumed would just be six months. Until I arrived yesterday, I had thought the Reclast would be a shot, and I didn’t expect to be hooked up to an IV. I could see why being there, hooked up to an IV again, my body decided it wanted to flee. After all, the last time I was in that situation, I was essentially being poisoned, even it was for my own survival.

I’ve also said that when you have cancer, people understand what’s wrong to a degree, and offer you sympathy, but when you have a panic attack, people often just tell you to calm down and you feel like a crazy weirdo. Both are instances of a strange body betrayal—a disconnect between your physical being and your will. Both can make you feel helpless, in different ways.

This time, I had the luxury of having only a nonjudgmental nurse as a witness, and I was already at a medical center, a comfort when you feel like you are dying. I hope my days of panic disorder are completely behind me.

I grabbed my bedpan to take with me on the train, figuring that I could put it in my lap if I felt queasy again. Also, maybe people would give me a little bit of elbow room if I had a bedpan, but it’s hard to phase people here.

After several years of my squeamish self enduring tubes, IVs, needles, catheters, surgeries, transfusions, transplants, and all sorts of procedures without panic, I was finally undone by an IV full of something to help me uptake calcium for bone health. At least it seems my body has a sense of humor.

Phew!

I was so prepared for bad news about my scan, I didn’t even know how to react when I heard it was clear. It took at least a minute to register. In fact, it’s still sinking in.

Not since the summer of 1994 have I been this pleasantly surprised and flabbergasted by good test results. One day, I answered the phone and it was Mrs. Bergen, my history teacher who called to say that I scored a four (out of four) on the A.P. U.S. History exam. “Four?” I repeated suspiciously. “Are you talking to the right person? This is Josie.” She laughed, and said, “Yes, I know.”

My doctor was happy to deliver the good news. In fact, she thought I’d already known the results so the big reveal was a little anti-climactic. I hadn’t thought to ask the nurse, who came in first to ask me some questions. I’m not sure why. I wasn’t thinking clearly and I didn’t know if she was allowed to tell me. She seemed cheerful, but she’s always a lot of fun to talk to. When she talked to me about getting re-vaccinated the next time I come in, I thought the news might be good, but still, I didn’t ask. (Since I have a new immune system, I have to get all my vaccines again.) After she left the room, my boyfriend mentioned that she wouldn’t be talking about vaccines if my scan hadn’t been clear. I was so terrified to allow myself false hope, I still didn’t ask.

When the doctor came in, she said something about the clear scan, because she thought I’d already known the results. I could have looked online, but I didn’t want to misinterpret the results, especially because I have that troublesome weird spot.

As for the mystery blob that shows up on the scans, it’s gotten smaller. So it’s not cancer, but it’s still not clear what it is. My boyfriend thinks it’s bottled up anger that’s dissipating. He compared it to the part in How the Grinch Stole Christmas, when the Grinch’s (spoiler alert) heart grows three sizes, but instead, the ball of anger that resides in my pancreas is shrinking. I have noticeably less ire.

I do have some radiation-related inflammation in my lungs, but the doctor says it’s even less than she would have expected. As she flipped through the scans on the computer to show me the results, I was still in a state of shock.

I also learned that I might be the only person who wears my MedAlert bracelet that I was told to order when I left the hospital. If I ever need a transfusion, it’s to make sure I get irradiated blood. I asked my doctor how long I have to wear the bracelet, and she said that no one had ever asked her that or mentioned the MedAlert gear. My boyfriend, who loves to interject information while I’m at the doctor’s office, piped up that I’m a goodie-goodie. This is true. It didn’t even occur to me not to do as I was told. I was given a MedAlert order form that was already partially filled out when I was discharged after my transplant and I thought it was mandatory. Also, my friend who analyzes blood gave me a really good explanation of why I need irradiated blood.

The answer to my question about wearing the bracelet is, as it turns out, for the rest of my life, unless I get a wallet card or something. The rest of my life is now a big, exciting thing instead of a question mark. Sure, I know that the cancer can come back. I’ll always have that little question mark in the back of my head. (Or, I suppose, in my pancreas.) But I’ve been given the gift of another six months, at least—possibly a lifetime—of not having cancer. I’m really on the other side of this thing. When I think about it, I sometimes get lightheaded. My life has been on pause, and I can resume it.

When I look back at the past few years, what upset me wasn’t the actual treatment. The chemo, the IVs, the hospital stays, the phebitis—these were tough. But the worst part was having to put my life on hold.

We can’t plan, really, for the future. I don’t know what it holds for me. In fact, after my scan results, I was certain I would be struck by a bus or hit on the head by a falling anvil (the kind that reside in the sky to unfairly take people out who have just received good news). My cynicism has returned. But I can actually move forward right now. I can think in the long term, like everyone else. Yesterday, I thought of vacations. I can go to the beach with my boyfriend’s family. I can plan to go to Europe and meet my best friend’s baby, who was born while I was going through chemo and is now a toddler. It’s as if my life has been in the hands of cancer and I’m finally being given back the controls. It’s wildly exhilarating.

I could steal a police car and drive down to D.C. for a friend’s birthday party, but I think the police work stoppage is over. And I am a goodie-goodie. And I hate driving. So there you have it. The craziest thing I did yesterday was at The Vaselines show we went to in the evening. One of the band members, Frances, was at the merch table and I bought a T-shirt and wore it right then. At the show! That’s a big concert faux-pas. You can’t wear the shirt of the band you’re seeing at the show. But after I bought the shirt, I said, “I’m going to wear it.” And Frances said, “You should!” So I did. That’s about as crazy as I get these days.

I didn’t complete my bucket list yesterday. The free pizza place was too crowded, and after the doctor’s appointment, we were too hungry to make the detour to Roosevelt Island. We went to lunch in our neighborhood and ordered an antipasti plate. The man dining next to us happened to be looking at me, of course, as a piece of prosciutto fell from my fork. I felt his eyes upon me as I looked down at my lap puzzled and didn’t see my renegade ham. I then saw his gaze fall to the floor, where the proscuitto lay. I picked it up and put it to the side on my plate, vaguely embarrassed.

I thought that maybe after cancer, I would be different somehow. Braver. Maybe not as shy. But I’m still essentially the same. When I was back in Cleveland for the holidays, I went to the old Metroparks area where I had spent so much time as a teenager with my friends. I hadn’t realized how lucky I’d been growing up a few minutes away from such a beautiful spot. I hadn’t been much in the winter, and it was particularly lovely with a dusting of snow. Being there with my boyfriend was meaningful—I hadn’t realized I’d never visited the park with him. A friend’s memorial bench sits in the park. I’d always felt guilty somehow for losing touch with him before he died. You always think there will be more time. But as I had time to reflect on mortality this past year, I wouldn’t resent people I lost touch with. In the end, I would value them as much as part of my life, even if it were in the past. People had time to reach out to me, since my situation was years long. I put my guilt to rest that day and smiled at the inscription that’s serious but funny at the same time, as I remember he was. It says he “came here…a lot.”

A lot of things clicked into place during that cold walk, being in a spot where I’d spent so much time as a teen, dreaming how my life would be. I had meant to write it down in a blog, but time got away from me. That’s one thing that I’ve promised my boyfriend I would do if I got a good scan—work less and do fewer 12-hour days and make time for fun.

I’m sure this experience has changed me in some way, but I’m still figuring out how. I still do things like drop ham into my lap at nice restaurants.

After lunch, I celebrated with a nap that spanned the entire afternoon to make up for the previous week’s restless nights. I feel as if I’d been holding my breath for the past few weeks and that I can finally breathe.

It’s easy to get wrapped up in oneself in general, but especially when you’re dealing with cancer. While feeling especially supported by those around you, you’re also really alone. I tried to wrap up all my anxiety within myself, but when I made my announcement that my scan was clear and got responses, I didn’t realize how many people were holding their breath with me. It’s as if Friday’s gusts of wind that swept down the streets of Manhattan on my way to the train after receiving the good news was just the collective sigh of everyone I knew.

Before I left the doctor’s office, I called my mom. Her palpable happiness has one of the best things I’ve ever heard. My boyfriend’s mom, my friend’s mom—does anyone feel things as deeply as mothers do?—sent happy missives, cried, did joyful dances. My boyfriend gave me a big, relieved hug after the news. Friends sent me messages. I had somehow forgotten how much my own story affects others, after two years of people telling me how much they cared about me.

That’s the good thing that came out of all of this. As I’ve said before, I’m not one of those people who thinks things happen for a reason. But I do think you can learn from what happens. During my post-cancer depression, I really hit some lows. Everyone was so happy for me, yet I couldn’t join them. Now I can. I’m finally ready to start celebrating—and living—again, on my own terms.

Goodbye cancer. Finally. Maybe we will meet again. I hope not.

Scanxiety

The other day, as we ate dinner, my boyfriend finally asked me, “What are you doing?”

I was sitting at our dining room table with my hands under my armpits, Molly-Shannon-as-Mary-Katherine-Gallagher-style. “I’m feeling my lymph nodes,” I replied. It was then requested that I refrain from doing so at the dinner table.

Truthfully, I don’t know what my lymph nodes are supposed to feel like, but I’ve been checking in on them a lot lately. I feel under my ears and press on my upper chest, where the troublesome bump showed up two years ago. Tomorrow I get the results from my second post auto-transplant scan.

In December, I felt little pangs and twinges that went away. They’ve been back lately—a pang here and a twinge there—but they’ve been especially bad this past week.

On the bright side, sometimes scan anxiety or “scanxiety” brings on phantom pains. I have had so many pains leading up to the big cancer-or-not reveal, when I am optimistic, I think that they have to be brought on by my imagination. I may have cancer of the tricep and the ankle, if I am to believe the pains.

That’s when I’m being optimistic, which isn’t all that often. I’m more terrified now than I’ve ever been. If there was a bright spot to having refractory Hodgkin’s lymphoma, instead of relapsed, it’s that I never received the news that the cancer went away. It was present for every single scan, stubbornly refusing to leave. I never had a celebration or the chance to breathe a sigh of relief. For a year and a half, it was always cancer, still cancer, still cancer and finally a big question mark.

The question mark is how things ended in July, after my last scan. There was still a spot near my pancreas that continued to light up after chemo, radiation and the stem cell transplant. The doctor didn’t think it was still cancer, and he told me not to worry about it. And I haven’t, for the most part. Until now.

I haven’t really celebrated remission, because I’ve been uncertain if I have anything to celebrate, and I had a lot of recovering to do after the transplant. Once I recovered, I felt weird and depressed for months. Now I’m pretty much back to normal—or as normal as I get—and now I’m certain that this must mean the cancer will return to pull the rug out from under me again. (That’s probably a good sign at least for my mental state. It seems my outlook on life has once again returned to that of a wary cynic.)

I want more time being well. Now that I’ve had a taste of it, I don’t want to go back. When I went in last week for my PET scan, returning to the hospital and having the IV put in again reminded me of that year-and-a-half. It was just eight months ago when I lived at the hospital, full-time, and I’d nearly forgotten it. The scans, the IVs, the tests—everything seems blurry and dream-like now. (Well, some of it was blurred by morphine.)

I don’t want to go back.

During that time, I felt as if I had to shut off a part of myself to deal with it. Now, I feel as if I’m finally coming back to life. Still, I feel like I can’t plan. Someone asked me today if I had a vacation planned in the spring. Not until I get my scan results.

Everything is on hold until tomorrow, yet I also don’t want to know what tomorrow brings. I would rather stay suspended here in ignorance, even as I torment myself. Is this my last meal before knowing I have cancer again? Is this the last evening I have before knowing I have cancer again? 

I’ve been making deals with myself, the kinds of weird superstitions you count on when you have no control over what’s going to happen. If I stay in this yoga pose the whole time, I won’t have cancer. If I make it to the corner before the light changes, I won’t have cancer. My head is a weird place right now.

The very best news I expect tomorrow is that only the weird spot has grown and they’ll want to take a look. Whatever has been going on, the random pains in the spot area seem to be real. And then what? What if it’s something worse? What if, what if, what if.

Regardless of the news, I decided to do something fun to take my mind off any bad news if there is any. I wouldn’t say I have a bucket list so much as a few things I’ve been meaning to do. One of them is to take the tram to Roosevelt Island, and the other is to go to a restaurant in my neighborhood that offers a free mini-pizza with a beer. (Free pizza! My ambitions are low, but delicious and affordable.) No matter what, by this time tomorrow, I will at least have accomplished my life’s more attainable goals. Not having cancer is the main one, but that is not within my control.

Good news?!

Yes, there’s still that pesky question mark in the shape of the spot that’s still lighting up on my PET scan. But the doctor yesterday said that it’s “all good news.” Everything else is gone and the blood clot in my lung has also dissipated.

As for the spot, the doctor doesn’t seem to think it’s Hodgkin’s lymphoma. It could be a benign tumor. If it doesn’t grow, then they’re not going to worry about it. For the next three to six months until my next scan, it’s back to normal.

Why am I not dancing in the streets? Well, if you’ve ever seen me dance, you’d consider it good judgment. (I seriously considered signing up for a recent Elaine Benes dance contest at a Brooklyn Cyclones game.)

Also, my joints are still a little achey, something that the doctors say should be getting better soon. Apparently, it’s pretty common to have joint pain after a stem cell transplant because of the rapid muscle loss. I’m supposed to continue building strength, so my run up the steps featured in the famous Rocky scenes while in Philadelphia this weekend should prove to be therapeutic.

I should be using more exclamation points. I’m among those who overuse exclamation points to sound enthusiastic or friendly.

I feel oddly deflated. I have been buoying myself up in the face of disappointing news through all of this, and now that I may no longer need to do so, I find myself inexplicably sinking.

I’m fairly certain I have a finite amount of optimism. My boyfriend says I’m a pessimist, but I just like to prepare myself. Just last week, I pointed out that when I came across a bottle of urine under the footbridge near our apartment, I described it as half-full. If that’s not optimism, I don’t know what is.

I’m having a hard time accepting these next six months as a gift where I don’t have to worry. I feel as if I should keep my guard up. I’m afraid to get too comfortable with a (possibly) cancer-free life, only to have it possibly taken away again. I realize that’s silly.

Yesterday I did a quick five minutes of internet research and found that depression after a stem cell transplant isn’t uncommon, even if the results are good. It’s not as if I’m incapable of happiness, but I just feel a little adrift.

Since I started this journey back in February 2013, I lost my full-time job and have been freelancing, which is always laced with uncertainty. For some reason, taking on new projects after the transplant has filled me with crippling self-doubt. Assignments that I would have been able to breeze through have taken longer. I feel constantly overwhelmed and stressed out no matter how much (or little) I have to do.

The thing about depression is that it sometimes creeps up on you just when you think you should feel happy. Then you wonder what’s wrong with you and you feel worse. People try to cheer you up, and you feel even worse for bringing worry to those you care about.

So please don’t worry. I’m OK. I think. Just like the doctors are keeping an eye on the PET scan spot, I’m going to make sure this is just a passing case of the blues and not something that gets bigger and more troublesome. I have plenty of things to look forward to in the coming months—a trip to see family, friends in town, Sharknado 2.

It’s time to get my bearings and figure out where to go from here. Soon my exclamation points will return.

Time and Aging

I don’t really notice the passing of time much. I somehow lost the month I was in the hospital, so I keep thinking that it’s May, not June. Summer caught me by surprise.

The recent flurry of graduation photos posted by friends on social media also caught me off-guard. My friends’ kids posed for kindergarten, middle school and even high school graduation pictures.

Then someone asked about my 20-year high school reunion next year. Didn’t I just attend the 10-year reunion? Didn’t I just graduate?

Everything feels like it happened not that long ago.

Part of this is because I have a good memory, or so I’m told. It’s not that I’m particularly good about recalling useful information like trivia answers, deadlines or where I put my phone. It only seems as if I have a good memory, because I can recall events, stories and random bits of information from years ago—a conversation I had with someone in third grade about my Shamu eraser or the night an intoxicated man pulled his classic car into the parking lot where some high school friends and I were hanging out and tried to convince us to drive him home.

It’s sometimes a bit lonely when you’re the only one who remembers something, especially when you’re speaking to someone who is part of your old story. “Really? I don’t remember that,” the other person will say, slightly suspicious.

I try not to respond with the details that I remember, because it makes me sound creepy. But I sometimes find myself saying things like, “Yes, you were wearing your blue Converse for the first time and eating Twizzlers. It was the day before our biology final. Are you sure you don’t remember this?”

I’ve never had a firm grasp of time. Anyone who’s ever waited for me could tell you that. My boyfriend says I have no concept of time—usually while he’s exasperated, standing by our apartment door, waiting for me.

My poor mother used to arrive to places early before my own arrival—an entire month before I was due. She says my birth was the first and last time I was ever early for anything.

Now that I’m older, I am more punctual, but I tend to arrive right on time, never early. I hate waiting. And yes, I feel terrible about making people wait for me, but that’s mostly in the past.

Lately, I’ve been more acutely aware of time, because the past year and a half has been mostly full of waiting. I waited six months for the ABVD chemo to be over, three months for the clinical trial to finish, and a month or so for two rounds of ICE chemotherapy to pass and the weeks it took to complete the stem cell collection. The month in the hospital went by fairly quickly, save for the final week, but sometimes I would look at the clock in my room and watch the seconds pass.

Now, I’m waiting until mid August for my immune system to recover from the stem cell transplant enough to resume some sort of normal. Of course, I also wait for the scan, which could mean more cancer and waiting. After I recover from the transplant, if I get clear scans, I’d like to stretch the time out in between them while I enjoy myself because I’m terrified the cancer will come back, especially since it’s been so reluctant to leave.

For the first time since I was a kid, I’ve wanted time to pass quickly. The good news for me is that when you’re a child, a year seems like an eternity, whereas time seems to accelerate the older you get. My boyfriend says that time seems to speed up because the years become smaller percentages of your life. When you’re 5, a year is one-fifth of your life, but by the time you’re in your mid-30s, a year goes by pretty fast.

My tenuous grasp on time seemed to have loosened even more now that it’s sped up. This makes some people feel old, but I don’t really ever feel old. I’m just amazed that so much time has passed—without feeling as if I’ve aged very much.

I suspect I might just be immature. When there’s a serious situation, I still feel like I need to find an adult, before I remember that I am one. (That doesn’t stop me from looking for another, more responsible adult to handle the situation.)

Aside from the assumption that I might be mature enough to handle important things, I don’t mind getting older, really. I’m still years away from the aches and pains of old age. The only other main downside is that I’m wise enough to be embarrassed of my younger self. I probably can cringe at the person I was yesterday. I know the wisdom that comes with age is hard-won, but I could do without the flash of wince-worthy moments from my past—like worrying I was old at 23 or 25.

I graduated from college just shy of my 21st birthday, so as an employed college graduate, I felt old before my time hanging out with my friends who were still in college or on campus. (I wasn’t a huge fan of the whole collegiate thing anyway, so I was happy to be out of school as fast as I could.)

In my 20s, I worried about getting old. I checked for wrinkles. I actually haven’t worried about getting old since I turned 28. Turning 28 really bothered me. While other people balk at milestone birthdays like 30 or 40 or 50, turning 28 made me inexplicably sad. I saw it as some turning point—I was no longer a kid. I’d have to get it together. At that point in my life, I had a career and a house, but I mourned the loss of my youth. I thought I should feel more mature.

A lot of rock stars die at 27. It seems to be a cut-off point for either being forever young (and, unfortunately, dead) or going on with the rest of your life and growing up.

Since my 28th birthday, I’ve never felt old. I’m glad I experienced the Smurfs, telephones with cords, black-and-orange-screen computers before the internet, the ’90s (giant coffee cups, grunge, etc.). I still miss VCRs and I sometimes try to rewind DVDs like they’re VHS tapes. When I see those lists about what “kids these days” won’t know, I don’t feel old; I’m just happy to experience the time that I did.

I also live in a blissful lack of self-awareness when it comes to knowing what’s cool. When I stop doing something, I assume it’s not cool anymore. For example, I assume people don’t go to clubs anymore, because I don’t.

I’m also surprised when other people see me as older. A few years ago, I took a bus back to Ohio, and during a rest stop break, a man came up to me while I was in line and said, “Young lady, you dropped your smile.” I’d forgotten how friendly Midwesterners can be.

Smiling, I got back on the bus, and a college student asked to use my phone. She called her mom. I overheard her say that she borrowed a phone from “a nice lady.”

Lady? It took on a different meaning than it had only minutes earlier. I nearly interrupted her and said, “I think you mean young lady.”

Since I got all the feeling old part of my life over in my 20s, with no other approaching birthdays bother me, it’s been smooth sailing. I love celebrating my birthday. In a way, I see it as a celebration of youth. After all, I’ll never be any younger than I am on that day. The numbers are just going to keep going up.

My upcoming birthdays are going to be even better, as I hope to celebrate many more to come. National Cancer Survivors Day was last week. I still don’t consider myself a cancer survivor, since I’m not sure if the stem cell transplant got me into remission. I read recently that by 2024, there will be almost 19 million cancer survivors. I hope to be among them. I look forward to the opportunity to get old, and maybe even becoming a nice old lady.

Freak

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Home Again

So I’m home! I checked in to Memorial Sloan-Kettering Cancer Center on April 13, and I checked out on May 12 around 2 pm. After a month of radiation, chemo and the auto stem cell transplant, I hope to be cancer-free when my next PET scan rolls around in August.

I can’t express enough gratitude to my family and friends for all the support the past month. Thank you for the gifts, cards and the words of support. They truly sustained me during my time in the hospital, whether it was a gossip magazine to read while I was climbing the walls or Easter candy when I could still eat or an email telling me to hang in there.

I’d also like to thank the staff of MSKCC for taking good care of me and being unfailingly nice and understanding during an extremely difficult time. This includes the doctors, nurses, food staff and cleaning crew, who all made me feel as if I was in good hands and listened to. I do miss my afternoon tea service and bedside yoga. I never want to go back, for obvious reasons, but it’s as good a hospital experience as you can hope for. Also thank you to the nurses who had to re-introduce themselves to me after taking care of me during my post-transplant morphine haze. Even if I can’t remember much, the care given to me during that time doesn’t go unappreciated.

Here’s a long update, broken down into subcategories. Now that I’m recovering, I don’t expect to abandon my blog, especially since I still haven’t returned to work.

Panic disorder scare and Ambien. By Monday, I’d regained my sanity, but had been having trouble sleeping my last few nights in the hospital.

In fact, I took Ambien for the first time three nights ago, as well as some Ativan to quell some panic feelings. As someone who used to have panic disorder, I felt the sleepytime panic jitters. I’ve been through a lot this past month. I keep forgetting that all the drugs, from the Ativan to the morphine, might have me feeling a little off. I was especially worried that my panic disorder would return, but thankfully, I was just afflicted that night.

A word to those who want to tell me to just calm down or not worry: Thanks for your well-meaning advice but that’s not what panic disorder is. Asking me to will my panic symptoms away is kind of like asking me to will my cancer away. If I would, I could, but panic disorder and panic attacks are physical conditions.

Sometimes, people say they’re having a panic attack, but they are just freaking out. A real panic attack feels like you’re dying and losing your mind at the same time. I wouldn’t wish it on my worst enemy. Not even my celebrity nemesis, Prince. (It’s a long story, but in my version, I emerge victorious over him, of course.)

Panic attacks are basically your body’s fight or flight response. The problem is that it happens with no obvious trigger. One moment, you’re waiting to get your tire changed, the next moment, your heart is racing, your extremities are numb, you’re sweating, and you feel like your brain is trying to leave your body in a weird, dissociative feeling. It’s a natural thing that happens at the wrong time.

The worst part of panic attacks, though, is that no one understands them and thinks you can somehow calm yourself out of them. People understand cancer, but when you have panic disorder, you often get a lot of side-eye. Or well-meaning, but misguided advice to just get over it.

Anyway, I always go out of my way to try to explain panic disorder—when you keep getting panic attacks over and over again—to people. Granted, some of it is mental. With panic disorder, you worry so much about having another attack, you create triggers for yourself and end up having attacks. People with panic disorder often become agoraphobic, because they’re afraid to go out and have panic attacks, or alcoholics, if they try to self-medicate.

I was dangerously close to the latter, before some cognitive behavioral therapy and medication. I finally got through my panic disorder, but it’s not something I want to revisit.

I’ve been avoiding taking Ativan, because of my old panic issues, although it helped during the stem cell transplant. It’s also offered to quell nausea, but I’d usually opt for the alternative. Also, knock on wood, I rarely have nausea. The weight loss I’ve experienced is from indigestion and general esophagus trauma from the radiation.

Yet three nights ago, I found myself taking Ativan and Ambien. The latter also makes me nervous. “What if I drive?” I asked the nurse who came in to administer the Ambien.

“Well, you’re in here, so you can’t do much,” she pointed out. I would have to disconnect myself from my medication pole somehow and then steal a car to drive out of the hospital. Still, I worried I’d go crazy and rip out my IV or just generally be a weirdo. Since the staff had seen me having morphine conversations with myself, though, there’s not much more I could to in the weird department.

People do some strange stuff on Ambien, though, from cooking meals to shopping. One of my favorite writers, Laurie Notaro, dreamed up a fart chart that she included in her latest book. I don’t have that kind of comedic genius in my subconscious. Ambien made me think about sleep, really think about it. Like I wondered where my servants would also sleep. (I suspect my subconscious Ambien self is a Gwyneth Paltrow type.)

What if I tried to start an uprising and liberate my fellow patients? That seems like something I’d try to do. The nurse added that it’s the lowest dose of Ambien they give out.

I finally, blissfully, fell asleep and to my knowledge, didn’t exhibit any weird behavior. I took it for the few following nights, but I think I was stir-crazy. By the last night, I reversed my bed so my head was at the bottom and my feet were at the top, and I slept about three hours. I was also Christmas-morning eager to go home, so that factored in.

I slept Ambien-free last night, in my own bed, with my squishy pillow. I hope to get back to normal sleeping once my throat heals.

I had my line pulled. What does this mean? No more leukapheresis catheter! I’m line-free. Not attached to anything. I don’t have tubes poking out of my chest.

What I did have, however, was a major case of the heebie-jeebies. If you’re squeamish, skip ahead. To take out your line, they just snip the stitches and yank it out. That doesn’t seem right, but there you go. Yesterday, I had breakfast and then a shower and went straight to IR to have my line removed. I was going to break my Ativan rule and ask for it, as long as it was being offered, and my squeamish self was going to have a tube yanked from my chest. But I didn’t have time. They assured me it would be quick.

Luckily, I didn’t have to stew in my own squeamishness long before the doctor arrived. He matter-of-factly informed me about the snipping and pulling. I refrained from asking him an inane question, like, Are you sure this is the best way? I did ask, however, “Will this be gross?” He said no and was mostly right.

Since my line had been in for almost two months, he was concerned it wouldn’t want to come out. This concerned me too. He snipped and tugged. It didn’t want to come out.

He then gave me some lidocaine shots (ouch, a little), and then did some snipping with scissors. Finally, it came out, and I am free. I am still squeamish about the whole thing, though. I won’t be entering the medical profession anytime soon.

Release. Hi again, fellow squeamish people. After my line was pulled, I had some instructions to listen to and some medications to go over. At 2 pm, I was released. Finally.

I can eat only ice cream. Well, mostly ice cream. There are worse fates, I suppose. To get released, I had to show I can eat 1,000 calories and drink at least 1.5 liters of water. It’s frustrating, because I usually can eat like a champ, and I drink water all day long.

The issue is my throat pain, still from the radiation. It’s difficult to swallow, and therefore, eat. I also still have somewhat painful burps, so eating hurts twice.

I’ve been having a lot of smoothies—specifically a hospital pediatric concoction called the Cranky Monkey (banana, coconut milk, yogurt and chocolate ice cream). It still takes me forever—well, hours, to drink one. Plain ice cream is the easiest thing to eat—nice and cold and melty. Mostly, I’m eating soft foods—mashed potatoes, milkshakes, yogurt, etc. Tonight, my boyfriend’s made me polenta. I am spoiled.

Yesterday, before I left the hospital, I couldn’t resist the lunch special, sesame chicken. I ordered a half-order and barely made a dent in it, but it was delicious. And it was nice to chew again. Once I can eat, I’ll be sure to pack on this lost weight. I’m hungry.

Also, as someone who didn’t and couldn’t eat, for several weeks, if you tell me you’re on a diet cleanse, I’m going to punch you square in the mouth and then you’ll see what not eating feels like. I’ve tried to be understanding about cleanses, even when I was a nutrition editor, but here are the facts: Your body doesn’t need a “break” from digesting. Right now, I’m recovering from my “break.” If you believe you are full of toxins, you are full of something, but not eating isn’t going to solve your problem. I’m not staying quiet about my cleanse feelings anymore. If you can eat something, then do.

“Probation.” Now that I want time to pass quickly, I have all the time in the world. I miss feeling like I don’t have enough hours in the day. I am eager to get back to work.

A fellow transplant patient whom I virtually “met” through the blog, said that while hospital was like jail, the next three to six months are like probation. I have to agree. The list of restrictions are long. Here are a few restrictions, as several of you have asked.

1. No crowds. I have to avoid crowds in a city of 8 million people. It can be done, but it’s tricky. This means no concerts, no movies at peak times, etc.

2. No germs. No sick people. I also can’t get vaccinated for MMR (measles, mumps, rubella) for a year.

3. No gardening. I just found this out yesterday. I am going to have my boyfriend do the garden dirty work this year, while I supervise. Looks like I’m planting mainly perennials this year. Actually, this might be the year I do the Orange Flower Experiment. Orange plants thrive in my garden, from nasturtiums to mums. I might just plant orange and green things this year and call it a season.

4. No fresh vegetables. I miss salads. But I have to be wary of germs, so I’m not allowed fresh vegetables or fruits, aside from thick-skinned oranges and bananas. And, of course, no sushi, oysters or anything that’s not thoroughly cooked. And no restaurants or take-out, at least for awhile. I’m lucky my boyfriend is a good cook.

5. No drinking. I can’t imagine ever wanting to drink again with the way my stomach is. But the time will come, just not at least for three months. That’s OK with me for now. Talk to me in two months. Some of my friends got me a cool bar map of NYC, so once I am back to my old form, I intend to use it wisely.

Still, probation is better than jail. So now, I wait. My counts are coming back up, but it’s going to take some time…and more patience.

Here is a photo of my cat genuinely confused by a card that looks like a hot dog. He even gave the card a few preliminary licks before giving up.

Here is a photo of my cat genuinely confused by a card that looks like a hot dog. He even gave the card a few preliminary licks before giving up.

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