A Pain in the Neck: Coming Full Circle

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The irony isn’t lost on me.

 

The Return of the Kraken

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

It wasn’t my umbrella.

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

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

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

There it was, in coat check.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It was exactly what I needed to hear.

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

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

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

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

Faith

Years after arriving from Hungary, my great-grandfather had a job burying victims of the 1918 Spanish influenza outbreak. According to family lore, he never got sick because he had stuffed his pockets with mothballs.

When I was in grade school, my mom put mothballs into my coat pockets to ward off illness. I don’t think I got the flu, but I did get the common cold, as well as a lot of questions from other kids about why I smelled like mothballs.

I don’t think I ever discovered a reason why my great-grandpa never got sick. My personal theory is that if you smell like mothballs, people might keep their distance. Mainly, I think you need to have faith in something for it to work. I regularly take those dissolving vitamins concoctions like Airborne to ward off colds when I feel them coming on. I worry that if I stop believing in them, they won’t work.

I’ve been thinking a lot about faith, and lack thereof. I started feeling sick again in late December. The disease is progressing, and the last treatment of PRRT is being put off indefinitely. (At last count, my white blood cells were finally up but my platelets are still down. My marrow is no longer a rich environment, but closer to a wasteland, from what I understand, and the doctors want to keep it from turning into a full-blown Chernobyl.) Though the disease is progressing, the doctors seem optimistic they can keep it controlled for a bit. I am being bought little increments of quality time.

Naturally, I’ve been wondering how much time I have left and how much of that is worth living. Some people, like me, are wary of getting any more possessions or making too many plans, because I won’t be around to enjoy them.

Other people, however, firmly believe they’re going to get better. They think if they can hang on, they can be around for a cure. I wish I could have that kind of faith.

I often have difficulty having faith in anything. It seems as if, in order for things to work, you have to have faith in them.

In June, shortly after my first PRRT treatment, I went to a “Hypnotism to Improve Your Mood” workshop at Gilda’s Club, the non-profit for cancer patients and survivors started in memory of late comedian Gilda Radner. I’m a cynic and didn’t expect anything to happen, but felt desperate. It was shortly after the breakup and my heart was leaden. I had been going over what I could have done to make things different and how I had ended up alone despite everything I had compromised to prevent it. The same refrain of abandonment was on repeat.

I entered the Gilda’s Club outpost in Brooklyn and sat down at a table of about 10 women. The room smelled strongly of another attendee’s lunch, a strong mixture of canned soup and vinegar. I closed my eyes and accepted the hypnotist’s suggestions: to let go of things that didn’t serve me, to feel better.

To my surprise, I felt better. The heaviness lifted.

Friends asked if it was like Eternal Sunshine of the Spotless Mind; like most movies, I haven’t seen it. But I stopped obsessing. I let things go. I often replay cringeworthy moments over and over again. I dwell. I feel myself circling a drain of depression that I can’t escape. With just one visit, I stopped. It helped not only with the breakup, but with other aspects of my life. I’m easily wounded and dwell, and since then I’ve been able to let things go much more easily. Not always, but I would say it changed my life.

I attend about once a month, when Gilda’s Club offers the workshops. The hypnotist says it’s not him doing something; he makes suggestions that we follow. For example, he says to imagine he’s put a brick in one of your hands, a helium balloon in the other. The brick hand will lower, the balloon hand will rise.

Some people believe that, with enough faith, you can improve your health. I looked up several of the names bandied about. Dr. John Sarno, who died in 2017, was a sought-after physician for back pain at NYU Langone, though it also seems he was equally dismissed. He believed a lot of chronic ailments was caused by psychological anxieties. (Someone said deep-seated anger could help cancer grow, and I certainly had a lot of that over the past decade.) There’s Bruce Lipton, a molecular biologist who speaks of the importance of the mind-body connection. I would take this all with a grain of salt, as well as with doses of conventional medicine.

Is there anything to willing yourself better? I read an article this summer by Jo Marchant, author of Cure: A Journey Into the Science of Mind Over Body, and it seems as if the mind can at least help you feel better.

My mom believes I’ll get better. She keeps telling me to have faith. In September, I traveled to Europe with a friend and we met my mom in Paris, then we traveled to Lourdes, France. At the foot of the Pyrenees Mountains, Lourdes was a small town in France until the mid-1800s, when the Virgin Mary appeared in a grotto to St. Bernadette Soubirous. Today, about 5 million people visit Lourdes per year, mostly to visit the shrine and gather water from the spring, which has been said to have cured many people. I went there in high school with my mom and grandma, but we didn’t do the baths, as none of us needed the curative properties.

This time, we waited in line, organized by volunteers wearing name tags of their home countries and the languages they speak. (According to one of my neighbors, a member of the church across the road goes every year for a month, and many of the volunteers are those who have been cured.) The baths are divided between men and women. We waited on benches until we were ushered into one of the baths, each with its own changing room and a flurry of women helping to dress and undress those going into and coming out of the baths. Years of Catholic school has made me weirdly modest in women’s locker rooms, always covered, but years of gym locker rooms has made me pretty brazen in terms of pilgrimage sites; one of my volunteers who held up a big towel around me while I dressed was told to cover me back up after I told her I was OK putting on my tights by myself.

Once you’re undressed, they put a sheet around you and when it’s your turn, you’re led to a cement tub filled with cold spring water. Women on either side of me said a prayer and then they led me in, and to my surprise, I also sat down and they held me under my arms and swished me around a bit. Then they send you to get dressed. “We’ll pray for you,” said one of the women, and it almost made me cry. For some reason, the kindness of strangers makes me cry more. I’m not sure why, but part of me feels that I don’t deserve it. I think because when people close to me have hurt me, I wonder if it’s because they know me better and are treating me the way I deserve; maybe I don’t deserve the kindness from strangers.

It’s hard to believe, looking out at the sea of people gathered for services and the lines for the grotto that I would be among those cured when so many have faith and seem to deserve it. As we marched in the candlelit rosary procession, I was touched by the beauty but also couldn’t help but feel hopeless sometimes as so many hope to be healed.

My cynicism isn’t always bad. Sometimes people remind me that doctors don’t know for sure what’s going to happen, and that’s true, and they don’t profess to know everything. I’m wary of people who say they do know, particularly for a price. I’ll go to a $5 palm reader at Coney Island for fun, but I’m not setting store by something bigger, no matter how comforting that might be.

I’m still plagued with doubt. I’m looking out uneasily into the horizon, waiting for the storm of illness. How can I trust myself again? Is it too late to find faith in myself, at least? How do I find faith and meaning?

While recently in Trinidad de Cuba, my friends and I came across a gallery with art that made us stop in our tracks. The artist, Yuniesky Fernandez Frias, is a fisherman and most of the paintings, created on pieces of old boats, depict a bearded fisherman in a wide-brimmed hat. A word at the top of each painting outlines a concept, illustrated by the fisherman in his boat below. One that struck me was called “Duda” (“Doubt.”) The artist explained that he was thinking what happens when we doubt ourselves. The fisherman in his boat is upside-down in the water, with fish floating by; his line is cast upward to the sky, fishing for birds.

Since the day I tuned into the cat cam, I felt as if my world was turned upside-down. When everything shifted, I was left gasping for air, and it took awhile, but I realized it was air I was finally breathing in. I had been in the water, fishing for birds.

Now, and until my time is up, however soon that might be, I’m grateful for every breath.

A few months ago, I quoted Albert Camus, “Autumn is a second spring when every leaf is a flower.” I was surprised that the quote was his, but a friend found a short video tutorial about him, and I was reminded that he was the most fun-loving of the existential philosophers. I can’t imagine it’s something that is hard to achieve, but it’s probably why he’s one of my favorites. Like his peers, he maintained that life was absurd and pointless, but that one didn’t have to necessarily despair and could find some sort of happiness. In his 1942 essay, The Myth of Sisyphus, Camus compares our lives to that of Sisyphus, the Greek mythological character condemned to forever roll a boulder up a mountain and watch it immediately fall to the bottom again. Instead of despair, the absurdity of life requires acceptance. “One must imagine Sisyphus happy,” Camus says.

I thought of this quote as I spent an entire December weekend doing laundry. A moth had fluttered out of a sweater my ex had left behind, and I decided I was going to wash everything and finally reorganize my closet. We had moths a few years ago and had washed everything, but they’re particularly hard to get rid of because they can lay eggs in your wool clothes. I was tired of seeing the occasional rogue moth. So I spent an entire weekend rolling my laundry to and from the laundromat, in what seemed like a never-ending modern-day Sisyphean task. I hate doing laundry and could not imagine myself or Sisyphus happy and was eager to no longer think of moths and existential dilemmas.

I took a break Saturday night and went to a friend’s birthday party and had a weird extra bit of time when I went to the store and bought a new rolling laundry basket to replace my broken ones. I also got a few closet moth cakes. I thought they would smell better, but they are really just giant moth balls, as it turns out.

Now, as a testament to the power of faith, my apartment always smells vaguely of moth balls.

PRRT, Part 3

A lot of people have asked me how I am feeling the past few days. I feel outraged by most of the news. I feel concerned about the upcoming midterm elections. I feel hopeful that I’ll win the Mega Millions jackpot. I feel excited to have friends in town soon for my birthday party. I feel happy that I had two great vacations back-to-back.

People are asking about my health, though. I had my third PRRT treatment yesterday, and now I’m back to feeling pretty good. This afternoon was a rare time of feeling bad. I feel fatigued. My stomach and bowels feel a little weird. I made a long list of things I wanted to do today, when I’m stuck at home and radioactive, and I spent my afternoon curled up on my bathroom floor.

While on the floor, I had time to reflect on how much more fun my other recent Saturdays have been. Last Saturday, I was in Bermuda, on pink-sand beach, basking in the sun. The Saturday before that, my mom was in town, and we took a tour of my neighborhood that included Key lime pie, a stop at the local winery, barbecue, and ice cream. (Plus a bonus trip to Marshall’s for comfortable shoes. Though we received condescending service from my once-favorite local restaurant, it couldn’t mar the fun week we had together.) The Saturday before that, I was in Paris with my mom and a friend, popping into museums and churches, and attending an opera at Palais Garnier in my wig and a new dress I bought in five minutes at the train station. The Saturday before that, my friend and I had spent the morning at the Rijksmuseum in Amsterdam then angered a shuttle bus driver and boarded a plane for Copenhagen, where we met up with a good friend I hadn’t seen in a long time. He made us dinner and we went to Octoberfest, where we watched drunken Danish people dressed as Germans drink large steins of beer and sing “Time of My Life.” The Saturday before that was my 10-year New York City anniversary and my cat’s birthday, and I started the day out soaking up the last of my free week trial at a fancy gym, taking a treadmill/strength class, then sitting in a sauna infused with essential oils, followed by a dip in the mineral pool. Then I met up with friends in town and we ate pizza and then took the ferry to my neighborhood for that Key lime pie and view of the Statue of Liberty before heading to a local bakery for a treat to put my cat’s birthday candle in. At my apartment, my second set of friends in town briefly overlapped for a rendition of “Happy Birthday” to the cat. (He received treats and a David Bowie shirt that he appeased us by briefly wearing for photos, proving himself to be a very patient creature who will do anything to ham it up for attention.) Then we went to a bar with a bunch of wax figurines and ate some paella at a food court and ran into some other friends and then we played Chutes and Ladders at a place in my neighborhood that I went to a decade earlier after I spent the day looking at apartments.

In fact, sometimes I forget I’m sick. I was surprised to come back from Bermuda and have a bloodwork appointment on Tuesday in preparation for Thursday’s treatment. I tried to cram as much fun as I could before this weekend of relaxation and radioactivity. On Tuesday night, I went to see some bands and then on Wednesday night I saw David Bowie’s Lodger performed (for free!) in a mall near my workplace.

I prepared my things for Thursday, setting aside my laptop and my clothes and workout clothes. I decided to go to an early workout since I will be radioactive and can’t be sweaty around people for about a week. I was worried I wouldn’t make it to the class (the trains!) but I made it and was feeling good about my decisions until I showered and realized that the rest of my clothes were still on my bed at home. I put my workout clothes back on and went to the hospital for treatment.

By now, I know the drill, so I was given graham crackers and put on my pre-medications through my accessed Mediport. The IV took a bit to put in, as my veins are all used up. When my veins were finally cooperative, I had the treatment again. I wasn’t quite as sleepy as before so I was able to talk to the doctors a bit.

Initially, I was slated to have a half-dose again, like last time. My platelets and hemoglobin dropped after the first full treatment, and remained steady after the second treatment. However, this time it was agreed that I could have the full dose for the PRRT benefits. I think if my blood counts are still off, I might get a transfusion. (I’ve had them before. It’s Halloween! Let’s get the vampire stuff going, I say.)

As before, I’m radioactive. I maximize my distance for others for a few days. No eating or drinking off the same plates for six days. I have to wash my clothes separately for six days. No gym for six days. (Though I managed an ab workout at home under the skeptical eyes of a tabby cat.)

I’m not supposed to hold infants for longer than 30 minutes per day for about 10 days, something that isn’t a problem. “What about the cats?” I asked last time. They are small. I’m told their lifespans aren’t long enough to worry about effects. But they’re young. I worry.

“Some people treat their pets like children,” the radiation officer said to me when I asked again this time. I just nodded. We ended up talking about Halloween and when I told her that I had dressed as Little Red Riding Hood and one cat was the woodsman, one was the wolf and one was the grandmother, I feel like maybe she got a better sense of my relationship with my cats. I have tried to keep my distance. I put a stepladder and handweights against the door of the bedroom, but they pushed it open. Last night, I put my nightstand against the door and I awoke to the smallest cat mewling in my face for breakfast. I think the radiation is turning them into super-strong mutant cats. Tonight I will try something larger as a barrier.

After I started to feel better today, I put on pants that I’d worn over my hot yoga (hot yoga, something I thought I’d never do again) clothes on Monday and went to the drugstore.

Today was a reminder: I have cancer.

It feels so good to forget sometimes though. There are reminders: the surgery scars, the Mediport in my chest, the bouts of fatigue or digestive issues, the bruises that seem to appear from nowhere, the hair loss.

Having my life back, even for a short time, has been so good. In four short months, I feel so different from the woman I was when I first received the treatment.

The doctors estimated about a year from the outset of treatment. I’m one-third through that. Tick-tock goes the invisible clock. As with anything, even time that feels stolen isn’t enough. It’s not the loss of time that scares me; it’s the taste of the inevitable end that haunts my thoughts sometimes.

Do we ever have enough time? There’s so much more I want to do. That feels better at least, than the deeply sad resignation I had earlier this year.

In reading that item from July, however, as I plan to buy some Mega Millions tickets, I realize I also haven’t given up on winning the lottery.

Mariah Carey

“You’re fine,” declared one of my friends shortly after arriving in town last weekend, as he sat down for Korean food with me his wife, who had arrived days earlier. “You’re happy and free now. You’re like Mariah Carey after divorcing Tommy Mottola.”

I love a good pop culture reference, and I enjoyed this analogy so much, I almost choked on my bibimbap. For those not as familiar with pop culture and celebrity marriages: When she was a young up-and-coming singer of 19, Carey met Mottola, who was then head of Sony music. They got married in 1993, but after their divorce in 1997, her videos got a lot more fun and she seemed noticeably happier. (On a sadder and more serious note, it turns out that she revealed he was emotionally abusive and controlling so it’s no wonder she seemed so free afterwards.)

But back to my analogy of the more lighthearted aspects. Earlier this week, I found myself specifying which Mariah Carey I would like to be. It is obviously Mariah in the 1997 “Honey” video, riding around on a jet ski with a team of sailor backup dancers. I guess Nick Cannon-era Mariah was OK, but I don’t want to be “MTV Cribs” Mariah or the Mariah going through an acrimonious billionaire breakup, though I wouldn’t mind having a 35-carat ring to sell. It goes without saying I don’t want to be angry New Year’s Eve 2016 Mariah.

It seems like it took a long time to get to this place yet it’s also been a short time. It’s been less than two months since the big breakup. I’m still discovering things that he took with him, like the can opener when I was about to make myself dinner the other day. (Is it cruel or an act of mercy to take the can opener if you know someone eats cold things directly out of cans?) I’m told by divorced friends that these discoveries will go on for years. (On the bright side, it would be nice for me to have years to discover missing things.)

It’s better to be 1997 Mariah than the “Used to Love You” Gwen Stefani of a few weeks ago. (During a late-night music video-watching session last weekend, we figured out what was wrong with the video and I explained my longstanding complicated feelings about her. Update: This Buzzfeed article touches upon many of the reasons for my complicated feelings.) Yet Stefani raising her middle fingers to the camera is better than I was weeks before that. Then I was grappling with anger like Mary-Louise Parker in her “Dear Mr. Cabdriver” essay in Dear Mr. You. I was Jennifer Aniston screaming at the ocean.

Some people make references to great literature or poetry, but my references are mostly pop culture. There was a time, I think, when I would be made to feel like I’m stupid or inferior for that. I don’t. I don’t feel apologetic about much these days.

And yet… I do. Of course I do, because I’m me. I’m sensitive and socially awkward and so there’s a part of me that always worries if I’m being a weirdo or making other people uncomfortable.

I did bloodwork this week and was actually relieved to discover my hemoglobin was low. That explains why sometimes I feel a little short of breath. I’m back to doing yoga and I even felt up to water cycling this week, but there are moments when I suddenly feel diminished, like someone suddenly stuck a pin in me and I’m deflating.

Sometimes I’ll be trying to have a normal conversation with someone and I wonder if they can tell how off I feel. Though I’m used to that feeling from when I had panic disorder. I think I’m good at faking I’m OK, but I also register every degree of emotion on my face, so I can’t tell. I usually just smile wider than usual and try to get through it.

I feel oddly apologetic sometimes when I’m not getting better physically or emotionally. People want me to be happy. I worry that people feel sorry for me and that I’m pathetic somehow.

I’ve been keeping myself busy yet worrying about what is it within myself that I’m trying to avoid.

On the other hand, I haven’t been single in 12 years and I forgot how much I enjoy it. I’m not a relationship person. Yet I also shouldn’t be left to my own devices. If I am, I stay up too late and mess up my sleep patterns. I have a chocolate-covered key lime pie for dinner. I ate veggie crumble tacos for all my meals yesterday, with a side of tortilla chips that were just the dregs of the bag, so I melted cheese on top to make them stick together. I figure I have maybe another month to pull it together and be an adult. (I also still thankfully have some meal train meals to unfreeze and a Seamless gift card. It’s still relying on others for food, but I hope to develop better habits.)

Though my ex didn’t take much in the way of furniture, I have been rearranging the apartment and have become obsessed with cheap and free furniture from the NextDoor neighborhood classifieds and Facebook buy-nothing groups. (People in New York in particular don’t keep things around their apartments because of lack of space.) I have two TV stands, one of which is now serving as a side table. I fixed the pull for the other TV stand and forgot how empowering it is to use a drill, even if my work is a little imprecise.

I’m not buying new things because 1) I’m cheap, 2) I love free things, and 3) It seems silly, given my life’s abbreviated timeline. Yet I’m eager to make a fresh start with my apartment and move things around and make the space my own.

I recently found a listing for a free queen bed frame in my neighborhood; the only cost would be finding last-minute movers. It’s now the nicest thing in my apartment and everything else looks shoddy. I feel like I should put my bargain KitchenAid mixer (also from NextDoor) on the nightstand to display all my nice things together.

It’s just a bedframe but it feels like a fresh start. Before I went to the apartment to meet the previous owner of the bedframe, however, I had to meet someone else a few streets over for some cheap purchases. I found myself wheeling a side table atop a rolling kitchen cart with a food processor in its basket down the uneven sidewalks of my Brooklyn neighborhood. It went pretty smoothly, considering, and I lost my food processor only twice and have some big shin bruises to match my arm bruises from my overly ambitious moving of items. Then a TaskRabbit came over to finish assembling the Hemnes daybed (the only thing I purchased new and couldn’t drag off the street) that my friend started on last weekend but didn’t have time to complete. Though we did watch some metal videos during the assembly as I recounted some of my favorite hair metal facts and memories, and that was extremely fun.

In fact, I’ve been having a lot of fun lately. More fun than I’ve had in years. I seen so many people town: a friend I met in a Dunkin’ Donuts parking lot when I was 16 and his wife, both of whom were in town from D.C. and who I also knew when I lived in Columbus; someone in from California who I know from Columbus through countless people; my mom’s cousin’s son who stopped off in NYC with his girlfriend as they hike the entire Appalachian trail, and a friend who I sat near 20 years ago in anthropology class with his wife, who I also know from when they lived in NYC, and their two new additions within the past four years.

I took a few days off the Fourth of July weekend. My friends in town from D.C. have been calling this the Summer of Josie based on the Seinfeld “Summer of George” episode, when George Costanza declares it the “Summer of George” but just ends up eating a lot of cheese in his apartment and falls down the steps. I’ve already fallen down the subway steps last month and I’ve eaten a lot of cheese. But the weekend included: fireworks, vegetarian Asian food, Coney Island, fried Oreos,  the Continental, the Wonder Wheel, watching someone throw up on the train into his backpack, a David Bowie tribute performance, the Russian Tea Room, eating on a waterside barge, seeing a friend’s performance at an art gallery, and lots of pizza. We also did a transcendental meditation intro talk. I’m not sure if it’s for me, but I’ve heard such good things about it.

Now I’m working on a freelance story and continuing to put my apartment together. I still feel like I need to do as much as possible as quickly as possible. As I try to plan for the future, I know I don’t have much time left. My symptoms have been clearing up and I’m often able to lock out the thoughts of my illness and when it will return in full force, but it scratches at the door, insistent. It wants attention. When I’m not distracting myself, it reminds me that it’s coming for me. Mostly because my hair is falling out a lot. The thought that I will never have a full head of hair again before my time is up bothers me for some reason now in a way it never did before. It really depresses me that I’ll be so bald so soon. On days when it doesn’t bother me as much, I’m still annoyed that I won’t be able to be Annie Lennox for Halloween, as I’d planned. Instead I’ll have to be Ripley or someone balder.

However, this week I was also reminded that my wishing powers are still working. I’ve noted before that I sometimes wish for random things, then they manifest themselves. (These items include: an ice cream sundae, a tray of yogurts, a blow dryer, shoes, a lightweight jacket and stick of deodorant. They are gifts from the universe.) I had just been looking at the blinds in my living room, broken in some spots. I wondered if I should bother buying new blinds.

When I walked outside, a few doors down, there were some things up for grabs. Including a box of blinds that probably fit my window.

Over the past few weeks, I’ve been remembering the person I used to be years ago and reconciling her with the person I’ve had to become with cancer and with the person I want to be. Until then, I’m sometimes 1997 Mariah Carey.

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.)

 

PRRT

I’m radioactive. I actually have to keep people at arm’s length for five days so I have to be somewhat isolated. It’s a weird time to do so when I’ve been asking for more support than ever.

As a mosquito flew by my face Wednesday evening, I wondered if it bites me while I’m radioactive, if it would die or turn into a superhero mutant. Half-asleep, I wondered if I should phone the on-call oncologist. I learned yesterday that I was the first non-clinical trial patient at Memorial Sloan-Kettering Cancer Center to receive the Peptide Receptor Radionuclide Therapy (PRRT) treatment. If I did call, would they would just stop offering this treatment in the U.S. immediately? That’s it: We can’t have nice (neuroendocrine-tumor-blasting) things.

From my understanding, the cancer cells have receptors for peptides, and this is how octreotide, a synthetic hormone I already inject three times per day, works to combat (somewhat) the diarrhea-inducing hormones produced by my rare VIPoma tumors. The PRRT works by combining the octreotide with some radioactive material. The tumor welcomes the octreotide, which acts as a Trojan horse, escorting the radioactive peptide into the cells and treating the tumors from the inside. The destruction of some of the cancer cells may cause even more release of the hormones that are causing the diarrhea and other side effects, so it’s likely I may feel even worse for a five to seven days, as I did after the chemo. (Hopefully this doesn’t mean any blood infections. Twice earlier, the increased symptoms have caused klebsiella bacteria to sneak from my gut into my bloodstream, especially because of the rerouting of my digestive system after the Whipple procedure.)

This won’t cure my cancer and it might not even shrink the tumors, but it’s aimed at controlling these symptoms so I can have at least maybe six months of normalcy. I’ve also been feeling a little bit better after the two rounds of chemo I had.

Wednesday morning, I went to MSKCC’s Nuclear Medicine department for my first round of PRRT (Lutathera). I spoke with the doctor and had everything explained to me once more, including the short-term and long-term side effects. Treatment is once every two months and I am slated for four courses of treatments. I also will do bloodwork every two weeks. (Also, some good news from last Friday’s bone marrow biopsy showed no myelodysplastic syndrome, something that I am more at risk for after all my chemo and previous treatments.) If the bloodwork doesn’t look good enough, there’s a chance the treatments may be rescheduled.

In addition to the half hour of Lutathera, I also received anti-nausea medication, as well as four hours of amino acids to insulate and protect my kidneys from the radioactivity, as well as Decadron for a boost. One of the lumens in my PICC line was blocked, so I was unable to do my hydration in the morning, so I also received some fluids.

Since I am the first patient at MSKCC to receive the PRRT as not part of the clinical trial, a few other doctors were there to observe, including a doctor from the Treatment Center Rotterdam, where this treatment was developed.

As much as I wanted to stay awake for my first round, I kept falling asleep during treatment. I was physically and emotionally exhausted. I have been too upset to get a good night’s sleep most nights, but this week, I also had an old friend in town and we stayed up late talking one night, so it was nice to have a happy reason for sleeplessness.

The good news is that amid my infusions, I was taken for a scan, which showed good uptake in the pancreas of the Lutathera. I hope this means that the treatment is effective and I can buy some months of normalcy in my life. After the break from chemo, I have had some physical normalcy and strength return.

Emotionally for the past three to four weeks, I have good days and bad days. Wednesday was a bad day. I felt like battles and wars were being waged in my body and my mind, and I was just so tired. I fell asleep while nurses spoke to me.

When they asked if I have anyone at home, I broke down in sobs. If I could magically stop being so sad, I would. On Friday, I cried so hard at my bone marrow biopsy appointment, I got a hug from a stranger and another from the nurse who took my blood. When the nurse practitioner for my lymphoma doctor asked me how I was, I started crying and got a third hug.

I’m not supposed to sleep next to anyone for the next five days, so it is perfect timing. After 12 years, my boyfriend and I broke up. I have all the breakup emotions: I’m sad. I’m angry. I’ve been asked to not be so public about our split, so I’ve been trying to straddle the line between asking for necessary help with both practical support (doctors’ appointments, places to stay) and emotional support. When it comes to emotions, I overshare. I have this blog in which I overshare regularly. I’m trying to respectfully share only my own stuff and not those of other parties. Things are complicated.

I am not a woman of calm dignity. I wish I were. This is who I am: I am messy and emotional. I am going to cry every day for months. Since I try to hold things in, I cry in front of strangers in public instead.

I can’t do a lot of the post-breakup stuff. I’m balder and even more funny-looking than usual. I can’t work out. Khloe Kardashian is not going to contact me about a revenge body. I just want a body that doesn’t have constant diarrhea. (And that looks like it is happening! I mourn my loss of core strength but every night without a diaper is a sweet victory.)

I can’t drown my sorrows and indulge in other self-destructive behaviors, although that is probably a good thing. However, recovering and being somewhat isolated allows me so much time to sit around and feel sorry for myself and cry radioactive tears. I have to specially quarantine and throw away wads of tissues. I suppose that’s incentive to pull it together right there.

So. I’m 40 and I have cancer and I thought I’d be facing the the last year (or years) of my life alone. This is something that happens to other people. But I’m not alone, not at all. So many people have reached out and have banded together and filled my life with so much love lately. I just need to get through this.

Breakups take so long to get over though, especially for me. When I went through a friend break-up years ago, I cried every day for almost a year.

I don’t have the luxury of time, though. I have this six months of treatment and then I have maybe about six months of feeling well. As soon as I am OK from this, I think then I’m scheduled to die or get sick again. This isn’t a normal situation. Sitting around being sad isn’t an option.

Instead of thinking about how long I’ll be sad and when and if I’ll stop hurting so much, I need to focus on all the positives I still have.

I try to remember what I learned from previous breakups: Don’t let this ruin things. I’ve had really good things happen during post-breakup times and there’s always a cloud of pain and gloom that surrounds them. Actually, looking back, I think I mostly ruined things for other people with my long face and constant babbling about my broken heart. Ugh. I completed my third (and final) bucket list item of going to Roosevelt Island—by ferry, by train, and by tram. I watched Dark Water that evening with a view of the island in the background.

Some people disappear from social media during breakups but not me. I’m on social media all the time: What is going on? What is everyone doing? Anyone want to hang out? Does everyone want to hear about the boring minutiae of my life? No? Too bad.

In the meantime, even while I badger everyone into hanging out with me, I can assert my independence. Redecorate the apartment when I have the energy. The doctors keep talking about sending me home with things, and I feel like I don’t have a home. Not my own, not quite yet.

I can’t be left alone with my thoughts for too long. I used to be somewhat obsessed with working out, but in this dried out, ill husk I am left with, I need a new hobby. I am signing up for meditation. I am going to all sorts of support groups, like Helena Bonham Carter in Fight Club, though I am probably more of an Edward Norton. The difference is these groups are relevant to me: metastatic cancer groups, young people with cancer (though I just aged out in October).

I am raw and emotional. Low-res memes with trite sayings currently speak to me more than they should. I need to do things to keep my mind occupied. I was raised Catholic; I could join a nunnery. I like wearing black and I would have a head covering. I have a shorn head; I could be a Buddhist nun. I am susceptible to suggestion and I don’t want to think about things. I would join a mild cult, but only if  matching outfits/robes/tunics were mandatory and it didn’t involve fasting. If you have wanted to suggest something to me, now is the time to do it. 

Though I have to keep people at arm’s length, animals are OK to snuggle with so my cats and my friends’ dogs are safe.

Some aspects of independence are less appealing. I have to wash my own clothes I wear for the next 10 days myself. This may be the worst part as one of my greatest joys of living in New York City is the ability to send my clothes out to a laundromat and have them returned to me washed and folded.

With all this radioactivity, I’m hoping for superpowers. The first one I’d like is the ability to get over breakups immediately. I want to become a better person, not a bitter person. I want to actually be a good person. Sometimes that seems like that would take superhuman strength.

I want to be able to move forward and look forward to the rest of my life as a time of peace, surrounded by people I love. I have to make every day count. I worry I am going to actually become a generator of low-res meme sentiments. Some days I’m like Kelly Clarkson in the “Since U Been Gone” video and other times I’m more like mid-aughts Britney. I’m like Mary-Louise Parker in her “Dear Mr. You” essay but less angry and more sad.

Mostly I’m me. Or I’m becoming me again.

Sometimes I don’t know how to move forward. If you have been through something difficult, how have you done it? This seems like the hardest place I’ve ever been in my entire life. Even full of radioactivity and the residual intravenous steroids, I worry I won’t have the strength that I need.

This isn’t an ending. It’s a new beginning. (Low-res meme coming soon.)

In the immediate future, I think I am taking it easy this weekend and seeing if the VIPoma makes me sleepy and tired.

Mediport, PRRT?

On Monday, I had a Mediport put in. I was supposed to get one about four years ago, when I was doing Brentuximab after the ABVD chemo didn’t get rid of all the Hodgkin’s lymphoma, but I thought I’d have only a few more months of chemo at the time. Now that it looks as if I’m going to be getting chemo and intravenous fluids indefinitely, I need something a little more permanent than a PICC line. This should make things easier. My veins are pretty beat up. Whenever I need an IV these days, it ends up being a small needle in my hand.

The port placement was an outpatient procedure, and I rested the remainder of the day. Since they didn’t really think about how I use my PICC line every day for fluids, they left the PICC line in too. I’ll probably get that out next week, when I go in for chemo. I’ll need to learn how to do an IV through my port.

No lifting more than 10 pounds for five days. After that, I am supposed to be able to resume normal activities, though I can’t play contact sports probably ever again. Since the last time I played contact sports of any time were miserable days of gym class in 9th grade, I can probably live with this. I do miss working out, but with my energy levels and sickness, that might be a long way off, if ever.

It’s been a disappointing several weeks, with the tumor-related side effects coming back with a vengeance after my first chemo treatment. I’m now giving myself three shots of short-acting octreotide (Sandostatin) every day, in addition to the long-acting shots that I get every month. After some desperate Googling, I had hoped one drug might work for the side effects, but it turns out that my tumors make VIPoma, not seratonin of carcinoid syndrome, so that treatment wouldn’t work. VIPoma is rare, and happens in 1 in 10 million cases per year.

I read that and bought a lottery ticket. I didn’t win.

The tincture of opium isn’t approved by my health insurance, but I’m not sure that it would help anyway. No one has officially said this, but it seems like the options are running out. The octreotide was the first step, and the doctors really thought the radiation would work. Now that the chemo isn’t working, I think things are looking grim. It’s a rare cancer without a lot of treatment options—and I’ve already done the surgery, ablation and radiation. Though the only tumors showing up on the scan are in the pancreas, they are inoperable, but the thought is that there is microscopic disease that is also producing VIPoma, which is making me so sick.

My last hope is PRRT (Peptide Receptor Radionuclide Therapy), which goes by Lutathera and was just approved by the FDA in January. Radiopeptides are delivered to the NET cells, which are hopefully killed and shrink the tumors. Both Mount Sinai and Memorial Sloan-Kettering are supposed to have this treatment available in April. I’m hoping my health insurance covers this, because it would be only four treatments as opposed to the Dacarbazine, which I would get every three months forever. Also, I think the Dacarbazine is what is worsening my symptoms, and this reminds me of last year, when the chemo would make me sick for a week and ultimately did nothing to stop the growth of the tumors. From what I’ve read, Lutathera could stop or shrink the tumors and buy me a few more years, but mainly I’m concerned about quality of life. I’m a little concerned since the octreotide hasn’t worked very well, that the Lutathera won’t work.

If the Lutathera doesn’t work, then…well, I think that’s it. The effects of the VIPoma haven’t been able to be controlled. I still do daily IV fluids for three to four hours and take a lot of supplements and give myself those three shots a day, but eventually, the dehydration and electrolyte imbalance take a toll on your heart. Sometimes you more or less starve to death or your liver fails or you might have some kind of attack.

I’m OK with letting go. I’m tired of the IVs and the procedures and the shots and wearing diapers and the feeling that something is always hurting all the time. As Leonard Cohen said, “I am ready to die. I hope it’s not too uncomfortable.” I’m aware it’s only been five years, and people live through many more challenges than this. Maybe I’m just tired.

Even though it was tough, I find myself looking back fondly on my recoveries after the stem cell transplant and after the Whipple procedure and after last year’s liver ablation. I think it’s because I had hope. I wonder if I’ll look back at this time with nostalgia, as a time when I hoped that this one thing would buy me some more quality time.