Now What?

Friday night, I dreamed I was an on upstate train with my ex, who was a few rows in front of me. I had fallen asleep and woken up back in New York City, and I searched the aisles frantically, because I hadn’t said goodbye. I woke up unsettled, in that way you are initially relieved you’re not in that exact situation but still dimly aware that your subconscious is disturbed in some way.

I have moments when I am unbearably sad. The months ahead will be trying.

Mostly, though, I think it will be trying for my poor friends. I will be a pest, asking others how they got through it. I have seen friends through breakups and it seems like there’s a lot of sadness and distraction. There’s also whiskey and rebounds, which aren’t options to me. Well, maybe a little whiskey.

Time. Time keeps coming up, and I don’t have much time. I don’t know how much time I have. Who does?

All time I have must be savored. No pressure. Yesterday was a beautiful day and I couldn’t afford to waste it, yet at one point I also felt like my heart was too heavy to move. I felt as if I got up, my chest would fall into the table in front of me and pin me down. I called some friends from my friends’ backyard, and we commenced lifelong conversations about how to get through this life. I laughed. I’m going to make sure that I laugh every day still.

My time seems especially limited and precious yet I want to fast-forward through this actual time of feeling physically OK—almost normal, even—to get past this heartbreak.

Oh, that’s right. I’m feeling OK. I feel the best physically that I’ve felt since January. Throughout this past month, I have been feeling increasingly better as I recovered from the blood infection and put the chemo behind me. I expected to feel sick this weekend, and I still feel OK.

Obviously, I’m overjoyed to feel better, yet I feel I’m not appreciative enough since I’ve been so preoccupied with my stupid broken heart. This was the point that was supposed to happen in late January or early February, after which I’d plan vacations and getaways with my significant other at the time.

I can still do that, of course, except my companions will be different. I have so much joy in my life still and so many people with whom to share it.

Yet sometimes I wonder how I can move forward when sometimes I feel like I can’t get out of bed. I’ve been cheering myself by writing in a friends’ backyard, but I feel as if I’m the crying neighbor in Under the Tuscan Sun. I’m the quirky lady that comes with a Brooklyn apartment, a balding woman seen weeping at her laptop.

This week I have a port placement again. My MediPort was taken out in May in case my Klebsiella was lurking within, and I was given a PICC line instead. I actually prefer having the PICC line instead of the bulky needle in my chest with the MediPort; however, if I can get to a place where I no longer need daily hydration (fingers crossed), I won’t have to keep the MediPort accessed. I’ll have a weird bump in my upper chest, but I hope to be able to go to the beach and do normal things and have as normal and beautiful a summer as possible. I’d like to travel.

I’d like to find a purpose in life. I have had this nagging need to have a George Bailey moment and make big positive differences in people’s lives while I can. I haven’t been able to volunteer because of my erratic health schedule, but I’d like to try to figure out how to best help other people who also are hurting or need help. I’m joining cancer support groups so I can find new people to annoy. I’m going to try to take stock of what I like in my life and the things that don’t serve me and get rid of those things. I’m going to make a lot of mistakes, I think, and I’m going to feel embarrassed and silly.

So far, there’s good news so far on the health front. If I let it, that optimism could spread to the rest of my life. (I’m still a pessimist at heart, though, so we’ll see.)

 

Uncomfortably Numb

Since I’ve been battling post-cancer depression, I’ve made cursory efforts to cheer myself up. I have a lot of goofy T-shirts. For instance, the one I’m wearing right now has an illustrated rendition of the classic banana knock-knock joke and I find it hilarious. The only problem is that when someone smiles at the joke, they’re rewarded with a bewildered look, because I rarely remember that I’m wearing a funny T-shirt.

I need the shirts to combat my face. When I look sad, people do double-takes and I feel my sadness spreading like something contagious. Years ago, I was feeling pretty bad and a homeless man stopped in his tracks and told me a joke in an effort to cheer me up. A man carrying all his belongings on his back felt sorry for me.

I have been spending a lot of time at home, so as not to contaminate others with sadness, though I can usually keep it together in public.

The other day, fighting off a bout of sadness, I worked out wearing my “Powered by Optimism” T-shirt that was a gift from my boyfriend’s aunts. I’m not sure if the shirt and the workout-related endorphins cheered me up, but the shirt makes my boyfriend laugh when he sees me in it, because he thinks I’m a pessimist.

Then I put on the Howard Jones shirt I got at the Retro Futura tour last month that proclaims “Things Can Only Get Better.” My boyfriend sent the link to the song when I was in the hospital, recovering from the transplant, and it’s in my Stem Cell Transplant Soundtrack. (An aside: If you ever get a chance to see Howard Jones, do so.)

I even wore my “I am awesome” socks, also a gift, created by a company called Notes To Self, even though I always wonder why these positive sock messages aren’t called footnotes. I worked out in my “I Love My Life” T-shirt that I got at an Intensati fitness event.

Outwardly, I’ve been trying to stay upbeat, but feel unmoored and have been drifting into some pretty dark places lately. It’s as if I turned off part of my emotions to deal with the cancer and all that went with it, and now I can’t activate them again, except for a pervasive sadness. When I have to do anything, like get out of bed, I feel like Bartleby, the Scrivener. I would prefer not to. (An aside: We watched a short film version in high school English in 1994, and it doesn’t translate well to this medium, so it was unintentionally hilarious. It’s also the first time I heard of Moby; our teacher gave us a photocopy of an article about him because he’s related to Herman Melville. Looking back, it was sweet of her, but we weren’t cool enough to know who he was then.)

According to speculation (and Wikipedia), Melville wrote Bartleby when he was feeling a bit down on his writing career. Maybe that’s why it strikes a chord. I’m still freelancing, but without steady work, I might be spending too much time inside my head. (Actually, before the hospital, it was nonstop working.)

Come to think of it, the last time I was sad and didn’t have a job, I was 15. I spent my summer vacation painting a lot of my furniture black and listening to the Cure and Nine Inch Nails. I shouldn’t be left to my own devices.

Of course, this is bigger than teen angst. I realize I should be happy. I should be savoring life with a newfound appreciation, like good survivors are supposed to. But I know that “should” thinking isn’t healthy.

I have a lot to look forward to. I’m heading “home” to see friends and family—some of whom I haven’t seen in nearly two years. I need to plan the gatherings, but this depression makes me feel as if I’m moving through molasses (but not as tasty). I owe a lot of people invitations and emails. I’ve been lagging behind.

But I don’t think I’ve been much of a downer in person. Even with my sad face. I’ve been keeping tabs on my depression, and if it starts to get too much, I’ll figure something out. Or I’ll paint all our furniture black.

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Boo-hoo

The other day, if you’d passed the intersection near my street, you would have found me standing in the road, middle fingers raised at a car trying to run the red light and run me over.

No one would ever say I’m a delicate flower.

Someone did see this, and, as he crossed the footbridge, he comforted me with, “They’ll get theirs someday.”

I wish I could be that calm. My mom, too, has recently comforted me with assurances that everything works out. I used to believe that, but I’m struggling.

I have a hard time dealing with injustice and, despite my occasional street rantings, I’m really very sensitive. In this unfair, harsh world, you can imagine how things work out for me. I took that Briggs-Myers psychology test, and I’m an INFP (Introverted, Intuitive, Feeling, Perceptive). I’m sure there are successful people out there with this personality designation, but they’re mostly tortured artist types. I have no artistic talent—no sonnets to write, no brilliant novel within, no symphony to compose, no masterpiece to create. I don’t have the creative genius to excuse being bad at important aspects of life.

I don’t want to focus on the negative. I did realize during my treatment and with subsequent friend visits that I have a lot of amazing people who care about me, so I must be doing something right. But day-to-day existence has always been hard for me. Balancing finances and dealing with bureaucracy can easily lead me into the depths of despair.

I recently read something about how cancer patients often experience anxiety over their changing physical appearance. The baldness didn’t bother me that much. Partially, I think this is because I used to try to stand out, so looking like a freak is old hat. But I also realized, now that my hair has grown in—not to mention my eyelashes and eyebrows—that in a perverse way, I didn’t mind looking the part of a cancer patient, because I had hoped people would be nicer to me.

In the same way that looking weird and dressing in all black told people to stay away, in hopes they wouldn’t bully or be mean to me, I felt the same comfort with my bald head for all to see. It was like wearing a sign that pleaded, Please be nice to me. I have cancer.

And for the most part, people had been. But lately, I’ve had several disappointing experiences where it felt like people were being only temporarily nice to me, because I had cancer—and then they made a mental note to mistreat me at a later date. It’s been like I’ve been on the receiving end of rain checks for unkindness. It’s been made clear to me that in some cases, no matter what people say, it’s all about the bottom line.

I knew this day would come, when people would stop feeling obligated to be nice to me. I don’t expect special treatment. I worked through cancer and never wanted to use it as an excuse to be lazy or to be a jerk. I just want people to be decent.

As a kid, I was bullied. I was chubby and had no friends for several years. I was the weird, overweight, pimply girl with glasses who wore funny dresses. There are lots of movie and book characters based on this girl, so you can imagine how it went for me. Some people say I’m pessimistic, but I just prepare myself for the bad in people.

I wonder why it is that we always focus on the bad things we hear about ourselves. I’ve probably forgotten beautiful moments throughout my life but will always remember the group of girls a year younger than me who tormented me on the playground almost every day. Billy Ocean’s “Get Into My Car” was popular at the time, and one day the girls came up and sang, “Get into my car—if you can fit!” I’ll always remember that.

In eighth grade, I was at the mirror putting on makeup and some other girls wanted to use the mirror. “Why is she using the mirror?” one girl hissed to another. “She’s a loser.” They wanted me to hear. So now I remember. I still remember their names. Not long after that, I realized there wasn’t any point in wearing makeup, so I stopped for more than a decade. I wore black. I didn’t weigh much. I wanted to disappear, so people just wouldn’t be mean to me.

I guess I should have developed a thick skin, but I feel as if it’s still paper-thin. I’m back to wanting to evaporate. I feel like that bullied kid again, but instead, these discouraging words are from an unlikely source—myself.

During my beautiful, perfect vacation, the bartender at a Long Island brewery criticized our tip of $4.80 (on $24, on a credit card). “Who does that?” she said to her friend next to us. “Why didn’t they just leave me $4?” Her offhand comment ruined a good portion of my day, even though she didn’t mean to. I wrestled with melodramatic thoughts. Why did I bother to get through everything only to let this stuff hurt me so much? In some ways, it felt worse that she didn’t know I was the “bad” tipper. I wondered what every person ever has said behind my back until it was so much that it exploded within and dissipated, and I couldn’t even be sad anymore.

I hate it about myself that I’ll forget some aspects of my perfect friend-and-family-filled week but I’ll remember that.

I’ve been wrestling with a lot of self-loathing, especially with recent events. Am I really incompetent or cheap? I think I may have survivor’s guilt to some extent. When something small happens, I think, Why me? Why did I survive cancer and not somebody who has a job? Why doesn’t somebody with kids survive? Sometimes I feel like it’s unfair that I’m in remission. I feel like I don’t deserve it, and as I said before, I hate unfairness. When I’m exposed to life’s tiniest bumps, I now feel terribly hurt, then ungrateful, and then I just shovel all that into the self-loathing machine chugs along next to me almost all the time these days, waiting for me to feed it.

I know that, today of all days, my problems are trivial. I have to re-learn how to live in a cruel, unfair world. (Boo-hoo, I say to myself. Get it together.) For my part, I’m going to try to be kinder to people, because I know how much the alternative can hurt. (Unless they run red lights near my street.)

Recently, I have been explaining to people that I waited so long for the light at the end of the tunnel and now I feel like I’m standing at the end, blinking, unsure of how to live on the outside. Sometimes, on days like today, I want to crawl back in. But I know I have to move forward, even if the real world’s sun is so bright that it burns my thin skin.

Photo note: This is a photo of a fish from my vacation.

Control

I felt a wave of optimism yesterday as I left my apartment to go grocery shopping—mostly about the weather, which seemed to have shifted from a ceiling of gray, ominous clouds to blue skies dotted with puffy clouds. I put on my new lion espadrilles that aren’t supposed to get wet and set out, noticing along the way the old Poland Springs plastic water bottle half-full of urine I’d seen a few weeks ago. I wasn’t sure if this was a good sign or not.

The urine bottle, oddly, made me think about how much I’d miss New York if I left. Everyone seems to be leaving or talking about leaving these days, in light of how expensive it’s getting to live here. I looked up an apartment I saw for sale in my neighborhood, just for fun, and it cost a million dollars. I’m not using that as an exaggeration, like when I talk about how much a pint of Jeni’s Splendid Ice Cream costs here. This apartment really cost a million dollars. For that price, area urine should be discarded in Voss bottles.

This is one of the only places I feel really comfortable. I enjoy the balance here. For every bottle of urine, there’s something beautiful and unexpected. For every time there’s the smell of rotting garbage or urine (unbottled, I presume), there’s a linden or chocolate cake breeze. And vice-versa. I find it oddly comforting.

Halfway to the store, I felt several drops of rain and looked up to see a lone gray cloud above, making a few half-hearted attempts to rain only on me, as if I were an unlucky comic strip character. It seemed like a physical embodiment of my recent post-cancer depression—sun and beauty all around, and a small, plaguing sadness trying to descend upon me.

If it started to really rain, I thought about ducking into a store that sold shoes suitable for rain if I came across one. I wasn’t too upset about the threat of a small shower—I’d figure out what to do about my shoes.

In fact, a good percentage of my clothing is bought out of necessity—rain jackets, hoodies, comfortable shoes. I consider weather for which I’m inappropriately dressed a cosmic sign to buy necessities I’m loathe to purchase. I couldn’t control the weather, so I’d make do.

I usually think of myself as pretty easy-going, not a control freak. But recently, I’ve been thinking a lot about control, and lack thereof.

Tuesday, amid the flurry of news feed posts about Robin Williams’ suicide (which also got me thinking about control, but so much has been said on this subject, I’m just going to let the man rest in peace), another story caught my eye. New York Magazine posted a link to a story called “Avoiding the Breast Cancer ‘Warrior’ Trap” by Peter Bach, the doctor who months ago wrote an honest, poignant piece about losing his wife to cancer. It was teased with, “Let’s get real: Cancer doesn’t really make you stronger.”

In the column, Bach talks about being at a Gilda’s Club luncheon, where Good Morning America anchor Amy Robach spoke about her recent breast cancer screening and treatment. In his opinion, she oversimplified two complicated, controversial issues: the mammogram effectiveness debate and her decision to have a double mastectomy. I’m going to leave those topics to the doctor and the breast cancer community.

What struck me was that Bach was troubled by Robach’s assertion: “I kicked cancer’s ass.” Labeling people who end up in remission from cancer as warriors, Bach argues, negates those who die from the disease.

It’s not the first time this has been brought up. In Pink Ribbons, Inc., a documentary about the corporatizing of breast cancer, the filmmakers talk to women with Stage IV breast cancer about how the “survivor” label implies that those who don’t make it didn’t fight hard enough.

I’m not sure how I personally feel about the survivor label. You have definitely gone through something and survived. I feel as if I’m in the middle as someone with refractory Hodgkin’s lymphoma. I survived…for now.

I think the more nuanced point that Bach makes is that there’s an erroneous implication that surviving cancer is based on how hard you fight, that you can somehow control the outcome more than you can.

I would agree with him there. People fight very hard and still lose. In the case of relapsed and refractory Hodgkin’s lymphoma, you emerge from battle only to discover you didn’t win the war and have more fights ahead.

Cancer is extremely unfair. In that aspect, I think the war/battle analogy is accurate. Do we say that those who don’t survive are any less brave?

If there’s a battle comparison to be made, a friend who read my last blog about post-cancer depression said that since I’d been fighting cancer for so long, my depression was like the emptiness of missing battle.

It’s true. Instead of a proud returning war hero, I feel more like the soldier in The Hurt Locker, disconnected with a day-to-day routine, unsure of how to live in the world.

A few phone calls to the department of labor turned me into a quivering mess of emotion and despair, though I suppose dealing with bureaucracy has always turned me into a sad Kafka-esque figure, pained by the absurdity of human existence. Even a glance at a tax form or a health insurance explanation of benefits quickly sends me to the depths of existential despair.

I feel as if in the last year and a half, I’ve lost control over too many things. I swing from struggling for control to recoiling from taking it back. I don’t roll as easily with the punches.

I think that the idea of being a “cancer warrior” is a label that’s meant to be helpful and empowering, but it also can add unnecessary pressure when you’ve been shown just how vulnerable you can be. I think people are looking for control, when so often in the case of cancer, there’s frighteningly little of it. Your own body has tried to kill you. Is the illusion of control helpful or harmful?

Everyone deals with things differently. I’m sure some people feel invincible after cancer, and I don’t begrudge them. I only envy them. I thought maybe once I’d faced cancer, I would feel braver, but if anything, I’ve felt more unsure of myself lately. I’ve been struggling to re-acquaint myself with living in a world I’ve always had trouble fitting into to begin with.

My boyfriend asked why, when I complained about having so much to do, I prioritized working out. I do want to get stronger and do activities to maintain a healthy heart and lungs that put up with a lot of potentially damaging treatment. But the underlying reason is there: The need for some control, even if it’s misguided. It’s been a way of trying to re-assert some control over my traitorous body, a way to say, “I’m still in charge of some things around here.”

I’m not sure if I agree that cancer doesn’t make you emotionally and mentally stronger in some ways. Though now I feel weakened, I hope I’ll show some strength in the long run.

I’m not sure that I feel proud to have survived cancer (for now). Just relieved and still shaken.

In this life, we have such little control over some things, like cancer or the weather, and also a terrifying—often daunting—amount over how we react to the things we can’t control. As I flail and falter, I hope to find my balance once again.

Photo note: The wise cat knows not to take my espadrilles in the rain and wears them only indoors.

Depression

People often ask me how I’m feeling, following up with, “You look great!” My hair has returned and has grown in just enough to the point where it looks like it could be an intentional short cut. A few weeks ago, a punk rock girl passing by me as I waited for the bus told me that she loved my hair.

My eyebrows and eyelashes are back. My mustache also has returned. My minimal beauty routine is back to involving mostly hair removal.

“Great!” is my usual response to the query about how I’m feeling. Physically, I’m almost back to normal. I still have a few joint aches left from losing muscle quickly during my hospital stay. I have a few surgery scars along my neck and a tiny bump from the chest catheter, but otherwise, I feel no worse for the wear.

Truthfully, though, I’ve been battling some post-cancer depression. It’s been nearly two weeks since my doctor told me that it was “all good news,” despite the remaining spot lighting up on my PET scan. I feel as if I should be out jumping for joy and painting the town red.

But I feel as if I have that lead weight of depression banging around and sinking in the middle of my chest. I wish it would land on the troublesome pancreas spot and blot it out, and then all my issues would be solved. It’s not a crippling depression or that I’m incapable of being happy. The weight is sometimes buoyed by good feelings and events, yet the gnawing feeling keeps coming back. Sometimes, I don’t feel like getting out of bed.

It’s frustrating, because I’ve spent so much time—more than a year and a half—longing for things to return to “normal.” But I don’t know where that place is anymore. It’s as if, by trying to return to some sense of normalcy too quickly, I have the emotional equivalent of the bends.

It’s somewhat comforting that this is normal, and that cancer patients often put some of the scariest feelings away while in treatment, only to have it come back later. It’s odd, because I felt as if I was dealing with my emotions through treatment, but I feel as if some things are finally hitting me now.

I’ve also found it helpful to talk to people. A lot of people have been through depression at least once. Like panic disorder, people just don’t tend to talk about it much. Depression often makes no sense from the outside. It often seems to strike when things seem to be going well. Those who have dealt with depression know that it’s not a simple matter of cheering up.

So even though I know this is normal, it’s still hard not to beat myself up a bit for feeling bad. (Also a normal thing, if not constructive.) I’m (probably) cancer-free! I have an amazing life. What do I have to be sad about? It’s difficult not to apply the Bob Newhart “Stop It” therapy to yourself. (Hyperbole and a Half has an excellent description of what it’s like to beat yourself up about feeling depressed and about slowly emerging from it.)

I’ve also had a little bout of my old companion, anxiety. A few weeks ago, I couldn’t shake the feeling that something bad was going to happen. I’ve been trying to deal with the old fear of fear, a vicious cycle I’d like to not get caught up in again.

I’ve been trying to stay busy and push away the depression and anxiety. A few weeks ago, we went to brunch with a friend and didn’t return home until the evening. I kept trying to find new things to do so I wouldn’t have to be alone and still long enough for the lingering gloom cloud to descend upon me.

When thinking about returning to normal life, I feel a little overwhelmed. Sometimes small decisions leave me incapacitated. Not that I’ve ever been very capable of making decisions. Every choice I make is full of deliberation. It drives my boyfriend crazy.

Last weekend, four people who have known me for a long time happened to be in town, and that helped me shake off a little bit of my depression. It was good to see and talk to people who knew me long before all of this happened.

What struck me was that after surviving something, there’s this pressure. Whether you think you’ve been spared for some reason or have to live life to the fullest, there’s a new pressure, a self-imposed stress. My own demon has been a feeling that I have to get back to normal, work-wise, which is impossible. Last year, I lost my full-time job while undergoing chemotherapy and, before my hospital stay, I was taking on as much freelance work as possible to prepare for not working. So I feel as if I should always be working now, but that’s not normal.

Taking some time off when friends were in town were therapeutic. I’m also taking a weeklong vacation soon. It’s going to take a while to restore balance to my life.

I have been feeling a little bit better, though the melancholy found its way into my dreams. The other night, I had a dream that I went to a high school reunion, but it happened really fast and I didn’t feel as if I had time to talk to anyone. In the dream, while everyone happily chatted and went on their merry ways, I was overcome with melancholy.

I know dreams don’t always mean something. I had a dream a month ago or so in which I was taking an online quiz where the multiple choice question was based on the Andrew W.K. song and my options were: “What kind of partier are you? A) It’s time to party, B) We will party hard, C) Party hard, party hard, party hard.” But I felt as if this recent dream was trying to tell me something. I’ve had a hard time dealing with the passage of time lately. I think I’m belatedly dealing with the issue of mortality, something I pushed away during treatment.

Eventually, I know I’ll emerge from this. In the meantime, I’m going to keep my chin up and remember that this is normal and it will pass.

Photo note: I realize I said it’s difficult to cheer up, but in case you do need cheering up, here is a photo of my cat wearing tiger shoes.