A Pain in the Neck

Yesterday I got a call from the doctor’s office to confirm a chemo appointment scheduled for today. “Don’t I have chemo every three weeks?” I asked, confused. “I don’t have chemo until next week.” The schedule did indeed say that I had chemo slated for today, so either I was confused or the appointment was wrong. I asked the scheduling person to confirm with my oncologist’s nurse and waited for a call back.

In the meantime, I did some calculations and mental rescheduling. I have a friend in town this week and my mom in town in two weeks, so the scheduling wouldn’t be ideal. However, chemo every two weeks would mean I would be done much sooner—by the end of June, in fact. I had just calculated my new end date and was looking forward to having chemo over with when I got the call that it was an administrative error and that I do have chemo every three weeks. They rescheduled me for next week. I was a little bit relieved but also a little disappointed. If this chemo works, then I’m not done until the end of July.

I’m often waiting. Five years ago, I was waiting for the end of my lymphoma chemo. Then I was waiting until after my stem cell transplant, then waiting to recover. I’ve waited for chemo rounds to finish, for hospital releases, for surgery recoveries. Then things will be better.

This time, it’s a little different. My cancer is more of a chronic disease. I won’t ever be done with this. But I’ve also learned that there’s no magic time when things will be perfect. Sometimes I’ve even looked back on the times when I was waiting for things to get better, knowing in hindsight that those times weren’t so bad.

I’ve often waited for something to fall into place, even before illness. It’s easy to think “once X happens, then everything will fall into place.” Once I’m done with school, once I have a relationship, once I get my finances in order, once I get in shape, once I meet this deadline, once I make more money…etc. Sometimes it never happens. A lot of times, it does happen, but by then, something else has come up. Things hardly ever fall into place all at once. When they do, I’m often too wary of it being a calm before a storm or worried the other shoe is going to drop. Though I try to savor it, I’m also keeping an eye on the horizon for gathering clouds.

This time, I’m going to try to enjoy the good days without focusing so much on an end point. I don’t want to jinx myself, and I have days when I feel a little meh, but I have days when I feel better than I have in months. Diarrhea for four months (one third of a year!) has been pretty rough. Savor your solid poops. The chemo has aggravated my neuropathy a bit, and I sometimes get a little dizzy and sometimes my stomach is off, but I feel as if I’m improving a little bit, and more importantly, it’s given me a little bit of hope for a window of wellness. I need to keep in mind that August isn’t going to be a magical end point.

With the chemo, I know I don’t feel well the week following treatment and then I progressively feel better until the next round. I expect, as with the other times, there will be cumulative effects so I might be a little run down by August. Plus there are the unexpected things like possible infections. However, I know that I should savor any time I feel better and that along with the low points, there hopefully will be good as well.

If you read my last blog, written during a weekend while I was tired and sick from chemo and showing no improvement, and then saw me later in the week and over the weekend, I would seem like a different person. I even felt guilty, as if I was in one of those old sitcoms where the person wears a neck brace in court after a traffic accident and then is caught in a lie when they’re carefree and frolicking later.

Through Wednesday I hadn’t been feeling very well, but something shifted that day. The unwell feeling was different, as if my digestive system was actually trying to do something for a change. On Thursday, I suddenly felt better than I had in months. In fact, I didn’t just feel a clearing of the chemo’s side effects of nausea, fatigue and pain, but my diarrhea subsided a little bit.  Though yesterday I stopped improving and felt a physical setback, but I hope it’s temporary.

Last Monday and Tuesday, I was avoiding small talk with people, and this weekend I was back to waving to neighbors and talking to community garden members. I had friends in town this weekend, and we went to the David Bowie exhibition at the Brooklyn Museum, met up with more friends to celebrate Record Store Day, then headed to the renowned pizza place in my neighborhood for a late dinner after putting our names in for a five-hour wait. (There’s always been a wait for this pizza, but it’s gotten progressively more ridiculous until its appearance on a TV show recently made the pizza so sought after that you have to get there before they open at 5:45 to put your name on the list to even hope of getting in.) The next day, we went to my new favorite pizza place in my neighborhood for the Grandma Pie, and we stopped in my community garden. We also ended our Bowie extravaganza with a stop at the Broadway-Lafayette subway stop, all decked out in Bowie. I was out and about in the world, and it was nice.

I got ice cream and then my guts, which had been feeling questionable, started roiling on the way home. At the very least, I have hope that it will subside and that I might improve after chemo next week. Living without hope has been difficult, so the glimmer of wellness has done so much for my mood. I’m trying not to get discouraged today. I’m also so cautious about being optimistic.

In other good news, the GoFundMe friends set up reached its goal, and I’l be able to pay the $1,000+ for the month of COBRA interim health insurance and continue to pay for some medications that insurance doesn’t cover.

I wore my Howard Jones “Things Can Only Get Better” shirt yesterday because of a Friday night discussion about him and because in my wardrobe of concert tees and black, it’s one of the most cheerful items of clothing I have. Hopefully, things are looking up.

The spring weather finally arrived, and there are so many things I wanted to do. On Friday, there were friends’ bands to see and restaurants to visit and people to hang out with. I stayed at home with my fatigue, aching bones, roiling bowels and chemo-induced indigestion. What I remember from the last time I took neupogen is that your skull is also bone, so I get headaches from my skull and jaw hurting.

Nothing on its own is that bad, but when it’s all going on at once, it’s enough to ground me for the night. I fell asleep on the couch a little after 9 pm while putting up photos of the one thing I was able to do— stop by the community garden to see my tulips and daffodils—up on Instagram, the phone still in my hand, jolting me awake a little when a buzz for a new comment appeared.

Yesterday morning, I headed up to the main hospital, where I was slated to receive a blood transfusion to boost my low hemoglobin. I was originally supposed to get a transfusion on Friday the 13th, an occasion that my inner goth girl enjoyed, but the hospital was too booked that day. On Friday, I got up at 6 am to do my saline infusion before work so I could possibly go out after work, but by 4 pm, I was having trouble staying awake. I had a rare free time without a needle in my port before placement the next day, and that always is a nice free feeling. I visited the community garden on my way home, a small consolation prize to enjoy the garden in the nice weather.

Either the chemo or the neulasta has been giving me night sweats, so after waking up a few times to change my drenched clothes and turn over my damp pillow, I got up early to make it to my 9 am transfusion. Some were getting a jumpstart on the first nice day in a long time, already in jogging clothes, coffees in hand. I remembered the joy of waking up early on a weekend for a workout, having the promise of a beautiful day stretched out before me. I tried to find that hopefulness, but it eluded me. Once I was called for my blood test, I waited for the results to determine if I needed the transfusion. I sat in the waiting room, remembering being wheeled by these suites as an inpatient during radiation and for tests, looking at the outpatients nibbling on graham crackers and sipping coffee, allowed to exist in the outside world.

By 10 am, I was told I didn’t need a transfusion after all, but because of weekend train construction, the usual train I would take wasn’t running downtown, and the other train I would take was running on an alternate line, so it took a few trains and buses and an hour and a half to get home. My little trip uptown zapped my energy for the day. On the last few buses, people were geared up for the day, heading to the parks and outdoor destinations, and I realized I had nowhere to go but back home to bed. I felt bitter. I passed a storefront that once sold funny items and a rubber chicken purse around my first round of chemo five years ago. It now houses a fancy relaxation store that urges passersby to rest with pricey good-smelling mixtures. It is the rest of well people, though, of companies that offer “wellness” as a brand, and for people to take breaks from their busy lives, not for people like me, who feel fatigue in their bones. It’s rest for the living, not the dying, who will have rest soon enough.

When I got home, I changed into my sleep diaper (just in case) and slept for more than an hour, then ate lunch and then spent the rest of the beautiful afternoon sleeping. By the time I woke up, there was a chill already settling in the air and by the time I put on real pants, I was too tired to walk for ice cream, so my boyfriend brought me a festive milkshake dotted with sprinkles home for me. I watched TV for a few hours hooked up to my IV before falling asleep again, getting up several times because of the nightsweats but too tired to change to dry pajamas.

Today is a gray day, and it’s been easier for me. I read a really great book by the friend of a friend, a fictional story about a little boy who dies of cancer because sometimes I just want to read about death and cancer. This weekend, I didn’t feel like I was part of the world anymore. No matter how much you can try to be optimistic or how much kindness people show or how much you or they try to cheer you up, being sick and dying is hard and it’s a lonely business. I owe people messages and emails and phone calls, but I haven’t had any energy all weekend. I haven’t even been able to make any progress on my end-of-life checklist and plans.

This weekend was one of the hard ones, as I watched people make plans, as I was too exhausted to engage with the world beyond books or TV. I’m tired of living like this, and I’m impatient to either get better or die. Sometimes the tedium of hooking up another IV or pulling more Immodium out of a blister pack seems like it’s too much to bear. This world doesn’t have much for me anymore and I long to be free. Sometimes, there’s not anything anyone can do and you just have to give in and cry and acknowledge the sadness.

Yesterday found me back in the chemo chair at the Brooklyn infusion center, and I returned today for my etoposide. The center is fairly close to me but requires two buses to get there, so getting there takes anywhere from a half hour if the bus schedules align to an hour if they don’t. I usually end up walking the second half.

Back in the chemo chair.

Before I went, I voiced my doubt to my oncologist’s nurse. “I’m starting my carboplatin and etoposide chemo today, and I have a question for the doctor,” I wrote. “I had both for my augmented ICE for the lymphoma, and when I was done with those two rounds, the pancreas tumor (which was thought to be lymphoma or inflammation at the time) was still there. Is there reason to believe it will work this time? I’m so discouraged but I know we’re running out of options.” The nurse called me back, and she told me that, as I noted, we’re running out of options, and the doctor thinks that this is worth a shot. I agree, and I know they wouldn’t try something if they didn’t think it would work.

However, my cancer just keeps surprising everyone in the worst ways. The doctors were surprised that the tumors came back this summer, they were surprised that the radiation didn’t work, they were surprised that the liver embolization didn’t ease the symptoms.

So far, the chemo seems to have aggravated my diarrhea, as the Dacarbozine did. I hope this is just temporary. Things are happening in my digestive tract, and I can’t tell if they are good or bad, or perhaps they mean nothing at all.

Today I returned for a half-hour infusion and to receive my Neulasta injector to deliver neuopgen “to help reduce the chance of infection due to a low white blood cell count.” I took it in shot form when I was harvesting my stem cells for the lymphoma stem cell transplant. It causes a bit of bone pain, but as I recall, it wasn’t that bad. Fingers crossed.

I was thinking I could use a happy surprise. I buy a lotto ticket every now and then. But honestly, I have had an avalanche of happy surprises. My bootcamp friends set up a GoFundMe (which is temporarily down since it was flagged for the words “opium tincture”) but it will cover the COBRA payment to continue my coverage while my domestic partner made a job transition, with a bit left over to put towards medications my insurance doesn’t cover.

My current insurance doesn’t cover a wig, but I’ll get one only if my new insurance covers it. I stayed bald last time, and I’m getting used to my new extremely short ‘do. I also have an asymmetrical purple wig from Ricky’s if I need some hair. If this chemo works, I’ve already decided to be Annie Lennox for Halloween.

Three of my best friends visited recently for several days. We caught up and reminisced. My Sound and Sense, a book I’ve had since AP English my senior year of high school, went to Ireland with my friend who is a teacher. In it are scribbled notes from me to her and to another friend when we shared the book, along with actual notes from explicating various poems. While they were here, a fitness bootcamp friend who now lives in Chicago dropped by, and my apartment was full of laughter and friends from different times of my life. More friends are slated for visits in the upcoming weeks—people I’ve known from Ohio who now live in Washington D.C. and in Seattle.

One of my half-birthday pals sent me a cool dragon cards, and another friend sent a care package off activities and artwork she thoughtfully put together. It seems as if one of my cats fell in love with the cat pencil case that she sent or with ’80s Howard Jones. I can’t tell, but he snuggled with all the gifts. A Chewy delivery of cat food arrived and we momentarily worried that the cats had figured out how to order from the internet, but a card the next day arrived from a friend’s mom. I’ve received such kind notes and words of encouragement through email and social media. Yesterday to raise my spirits, one of my friends wrote a series of poems about cats that she called catkus.

Tomorrow I am slated for a transfusion to boost my low hemoglobin. I had a transfusion at the hospital as well, when a friend was visiting. We are both former goth girls, so there was something very goth about sitting around with a bag of blood.

Despite battling gloom and pessimism, it’s hard to completely extinguish a little bit of hope.

I start my carboplatin and etoposide today, and then have another round tomorrow. It’s slated through July as there’s no telling when the health insurance companies will be done with their negotiations to make PRRT available.

I’m not afraid of the chemo or the low blood counts or the bone pain. It’s all old hat to me now. I’m afraid that it won’t work, because these drugs haven’t worked for my pancreas tumors before. I had carboplatin and etoposide as part of my augmented ICE before my stem cell transplant for Hodgkin’s lymphoma, and at the end of that treatment, my pancreas tumor (which was thought to be lymphoma or inflammation at the time) was still there.

Reading my old blog post and seeing the decision to skip the pancreas biopsy years ago gives me mixed feelings. I don’t think knowing that it was a neuroendocrine tumor would have done anything as far as treatment; the doctors probably would have watched and waited and I don’t think it would have affected the outcome. And ignorance was bliss. I enjoyed thinking I was cancer-free for that year and half.

There is a nagging feeling that this won’t work and that hanging my hopes on the new treatment is also foolish. I don’t know what else to do, and options are running out. I have an appointment for a consultation with Mt. Sinai in a few weeks to see if their center for carcinoid and neuroendocrine tumors has anything for me. I have been disappointed too many times to quell these doubts. At the very least, I was afforded a little bit of hope when a future without hope seems too much to bear.

Last night, I talked my boyfriend into buzzing my hair in preparation for the next round of chemo. This chemo is the kind that makes your hair fall out, and I was due for a haircut anyway. Unfortunately, the clippers gave out as we were nearing the end, and it’s a little shorter and a little more uneven than I had anticipated.

Leaving the hospital this last time was tough; I cried on the way home. Instead of the hope of getting and feeling better, I just saw more of the same stretch out before me in a neverending landscape of illness. Luckily, I had some friends in town from Dublin, Ireland; Dublin, Ohio, and Cleveland, plus a surprise visit from a former New York bootcamp friend who now lives in Chicago, and all the activity kept me happy and distracted before my Friday morning doctor appointment. Before then, I honestly thought might be the last time I might see some of my friends. However, the doctor gave me some hope with the latest plan.

I had hoped the plan would involve the new PRRT treatment, but that is being held up by negotiations with health insurance companies (of course). Since the diarrhea caused by the tumors has just cleared up a little bit, thanks to the opium tincture, I don’t have time to wait for the health insurance companies’ red tape and greed, so I am going to start on Wednesday with an older type of chemo. In fact, it’s chemo I’ve had before: carboplatin and etoposide. They will be given over about hourlong sessions for two days in a row, every three weeks, for six rounds. (That would make my last day July 26.)

I have mixed feelings about this chemo. I had it before as part of my augmented ICE treatment before my stem cell transplant for Hodgkin’s lymphoma, but it was a high-dose in-hospital treatment, along with ifosfamide. It was the “I” of ICE that had really knocked me out, so I’m somewhat hopeful that the carboplatin and etoposide won’t be that bad. I also have to take Neuopogen injections to boost my bone marrow, as I did before stem cell collection years ago, and that makes your bones ache. Otherwise, the side effects of this seem like the usual chemo side effects: nausea, some fatigue, hair loss. It’s familiar.

The doctor said I would know within the first few treatments if it were working. I’d be trading this diarrhea for the nausea, fatigue, hair loss and bone pain. It doesn’t seem like much of a trade, but count me in. The hope, of course, is that this buys me some more quality time. I’ve felt a little bit better having a plan and having a date to set my sights on. She said she would be surprised if this didn’t work, but of course, the radiation was supposed to work and the embolization was supposed to work and the Dacarbazine was supposed to work. I’m also a little worried, because I’ve had this before, and I don’t think it shrank my pancreas tumor, which was present five years ago when the doctors thought it was part of my lymphoma.

Still, it’s given me a bit of hope. In the meantime, if the PRRT becomes available, the doctors will weigh whether or not I should stay on this treatment or if I should switch to PRRT. If this treatment seems to be working, I think the plan would be for me to stick it out through July to keep the PRRT as the next step further down the line. If this chemo doesn’t work within the upcoming months, then PRRT will be the next plan. I’m focusing on smaller annoyances—my hair (or lack thereof) and chemo eating up most of my summer—to avoid the bigger questions like: What if this doesn’t work? How many treatments can I fail? 

In the interim, good thing have happened–friends have visited and set up a GoFundMe and done all sorts of nice things. I’ve been blogging less as I’ve been out in the world more. After my last visitor left yesterday, I didn’t blog since I’ve been spending too much time alone with my thoughts. I read and decided to spend time alone with other people’s thoughts instead.

Recently, people have been asking me if I would do a GoFundMe for medical bills. I have been reluctant, because I have felt strange about it, but I finally relented when some of my old fitness bootcamp pals put a GoFundMe together and after another group of friends sent me some funds and after I asked another group of friends what they thought. The answer has been that people want to help and it would make people happy, so it’s up! (I also nearly forgot that my half-birthday is around the corner. It’s something I celebrate every year somehow, just a fun non-holiday that I acknowledge with people who share my birthday.)

People have done so much already, and I don’t want to come off as if I’m asking for money. It’s there for people who want to donate, but I have received so many gifts and so much support that my heart is full. (And so is my belly, thanks to a recent candy influx.) Please don’t feel pressure. Everyone has done more than enough.

The bills are high and I’ve spent a lot over the past five years, I feel as if it won’t leave me destitute and that I will be OK. Why is bankruptcy or destitution the measurement though? I am not a fan of the healthcare corruption and that bankruptcy and crippling debt are a fairly common side effect of being sick. It shouldn’t be. We accept that prices will be inflated. We pay off medical bills for years. In exchange for fixing our broken bodies, we have broken spirits.

When I am in the hospital or at the doctor, I feel as if the meter is running: I turn down tests, argue over ambulance transportation, and question what’s really necessary, because I don’t want a big bill. I’ve skipped medications. Currently, BlueCross/BlueShield is refusing to pay for the last day of my hospital stay in January because, the company argues, I was well enough to go home. I was not. The doctors tried to prepare me to go home but switching some of my intravenous medications to oral ones so that I can exist outside the hospital. I know that if the choice came to laying down and dying on the hospital steps or crippling debt what I would choose.

Someone I know died at 28 of lymphoma; her back had been hurting her for awhile before she had it checked out because she didn’t have insurance, and the cancer was detected too late to save her. We all know stories like this, right?

What I would really like is change. I have a vision of terminally and chronically ill people descending upon healthcare lobbyists and insurance companies, shuffling forth holding our IV poles and hospital gowns closed like post-apocalyptic zombies and somehow physically dismantling the corrupt system. I think it my mind it’s the French Revolution meets The Walking Dead. I’m unsure of how to make this happen. I vote. I write letters. I’ve marched. I don’t feel like it’s enough. I’m not a leader, but when the call comes for one more broken body to fight the system, please count me in.

I also have some news on the healthcare front that I’ll put in another post. I will be starting chemo next week, as the new treatment is not available yet and we can’t afford to wait much longer to try to get the pancreatic tumors under control. Why is this treatment—that has been FDA approved and has been available in Europe—not ready? Negotiations with health insurance companies.

My blog is called A Pain in the Neck, because that’s where one of my initial lymphoma tumors manifested itself. If I had a blog about the accompanying insurance issues, I’d call it A Pain in the A**. Pardon my language. Or my asterisks. A Pain in My Asterisks.

I don’t have time to list all my issues with health insurance. Our system is broken. Most people agree, and say something should be done about it. Why do so few profit at the expense of so many? Why is this allowed? Why do people vote against their own interests?

I hope it can be fixed, though I think it’s too late for me and my abbreviated lifetime. If the new PRRT treatment is cost-prohibitive, I know I’m not going to do it. As of right now, I know the hospitals and insurance companies are in negotiations so that it will become available soon. I’m personally doubtful the new treatment will work for me, but I would like to try it since it’s one of the only things left to try for me at this point.

What price tag would you put on the dignity of not waking up in a diaper full of your own waste? My health insurance won’t cover opium tincture, one of the only things that helps my tumor-related diarrhea. I decided to pay $150 per month for the tincture as I hope it will improve my quality of life. I am getting new health insurance within a few months, so maybe it will be better or worse. I’ll probably end up paying that amount for something else.

The hospital is also in the process of trying to get my health insurance to pay for my last day in the hospital in January. The doctors had been trying to prepare me to go home by switching my medications from intravenous to oral and trying to adjust my electrolytes. According to my insurance, I didn’t need to be in the hospital the last day as they prepared me for release.

If there were a way to take all my anger about being ill and channel it into a rage that would change things, I would. The health insurance company can kiss my asterisks.

I recently read a former co-worker’s book about chronic pain, and she talks about how she will never be one of those people who is grateful for an illness. I, too, can never find it within myself to be grateful to cancer or peripheral neuropathy. I’ve found things to be thankful for and good things despite the cancer, but I will never be thankful for this disease.

My cat reluctantly models an otter hat.

However, I do still have a lot to be grateful for, and since I’ve been particularly sick for the past several months, I’ve received so many words of support, and also some notes, cards, photos, and little gifts. I don’t even have photos of all of them or room to thank everyone, though I definitely am so grateful to everyone who took a little bit of time to send me message or gift. People have made meals, delivered treats, sent gift cards, and chipped in. I have mix CDs, and flower seeds, and cards. People have given my cats toys, and, much to their chagrin and my amusement, even an otter hat for cats.

I now have a cat camera that I can use to spy on the cats from my hospital bed. It’s a Black Mirror episode in the making. The cats, as it turns out, don’t do a lot of things when we’re not around like ordering Seamless or entertaining company. We have caught Ziggy, the most vain of the cat trio, admiring himself in the mirror. He seems aware that he is cute and that everyone coos over his pink nose, and he actively seeks attention from visitors and hams it up for attention.

I’ve been really sad (though not terribly surprised) that Facebook is using our data for evil, since I’m always on social media, and I like using it to keep in touch with people.  It’s been especially helpful when I’m lonely at the hospital or stuck at home recuperating from various treatments, and I’ve heard from people I otherwise might have lost touch with.

Hearing from people from various points of my history have been a bit of a This Is Your Life, as I’ve had the chance to reflect on different time periods. I realized I’ve been, for the most part, extremely lucky in the jobs and coworkers department. Coworkers could always be counted upon for a sense of humor, whether things were good or less than ideal. I have so many inside jokes that I can’t even begin to explain why a drawing of an owl or Talbots gift card from coworkers is particularly funny. Some of my former coworkers gave me a Seamless gift card with a note about the lunchroom thief that plagued our building, just days before the viral Twitter thread about a work lunch thief. (Like the Twitter example, our lunchroom thief was more into the chilling psychological aspect, taking frozen meals and throwing them behind the refrigerator or stealing one lone California roll from a package of six.)

Some of this music is not cool at all as I had promised on the tape sleeve! Someone from high school sent me a pic of these old mixtapes I made for him.

A lot of people hated high school. I was awkward and wore all black (or confusing alterna outfits of velvet, plaid, flannel, band-tees, Doc Martens, etc.; see My So-Called Life). I had so much teen angst but luckily it was the ’90s, and it was in fashion then. Despite all my inner turmoil, I actually liked high school, and a good portion of the people I went to high school with.

The high school is often named one of the best public schools in the country and it was big enough where you could usually kind of find your niche and at least a few fellow freaks if you were a bit of an outcast. One of my favorite summers was spent hanging out in a Dunkin’ Donuts parking lot and the local Cleveland MetroParks. My main damper on the summer was my part-time job at Boston Market (where I fared much better than my friends working way more than 40 hours per week at Sea World) and having to read Grapes of Wrath for A.P. English. (I will never forgive John Steinbeck for that novel, especially after The Red Pony too.) I made some lifelong friends in that parking lot.

Being a teen is always terrible, but I really met some of my favorite people during that time. I pretended to hate everyone, but I guess I can admit to myself now that it wasn’t true. It’s been fun reminiscing about those memories: mixtapes I made, getting in trouble for playing with my hair in journalism class, sitting sideways in my desk in Algebra so I could more easily talk to my friend behind me (it is the only class when I’ve ever gotten a D grade and finally the exasperated teacher walked over one day and turned my desk around so I would face the board), making long cut-outs of notebook paper people to hand out in the hallway, passing long notes.

I can still fold an old-school note into a little square. When a friend sent me some aromatherapy oil, I remembered her handwriting from those notes. The two of us would sometimes snag someone’s notebook in Spanish or study hall and then write a note by putting one word on each page. We thought it was hilarious, but the notebook owners didn’t always agree.

One of my college friends who lives in Columbus, where I went to Ohio State, tagged me in a photo of our old apartment building, which was full of goths. (Yes: Goths.) So many of our friends lived in that building at various times, and it was a convenient less-than-10-minute walk to the dive bars and their goth or ’80s nights (and there was a different club for each night). We joked about moving back in and trying to hang out at the fancier mall/shops that cropped up after they razed the south campus’ bars that were so packed in their heydey that the police would set up barriers with ropes to keep people from spilling into the streets.

I actually didn’t like college that much, after going to a rural campus I didn’t like for six months. I transferred to Ohio State and ended up living in Columbus for a long time, but I wasn’t a huge fan of of actual college. I think it’s because I knew what I wanted to do and wished I could just get a journalism degree already. I was the first person from my family to go to college and I was always aware of the meter running on my tuition too, so I got through as quickly as possible, graduating just before I turned 21. I think maybe I didn’t have the typical college experience, but again, I made lifelong friends, and I’ve continued to make friends through those friends.

Some people I randomly reconnected with over the years: a high school friend’s pen pal, someone who did the same volunteer abroad program I did when I was 17. I’ve made new groups of friends, unexpectedly, like when I signed up for a workout bootcamp class that took place at 6:30 am in a bar/music venue. We worked out inhaling the aroma of the previous night’s spilled beer, or sometimes we worked out in a nearby park and later a makeshift space that also had theatrical productions. People had to do burpees if someone was late, and other people in the class would groan as my tardy figure approached in the distance. Sometimes classes ended with plank stories, when we would hold a plank while each person delivered a line of a story we’d created, and sometimes, we’d get together for something called Bad Decision Mondays that involved drinks and no working out. 

A mix CD a friend made for me, with no Ugly Kid Joe in sight!

Though I have mentioned I have tried to seize every well moment over the past several years, the truth is that I have always been a little paranoid about good things being suddenly taken away from me or that happy times will end. (Maybe it relates back to my longtime obsession with mortality.) I don’t know much about Buddhism aside from the dharma talks at the beginning of yoga classes, but over the years, something that I’ve heard before yoga is about the belief that suffering is caused by the impermanent nature of things. I know I’m not interpreting this the correct way, but that’s resonated with me since I’m often so focused on the impermanence of things.

When my family would go on vacation when I was a child, for example, during the following weeks I would torment myself about the previous week’s fun. A week ago today, I was at the beach. A week ago today, I was doing this. Etc. You can imagine how I am in breakups or other big life changes, always thinking back to better times. Four years ago on Easter, I was at the hospital for my stem cell transplant, and I was so hopeful cancer would be in the past for me. I’m not as bad as I once was, fortunately.

There’s a lot of talk about living in the moment, but when things are good, I sometimes try to grasp at them desperately as the moment slips away. I know it’s inevitable that the time will pass. There are times when I’m completely happy and content but then prematurely a little sad and depressed knowing that this goodness will come to and end. I used to suffer from terrible Sunday night blahs.

Of course, nothing lasts, not happiness, not sadness in this temporary existence. Things in my life were good again, then bad, just OK, great, fine, meh, really good, etc. Sometimes I worry I’ve run out of goodness and all that’s left is suffering. Yet I know that cannot be true when so many people have made me smile so much over the past few months and over this lifetime.

I’ve been trying (and often failing) to come to grips with a “new normal” as these tumors take over. Sometimes, I pretend as if I was given a choice: I could have 35 good years followed by five good years with illness, instead of a longer life with less joy. I would have chosen this, and it helps.