After my New York Times column in the Disability section, “Dating While Dying,” I got a few requests for interviews. One was from healthy living expert Dr. Pamela Peeke, a name I’m familiar with from my women’s magazine editor days. Dr. Peeke hosts the popular HER podcast on the RadioMD network. I talked to her about life, death, fear, relationships, and how online dating is more daunting than terminal cancer at times.

One thing that struck me as I listened to the podcast was how many people reached out to me via Twitter and email in response to the column. I haven’t even had time to write back. However, I hope that I inspired people to get out there and stop being afraid to do things, particularly after a cancer diagnosis. I know it often seems like after cancer, you’re waiting for the other shoe to drop. It might. It might not.

Also, dating is terrible. Fear of rejection is the worst. If I hadn’t gone into it as a fun extracurricular hobby, I don’t think I could have done it. Dating with a disease or disability is hard, but after I realized it kept me in a bad relationship, I realize my fear kept me from being free and happy. Before I had cancer, I didn’t think I was pretty enough or thin enough or cool enough. My nose is funny-looking. There’s always going to be something.

Dating is one of the scariest things I’ve ever done. If I didn’t have my dating app sherpa to share what he calls his “best practices” and to commiserate, I don’t know that I could have done it. He made it fun. And I found love, of all places, on Tinder. That’s crazy.

Please check out the Dating While Dying episode, and if you listen to it as an Apple podcast, don’t forget to rate and review the show. My headshots are old, so I just submitted a recent photo for the HER page. It’s me in a pool during a recent staycation. You know what they say: Dress for the job you want, not the one you have. Happy listening!

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.

 

I am getting a new MediPort today, on the left side of my chest, because my previous port was on the right side, before it was removed last month during my blood infection.

I actually prefer my PICC line but I am hoping that I won’t need daily hydration IVs. The port will leave a bump in my chest, and if I could not have the needle access all the time, it would be less bulky and painful. I could maybe even have somewhat of a normal summer if my symptoms stay away. I keep campaigning to end the IV fluids.

Right after a pep talk I gave myself yesterday to embark on a new life, I promptly fell down the stairs while wrestling with some bags. (I have been staying away from my apartment for most of his packing.) It happened in extreme slow motion, so I miraculously didn’t break anything. I ended up with scraped up legs and knees and a twisted ankle as I sat dazed on the steps that smell of urine. (It’s urine season.) I hope they can fix my ankle while I am out for this procedure.

On a more serious note, I feel really bad when I have to come in for procedures. I feel so abandoned and alone, even though he wasn’t always here. I cry the whole time the nurses ask me questions. It’s so silly. It will get better. There is something so lonely about having this stuff done now.

I am looking forward to hopefully a summer of more normalcy and fewer infections. In the meantime, I am going to watch this in depth discussion of Gigi Hadid and Zayne and the Lee family and ponder how you get a gig commenting on celebrity gossip.

Last month I started a microwave fire. It wasn’t the first microwave fire I’ve started. As the door slid open and a flame shot up, I stood in shock for a second before I turned to a few people and said, “Help.” It wasn’t an exclamation, so much as statement. “Help,” I said. “Help. What do I do?” Someone said there had just been a fire drill and she knew what to do. She disappeared for a minute. In the meantime, I debated whether it was electrical fire that shouldn’t have water on it. I closed the door because I remembered oxygen feeds the flames. (That actually put it out.)

I told friends later that week what had happened and acknowledged that’s how I am in a crisis. I call for help. Someone should do something. I’m not one to jump into action though. I look for a responsible party.

In personal crisis, I’m not sure if I’m the same way. I’m supposed to take care of that stuff. Someone should do something.

Luckily, so many people have jumped in to help without me asking much outright. Maybe I send out a silent signal. Help. Help. Help. 

Since Thursday evening, I’ve been silently screaming. I’ve had trouble sleeping, aside from Saturday night. When I can’t sleep my neuropathy flares up, so the medication for that helps me sleep. Exhaustion will find me again and bring sleep, overtaking heartbreak and worry. This morning,  I woke up at 4:45 to start my IV drip and have been staring at the guest bedroom ceiling at my friends’ house, with a short and welcome interruption from their sweet tabby.

Big, terrifying changes are on the horizon.

I am going to have to swallow my pride and ask for help. A lot of help. More help than I’ve ever asked for before. I feel guilty because people have helped me so much, but I hope that if I cast a wide net in asking that everyone can help a little bit and I won’t feel like such a burden to anyone. To everyone who’s asked me if I need anything, I probably will in the coming months. I might need to ask people to come and help take care of me. I don’t need much right now. (And when the end-of-life care is needed, there are people for that.) I’m really scared but I’m also optimistic as I currently have so many offers of help in the form of listening ears I am behind on phone calls.

I don’t know if I like the person I’ve become. I’m afraid I’ve become a bad person to people close to me and haven’t acknowledged their needs. The thing is, I feel like I’ve tried and yet I failed and what does that mean when my best isn’t good enough? I feel like a terrible person almost all the time. I am a ghost of my former self and sometimes I am haunting my life. Sometimes I feel like I’m not supposed to be here or wanted here, like a guest that’s overstayed her welcome.

I have thought about ending things myself during dark times. Now that I always feel sick and I’m losing people close to me and I’m dying anyway, I still obviously think about it. I won’t do it. I find something to latch onto. Sometimes it’s something as innocuous as an upcoming deadline or a task I’m supposed to complete. It’s also because I don’t want to hurt people who love me or leave them with guilt.

I know a lot of people can’t understand what it is like to think about taking that way out. When someone does, from the outside it doesn’t make sense. They have so much to live for. Even me, even though I am dying and everything seems like it’s falling apart. I have things to live for.

You have to genuinely believe everyone would be better off without you. It feels that way to me sometimes, I admit. Even though everyone has been so kind, it really sometimes feels like if I were gone, the world would be a better place. Also, sometimes it seems like it hurts so much to go on, it’s impossible. It’s too painful.

Everyone has various survival mechanisms. As someone who’s struggled with depression sometimes, it’s as though sometimes mine is broken. Or maybe I’m too sensitive and I don’t have a cover for my survival mechanism and it gets rusted or shorts when its exposed to pressure or sadness. Then you look at other people dealing with similar things or worse things and you feel broken and sad and more depressed and it makes you feel worse. It makes you want to run for an exit. I won’t. I’ve also learned to ask for help.

I didn’t mean to get that heavy there. Lack of sleep and rainy days have made me melodramatic.

The help that I’m going to be asking for in the coming months, however, is hopefully less emotional and mostly logistical. Staying with me sometimes. Coming with me to doctors’ appointments. Maybe taking care of the cats. Things people have already done like bring me my glasses when I am unexpectedly whisked off to the hospital (though I try to carry my glasses with me now.)

I’m trying very hard not to be bitter and angry and sad about so much because no good can come of it. Well, the sadness I can’t help. There are still some positives, hopefully, ahead of me somewhere along the way. Within the past five minutes, for instance: I just got an inbox message from a friend and it’s a YouTube clip of a large crowd in Dublin wishing her a happy birthday. I have a purring tabby on my lap. No, wait. A purring tabby on my laptop who just erased some things. I must go attend to this cat and stop indulging in sadness.

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.

Something strange has happened since my hospital stay and stem cell transplant. My ire is gone.

I just wanted the cancer gone, but the radiation or the four days of chemo seems to have removed some residual anger. I’ve wondered before if the stubborn spots lighting up on my PET scans were angry words that I swallowed and lodged in my trachea or the molten glow of my temper in my gut.

I joke that Seinfeld’s Frank Costanza is my spirit animal, because when I try to calm down, it’s basically as effective as angrily shouting, “Serenity now!”

Part of my lessened anger, I realize, is because I haven’t been around people. I’ve been pretty isolated at home and at the hospital, where everyone was unfailingly nice to me. I know a few train rides will raise my blood pressure. But I feel as if I’m experiencing something more long-lasting than the peace of isolation. (As isolated as one can be in such close proximity to 10 million other people.)

I have a legendary hold on my grudges. My mental nemesis list is long and spans my lifetime. It includes Prince and the supposed friend who told my second-grade crush that I liked him. In the latter case, it’s not fair, because her last name rhymed with the word “beaver” and, unfortunately, she was bucktoothed, but I never made fun of her like the other second-graders. Why would she betray my confidence and scar me so I wouldn’t reveal my crushes to anyone again until I was 14 and started dating? I can picture her triumphant, toothy grin after her big reveal.

I still feel a flush of humiliation thinking about that day. (I think the guy in question transferred schools the next year—not because of me—and I saw him as a freshman at Ohio University during my brief time there before I transferred—not because of him. But I still felt embarrassed when I saw him a decade later.)

As you can probably tell, I take things pretty hard. I joke about it, but often I can think about an instance where I felt wrong or hurt and feel just as angry or upset as when it actually happened. It’s something I don’t like about myself. Also, it was no fun to feel those things the first time, let alone again. And again. And again.

That’s not to say I don’t get over things or that I don’t forgive people. True, it’s pretty easy to get on my nemesis list, and it’s pretty hard to be removed. It might involve a jar full of the offender’s remorseful tears. Or, more often, a simple, “Sorry.”

But how do you forgive someone who never asks for forgiveness? Or—even harder—how do you forgive someone who truly believes the way he or she treated you was justified? That’s so hard. For me, bearer of grudges, it’s almost impossible. I’m still working on it.

I may never be able to look my second-grade crush in the eye should I ever see him again, but I forgave that girl a long time ago. Yet that day in second grade was probably the first time I was blindsided by someone who I thought was a friend suddenly and inexplicably turning on me. It happened again when I was 20. And 22. And 24. And 31. And 32. Probably some times in between all those too. I guess I don’t learn.

If you think I haven’t worried that I’m the problem, don’t worry—I’ve given it plenty of thought and therapy sessions. At one point in my 20s, someone who I would say was truly malicious drove a wedge between me and some other friends. She was so skilled at it, and I felt so raw and hurt and vulnerable. I let other people make me feel as if I were a bad person and if I were crazy. Looking back, I can say that’s crazy.

Luckily, I had other friends who reassured me that I wasn’t insane or a terrible person. But I was pretty broken. I even went to therapy for a while to put the pieces of myself back together—and reassemble myself as a more confident person. In a way, that girl did me a favor.

I realized a lot of those people who hurt me were insecure about themselves and tore me down in an attempt to feel better. I have my own insecurities—less after this cancer battle—but I certainly have had plenty over the years. When I recognized insecurity in others, I saw a kinship with the hope we could boost each other up. Everyone’s insecure about something. But when it’s someone looking to belittle someone else—well, I might as well have a big target on my back.

Yet it’s so hard when someone you trust tells you something she believes to be true about you to not take it personally—even when you realize, on some level, the situation is really about her (or him).

I’m pretty gullible at times. It’s dangerous when someone I trust tells me something terrible about me that isn’t true.

I obviously tend to dwell. The other day, though, I found myself reflecting—not dwelling—on some past relationships with family and friends. It felt different to reflect. I thought about things without the anger.

I was really thinking about wasted time. Since the things I can do post-transplant are still very limited and I’ve been limited to varying degrees for almost a year-and-a-half, I reminisced about being well—but I also remembered feeling terrible at times. Mostly, this was because I was dwelling on a past hurt or wrong, making it last much longer than it had to. In some cases, instead of letting myself heal from someone’s words, I picked at it, like a scab, until it became a giant wound.

I regretted the time I’d lost to feeling bad about myself. Wasted time wasn’t any time spent with friends. Or moments spent rubbing the belly of a cat when I had other things to do. It was time I’d stolen from myself. Now that cancer—something that both is and isn’t me—has stolen time, I’m more protective of it.

Poet, author and activist Maya Angelou died today, and the Internet was peppered with her words of wisdom. I read a long quote about forgiveness, and Angelou certainly had a lot to forgive (and a lot to say on the subject). One of her well-known quotes: “It’s one of the greatest gifts you can give yourself, to forgive. Forgive everybody.”

I’m not going to forgive people for them. I’m going to do it for me.

It’s still really hard, even with less ire.

Could this be a good side effect of the chemo? With so much poison coursing through your veins, there’s no room for additional poisonous thoughts and feelings? Could I have been hanging on to anger in the marrow of my bones? Bones seem like as good a place as any to harbor resentment, being hollow and all. I would think organs or even muscles are too soft for hard feelings. The stem cell transplant was supposed to be a re-birth of sorts.

I have to confess that there’s also something else about forgiveness that appeals to me. If you tell someone who hasn’t asked for forgiveness that you forgive him or her when that individual doesn’t admit to any wrongdoing, there’s a good chance it will really annoy that person.

OK, so maybe the old me isn’t completely gone. For now, I hope that the cancer has left, along with my ire. If not, I have to remember that I can control at least my recurring anger, my emotional cancer of sorts.

Photo note: When I’m in doubt of what type of photo to put up, I use a cat photo. I forgive this particular cat on a daily basis for something, almost immediately, because—well, look at that face!

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.

This week, after sharing my blogs about having had panic disorder and my recent feelings on everything that’s happened and things I’ve lost (and gained) to cancer, I thought of that quote:

“Be kind, for everyone you meet is fighting a hard battle.”—Ian MacLaren

So many people reached out and told me about their experiences with anxiety disorders, cancers, chronic illnesses and hospital stays that I had no idea about. They were offering sympathy and support, and, while I wasn’t surprised I know so many strong, wise people, I was kind of surprised that I didn’t know what friends had been through.

Most of these people aren’t casual acquaintances, either—we’re talking about people I’ve known most of my life or people I’d see every day at work. Since I’m so open about my dealings with panic disorder, I thought I’d known about other people’s struggles, but whenever I mention anxiety, so many others come forward and talk about their experiences. That’s why I think it’s so important to talk about panic and anxiety disorders—everyone feels alone, but it’s really shockingly common and not something that people should feel ashamed to talk about.

It’s strange that now that I’m finally recovering, it’s the time I finally look like a cancer patient—thin and balder than ever. For most of the time I’ve been going through this cancer journey, I’ve looked like my old self, or a lady with extremely short hair. Now I look like I’ve fought a hard battle—and hopefully, I’m going to start looking like I won.

Sometimes, when I looked OK and felt terrible and scared, I just wanted to lash out or beg strangers to be nice to me. If I had no idea that friends have been through their own battles, silently, then it goes to show you often have no idea what people are dealing with on their own.

After this, I’m going to try to remember that everyone is fighting a hard battle and to be kind. (Not too kind, though—I do live in New York and I don’t want people to think I’m getting soft.)

I’ve started this post at least half a dozen times since I started my blog. It seems odd to be writing my love letter to working out when the most strenuous thing I’m up for is walking. My left arm is still a little immobile from phlebitis. I have a leukapheresis catheter in my chest that I have to be careful with, and I have a blood clot in my lung that leaves me winded after a flight of stairs. My hemoglobin is low, so I’m often and easily tired. I haven’t been able to work out for nearly a month, since before I went in for the last round of high-dose chemo.

Yet I still feel strong. Throughout the treatment—and now, more than ever—I’ve been drawing on what I’ve learned from my workouts and my yoga practice.

Physically, I did get some compliments on my blood pressure, at the beginning of treatment. Years of trying to perfect the savasana “dead body pose” in yoga helped when I had to stay perfectly still for scans and my radiation mold measurements. I will have to stay in good cardiovascular shape, especially as all this chemo and radiation takes a toll on the heart and the lungs.

But I think I can say that without yoga and fitness classes, it would have been a lot harder to get through all of this mentally. While I thought I was building muscle and flexibility, I was actually becoming stronger in ways I didn’t realize.

In December 2013, when I noticed a small bump that turned out to be two dislocated ribs, I was irritated that I’d have to modify my fitness routine for a month or two. That, of course, has turned out to be more than a year, since those ribs were dislocated by Hodgkin’s lymphoma tumors. I’ve had to take time off from working out, adjust my routines and generally change everything.

In between treatments, when I receive the OK to work out, I do what I can. Sometimes I wonder if it’s worth it, but when I think about how working out has helped me overall, I know that it is. The muscle tone will come and—in the next few months especially—go. But the benefits go way beyond that.

Change is often difficult, but it’s possible. This was probably the first thing I ever learned. I’ve said this before, but I’m not naturally a physically active person. I was a chubby kid and always the last person picked in gym class. Very last—after the kids with asthma and injuries.

It wasn’t just that I wasn’t fit—I’m also extremely indifferent to any kind of sporting competition. That won’t change. I will spend 10 minutes agonizing over a Scrabble word, but I lose interest in winning any kind of sport immediately. You want the ball? Have it. The promise of being left alone is enough for me to surrender. The opening scene to the old MTV cartoon Daria, where she refuses to hit the volleyball and her teammates eventually collide to cover for her—that is pretty much the animated version of me in gym class.

Yet I started working out on my own in high school, first with Cher’s A New Attitude step-aerobics video. (Her outfits are pretty fantastic.) I discovered I kind of liked working out, and eventually found other things I enjoyed—yoga and fitness classes. I’ve tried to make working out part of my everyday routine. Even though I skip a few days, intending to work out every day helped me to at least do it about five days a week.

I’ve also never been a morning person, but managed to become someone who regularly woke up at 5:15 or 6 am to go to yoga or boot camp class. I found I enjoyed this thing called morning, which I’d avoided for years. Also, it was helpful to roll getting out of bed and working out—two things I tend to put off—into one fell swoop of determination. So the night owl and the last person picked in gym eventually learned to be the early bird at class.

The hardest part is what makes you stronger. Those last few seconds in standing bow or being in a plank sometimes seem impossible. That’s when the instructor usually says something encouraging like, “These last few seconds are where the change happens!” Or: “This is the hard part, but here’s where you’re building strength.”

I’ve thought about these words a lot as I near the hardest part of my treatment. A few months of dislocated ribs turned into six months of chemo, which turned into more than a year of chemo and another three to six months of recovery. The most difficult part still lies ahead. Heading to yet another appointment or sticking on an AquaGuard over my chest catheter before showering, I’ve cried and declared, “I don’t want to do this anymore,” and sometimes, “I can’t do this anymore.” I’ve been sliced open and poked and poisoned for a year now, and I’m tired.

But I don’t have a choice. I’ve learned that just when you think you can’t do something anymore, that’s when you need to power through. It’s time to cue “Eye of the Tiger” and do this. The hospital bedside yoga and laps around the floor, dragging my chemo pole with me, will be my one-armed Rocky pushups. Right after the stem cell transplant, I’ll be physically weak and in a bit of a mental fog, but overall, tougher.

Patience. At this point, after a year of treatment, I’m impatient to get this over with already. A month in the hospital seems like an eternity. But I know that things always seem longer at the outset. Sometimes it’s just 45 minutes of boot camp or an hour-and-a-half of Bikram yoga, when I’m not feeling particularly ready to push myself. Every now and then, in the first few minutes, I despair. How am I going to make it through 80 more minutes?

But I do. I had the same feeling when I signed up for a 30-day Bikram yoga challenge. When I marked off those first few days, the month stretching out before me seemed so long.

I have to be patient. I have to draw on the patience that comes from working on the same 26 poses in Bikram yoga. Or the patience from a Kundalini breathing exercise. I can do this.

Encouragement and support go a long way. Almost every day that I’ve worked out or attended a yoga class, I’ve been told that I could do things that I often didn’t think I could. (Sometimes, I felt absolutely sure I couldn’t, but did it anyway.) Eventually, I started to believe it. That’s been helpful for when I’ve had to endure being poked for multiple IVs that give me the heebie-jeebies or sit still for another round of tests.

People in classes have always been supportive—and that also extends beyond the fitness center and yoga room. I’ve met some great friends through working out, and I’ve received such nice messages from my boot camp pals, people I’ve met through yoga and the barre3 community.

Once I finish my hospital stay, I know it’s going to be a long time to regain my physical strength. I’ll be easily tired, and it will be months before I even get back to “normal,” before I can even think about working out. But thanks to fitness and yoga classes, I have the strength, patience and support that I need until I am back to 100 percent.

 

Today I was editing a business story, and within the article, there was a mention of the someone’s death. As I Googled for more information about the business, another article revealed that the death was caused by cancer. There was an ache, a discovery of a tumor and spreading cancer, followed by chemo and radiation, which failed in this case.

It was sad and unfolded in a few paragraphs. It seemed abrupt and unfair, as cancer often is.

I thought about why cancer is so feared and reviled. It sneaks up on you. Symptoms sometimes build up for months, but they seem like nothing. It seems as if all of the sudden you’re no longer someone with a weird bump or a twinge of pain, you’re someone with cancer.

Then your life is stolen. Often, this is piece-by-piece, with time at doctors’ appointments and in machines and hooked up to bags of chemotherapy drugs. There are the days spent not feeling well or time sleeping. Also stolen are the things you can’t do, whether you don’t feel up to certain things or aren’t supposed to do them. Time not spent in the sun. Time spent not traveling. Events missed, because you’re not sure what’s going to happen. I’d love to, but I have cancer.

After it steals your energy, it often goes for your hair. Some people lose even more to surgeries, parts and pieces that won’t grow back.

Your “normal” life is stolen and it’s replaced with an often-unsatisfactory facsimile, a watered-down version. Chunks of time go missing to hospital stays. Sleep is sometimes constant because of drugs and fatigue and then elusive because of worry and stress.

But some people don’t get their lives back at all. This story was a sad reminder for me. It put things in perspective.