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.

Highs and Lows

Today was hard. I’m not sure why. In general, I’ve been feeling a lot better physically, emotionally and mentally. Maybe I was feeling too buoyant, and I had to come down a little bit.

Actually, I guess I know why. Two things happened today: My hair started falling out again and my ex moved the rest of his stuff out, and I had complicated feelings about both.

My scalp started aching this weekend, and I had hoped it was because I’d been wearing a big garden hat. Today, little pieces of my super-short hair kept showing up on my desk, on my laptop, in my hands. I was told there might be mild alopecia from the PRRT, but my hair had already thinned from the earlier chemo.

Losing my hair had never really bothered me before. When my hair fell out before, I had believed that someone loved me and thought I was beautiful no matter what, and I couldn’t stop myself from thinking I was wrong on both counts. Even as I thought that, I felt disgusted at myself for having such a blatant moment of self-pity. But after trying to banish the negative thoughts and everything else you’re supposed to do, I couldn’t and so I decided to indulge and let myself cry so I could finally let it go.

I was going to go to meditation after work today and come back when all his things were gone. That would have been better, but I had to answer some mundane logistical questions, and I needed to ask some equally mundane questions about the cat litter genie and some remote controls, so that’s how I ended up crying in front of my laptop instead of enlightened and beatific on the G train home.

I don’t think my sadness is specific to this relationship even. I recently said that if I ever felt sad, friends should remind me that my ex took all the dental floss. (We had like six of them too. He took all of them.) Sometimes when I’m sad about one thing, I get sad about everything all at once.

Why do we always think we’re going to the the exception to heartbreak, to illness, to tragedy? And sometimes the thing you fear the most happens. Your cancer comes back. Your relationship ends. Your hair falls out. And you’re still here. Now what?

When I find myself worrying about my health getting worse again, I have to remind myself that worrying won’t stop anything from happening. It will just make me miserable in the present. And right now, even though I felt a little sad, I’m OK. I don’t have the illusion of immortality; most people who have been through cancer don’t. Can I live like I don’t know how much time I have, because none of us does?

A lot of the meditation and yoga talks discuss suffering and not being in the present enough. I think I’m more melancholy than most people about the passage of time. I’m not sure why. When I would go on vacation as a kid, for instance, I would think in the weeks afterward: “A week ago, I was doing this fun thing in this great place.” I was always comparing the past with the present and the past seemed better. Sometimes I even am sad while something good is happening because I know it won’t last; I’m nostalgic for things as they’re happening.

That’s weird. I know. Yet I still find myself trying to grab on to good and happy things and I can’t hang on to things. Time passes. It’s almost like living in the moment, but I hold on too tight.

I had methodically removed a lot of breakup items, but today he took his beach stuff and my beach towel remained, still smelling of the beach. The woman at the beach (maybe two years ago now?) didn’t know her relationship had an expiration date. She thought she had longer to live in general.

The past doesn’t always make me sad, of course. An unexpected benefit of my ex moving out was the unearthing of a lot of my old journalism clips and my photos. I also found my high school yearbook that I had chided him for putting away in a box somewhere. “I still used it as a reference material,” I complained to a high school friend who was recently in town when she tried to explain to me who someone was. Now it is back within easy reach on a bookshelf where it belongs, along with my 1998 interview with Britney Spears and other important documents. (“She doesn’t say much,” I complained in the accompanying email to the editor of the publication, back in the days when you sometimes printed out emails.) I found CDs of friends’ bands and mixes, including mixes of Phil Collins and hair metal that a friend made for me. I actually physically hang onto the past and never throw anything away.

Sometimes I feel buoyant and free and happy. More often as every day passes. Usually, in fact. This weekend I even worried that I didn’t feel sad at all.

I hope the treatment continues to work. Hair loss is a small price to pay for feeling better. It’s one of the less common side effects. I’d hoped since I didn’t have the more common side effects, like post-treatment nausea, that I would skip this one. Hair loss is probably better than radioactive vomit. I will take baldness over the way I felt earlier this year.

And yet: Vanity. Today I felt ugly and stupid. Luckily the bad things don’t last either.

I have been able to return to yoga a little bit. I spent this weekend in the community garden. Even though it was sweltering, I get comfort from weeding the garden path. I was worried I’d get too sad from being alone with my thoughts, but sitting on the warm bricks and the feeling of the sun on my skin, the smell of the earth, the sound of the birds, all of the descriptions that other people have written more eloquently about so many times because it’s so good—it all makes me feel so happy. I suppose there’s something comforting and permanent about the Earth and the sun, though that’s an illusion too.

Before the sun eats up the world or however the world ends, however, I have some fun things planned. I planned a birthday trip in October to one of my favorite places. I’ve been meaning to go back since I was 11 or 12, and I specifically remember being sad about the end of that trip for weeks. This long holiday weekend two of my favorite people are coming to town and I’ve been terribly neglectful about making plans. Then more friends are in town. And then more friends are in town. A friend was in town today, in fact, and I got to see her unexpectedly for half an hour and it pulled me out of my self-pity.

I do miss having someone to always do something with. Even though I have packed lots of activities into the past month, I liked having a default person to hang out with.

I started the day with a free outdoor yoga class, and then I took the ferry to work and I was feeling really good before I unexpectedly slid into this temporary sadness. I was feeling so inexplicably sad by the middle of the day that I also took the free yoga class in my work building. (A cockroach showed up at the end of class, and now I will be doing savasanas with one eye open.)

Sometimes all the yoga and meditation and looking on the bright sides of things just don’t curb the sadness, and you have to just be sad in order to let it pass. Since I started writing this, though, I already feel much better. Only my scalp hurts now.

Tomorrow I’ll probably wake up to less hair, but I’ll also wake up to my own apartment and the purr of cats looking forward to breakfast. Tomorrow I will be Kelly Clarkson. Tomorrow I will be Vince Neil (sadly with less luxuriant hair).

 

Changes

It’s been a little over a week since the PRRT treatment. I’m feeling a lot better. For the first time since late April, I’m feeling hopeful again. I got my MediPort in and am getting my PICC line out next week. The doctors have taken me off daily hydration, so I am doing my IV only every other day.

I’m now planning some summer getaways and maybe even vacations. It was much cheaper to plan for vacations in early spring, when I was sick, so I am probably going to wait until off-seasons return and hope that I feel better. I went to a cancer support group tonight, and one of the things that kept coming up is how hard it is to plan. You’re uncertain about your health. What if you get sick again?

The second reason it’s hard to plan is superstition. If you do make plans or let your guard down or allow yourself to be happy, you could be setting yourself up for disappointment. There’s often a feeling you’re inviting illness back. Since I’ve had cancer, I felt that way, and I don’t think I realized how common it was among other people who have been through it. Once you’ve had the rug pulled out from under you, you’re understandably jumpy.

At one point though, I noted all my rugs had been pulled out. And I’m still OK. Some of my biggest fears were realized. I’ll always have cancer. A long-term relationship ended. And here I am. So maybe I’m not going to worry so much anymore.

One of the things I’ve always found strange about a breakup is how someone goes from being a stranger to someone you’re extremely close to and then back to a stranger. Their stuff is in boxes. You see them in new clothes with new people. Sometimes it happens with the end of a friendship, but with the end of a relationship, it’s such a divide. Together, then not. Close, then strangers. In some cases, you realize you never knew that person at all.

The cats are enjoying the boxes in the apartment. I may just rent part of my apartment as storage space for extra cash and so the cats can still have boxes to play in. Ziggy loves to eat tape and Lux enjoys tearing apart cardboard, so I’m not sure that my storage facility would be very popular.

Within the past week, I’ve been to a meditation and the support group, as well as a hypnosis workshop for cancer patients. I was a little cynical going into it, but I think it actually worked with curbing some negative thoughts. I definitely felt better afterwards. I’ve also been doing some fun things—hanging out with friends, a comedy show, a summer solstice celebration in the community garden.

It’s also the start of summer, my absolute favorite season. Summer also brings a lot of free activities, and I love free things. I love hot dogs and yoga in equal measures, and both are free in Brooklyn Bridge Park. Last summer, I could take the weekly morning yoga class then take the ferry to work. I’m looking forward to the summer.

MediPort, Part 2

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

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

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

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

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

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.

A Year

What would you do if you found out you had a year before you probably got really sick?

I met with the PRRT doctor at the nuclear medicine department at Memorial Sloan-Kettering today. The doctor explained what the regimen would be and how it works: it sounds like treatment is four and half hours that includes the PRRT, as well as something to protect the kidneys, every two months for four cycles.

The way that (I think) the PRRT works is that I’m given octreotide, a hormone I already take to try to curb the symptoms to combat my VIPoma tumors. The cancerous tumors have octreotide receptors, and when the cells bind, a radioactive peptide emerges, like a Trojan horse, and kills the tumor cells. However, when this happens, the VIPoma, the cause of the symptoms (particularly the diarrhea) would also be released and my symptoms would get worse for several days. I would be radioactive and have to avoid pregnant women and small children for a few days. I would set off detectors while traveling and would have to carry a card.

PRRT is finally available in the United States, though it’s been available for years in Europe, Asia, and Australia for awhile, so even though it’s a new treatment here, there’s quite a bit of data on it. My type of tumor (VIPoma), however, is very rare, so there’s less information about that. I think the doctor told me it’s effective in about 60 percent of cases. It doesn’t cure the cancer, but it often shrinks the tumors or keeps them at bay enough to stop the symptoms. People tend to have relief from symptoms for an average of three years. But—there’s always a “but,” especially when it comes to me—according to the tests that measure Ki-67 markers, my tumors are very aggressive. If it works, I would probably have about six months of relief.

I had thought that I was finishing the chemo cycles that remain, but it seems as if I’m going straight to PRRT. I’m slated to start the PRRT treatment on June 13. I’m getting a MediPort again on June 18.

I was supposed to have chemo tomorrow, but my blood counts are too low. The doctor said that the low hemoglobin is not related to the chemotherapy, but I’m not sure what it could be related to. I was very short of breath on Friday, but I was so upset and tired that day, I didn’t think much of it. I’m a little worried that the low counts may also put off the PRRT, which can cause some bone marrow damage.

Among the pros: PRRT causes limited hair loss so I’ll be a swarthy lady again soon. I’ll be able to travel, but I’m still limited by my access to fluids as I need them. (This weekend, I went up to the Hudson River Valley and needed help hoisting my suitcase to the overhead space because I had to transport three bags of saline. My IV pole is relatively compact but didn’t fit in any of my bags.) Also, I picked up my opium tincture at the pharmacy and my insurance now covers it; though it’s still $65 for a relatively small amount, it’s better than $125.

I think it’s the last thing they can try. After the PRRT, I’m not sure what would happen. I guess I would be sick again. Doing the math, I would have about a year, but that also includes treatment. I’m going to say that I have only a year left, because that means I will live forever. Maybe I’ll find a reason to hang on for longer, like if the last season of Game of Thrones is delayed. (I don’t want my ghost to haunt the offices of HBO because I don’t know who sits on the Iron Throne.)

It’s both longer and shorter than I imagined. I thought I was going to die in January. And now I might—if it works—have six quality months and six months that are OK.

It’s weird to know when things might end. (Spoiler alert!)

Of course, there’s always the unexpected. Don’t say I could be hit by a bus tomorrow. That is extremely unappealing. And unlikely, considering how slow they are. I was late to my doctor’s appointment because I had to wait 20 minutes for the bus.

Speaking of buses, I had a very short, attainable bucket list. It was about three things. The B61 bus would do a loop and go by the old location of Rocky Sullivan’s bar in Red Hook, then go to IKEA, and then stop near the bar again on its way to towards downtown Brooklyn. I always wanted to get off the bus, do a shot at Rocky Sullivan’s, and then get back on the same bus. I achieved this feat several years ago, though I wouldn’t recommend running down a block with a belly full of whiskey.

There is a restaurant in my neighborhood that offers a personal pizza for free with the purchase of a draft beer in the bar area, and I also did this a few years ago. (And the pizza is really good and of substantial size, and we also received garlic knots.)

The last thing is to go to Roosevelt Island. I’ve had a strange obsession ever since I moved here and had a car and would see the ruins of the tuberculosis hospital at the end of the island. My first gym was at 59th street near the tram. I would like to have a whole Roosevelt Island day with the tram and maybe the ferry, followed by a viewing of Dark Water, which takes place on Roosevelt Island, even though I can’t watch horror movies.

Really though, this is pretty good news. Hopefully I can get some answers to some of my questions tomorrow.

Help

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

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

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

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

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

Big, terrifying changes are on the horizon.

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

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

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

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

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

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

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

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

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

It’s Going to Be OK

Yesterday, I was out with a friend and I had a little bit of trouble catching my breath. I wondered if I could actually feel my heart breaking. I think I just needed potassium, which is less melodramatic but extremely important.

I came home to a lasagna dinner and oatmeal cookies made by some garden members who put together a meal train. I came home to so many messages of love and support. I can’t be alone right now and have arranged not to be. I go to some pretty dark places emotionally and I know when to ask for help. I am worried about dying alone, but everyone has been so kind in assuring me that I’m not alone. I get so sad when I think about going to urgent care alone. In the past 24 hours, I’ve shed so many tears of sadness, but of gratitude as well.

I know I have been burden to everyone, especially those close to me. It means so much to me that everyone has been so kind. Sometimes I feel guilty, as if I don’t deserve all of this.

I used to love being alone and independent. I hate that illness has taken it away from me.

I want to be well again. I want a break from cancer. Sometimes I forget. I thought about trying to go to a pool and then I realized I have a PICC line in my arm. I had forgotten for a minute that life has changed. It continues to change.

The PRRT might actually give me a respite from the effects of this disease, but if it doesn’t work, that’s all they can do. That’s scary. I am so scared and so hopeful. I am savoring this hopeful time, because I know it’s limited.

Earlier this week, I took a short break from Facebook. I didn’t announce it, because often when people say they are taking a break to clear their heads, they’re back within days. (Like me, but it’s OK because I didn’t make an announcement! That is what I tell myself.) Also I don’t believe in denying yourself things that give you joy, so I don’t do cleanses or dry Januarys. Eat! Drink. Be merry! Do everything while you can.

When I eat hard candies, like the sourballs they have in a bin at Sloan-Kettering, I savor them for less than a minute before I chew them up. I feel like I’ve been trying to do that with good things these days. I am too eager and grasp at them.

My social media break, by the way, lasted three days. I don’t think I cleared my head at all. And I need social media right now to remind myself that good things are still happening. Terrible things are happening too. My sadness is a blip. Everyone keeps telling me that it’s going to be OK. I keep telling myself that over and over.

The sadness has been taking a physical toll: I can’t sleep and my neuropathy has flared up, and it’s been a reminder to take care of myself.

I know it’s within me to make things as OK as possible. I am trying to let go of a lot of bitterness and anger, but it’s hard. Several people have recommended to figure out what makes me happy. I am trying to seize the moments of goodness. I’m trying to remember the good without the bad.

I have spent some time looking back and thinking, what if? What if? I can’t change what has happened. I need to move forward and try to believe that everything is going to be OK.

Ziggyandme

 

Delay: Good (and Maybe Terrifying) News

Last week, during a particularly rough afternoon, I counted out how many days (72) and weeks (10) I had before I would be done with this cycle of chemotherapy. This week, those numbers are pretty much the same. When I went to my doctor’s appointment on Wednesday, my blood counts were too low to receive chemo. I got a shot of Neuopgen to boost my white blood cells, and chemo has been rescheduled for next week.

I had hoped with chemo I would be able to have more of a schedule and be able to plan a bit better but with my surprise hospitalizations and delays, that doesn’t seem to be the case. The good news is that PRRT may become available soon, so I am meeting with a doctor on Tuesday.

Also my personal life has been falling apart since October. It’s OK in the grand scheme of things, but something surprised me so much yesterday, I don’t know what to do. Yesterday I cried on the train, which I find very cathartic. (It’s grieving alone yet among people.) I want to run around in circles and rip out my hair (but it’s too short go get a good grip and so much is already gone) and then go out into the middle of the street and scream because that’s the only response that seems to make sense. Once my vocal chords are raw, and I am physically exhausted, then I would sleep for several weeks until maybe things made sense.