A Pain in the Neck

I am at urgent care again after this weekend’s setback. It’s just so they can do the tests more quickly and give me fluids if necessary, but since this is urgent care, it is likely I will be here most of today. It seems as if the radiation isn’t going to work and the chemo isn’t going to work either so I will probably have to give myself daily injections of octreotide, which isn’t doing much either. There is another drug that insurance won’t approve and then maybe one they will that may or may not help with these symptoms.

It’s all symptom control at this point. I had hoped to get better enough to function for a bit, but if that is off the table, then I am ready to go. I am tired. Most of my loose ends are wrapped up. I have spent the last five years seizing happiness in the well times (and in the sick times too). And, truthfully, I have always been obsessed with the fleeting nature of happiness and have always tried to desperately hang on to it whenever possible. (According to yoga classes, this is something you are not supposed to do, but it’s something I do anyway.)

I have made plans with some of you for the upcoming months, and I know I still need to get back to some others. If I haven’t gotten back to you, it is because I have been sleeping and staring into space a lot. So of it takes me a long time to get back to you, or I don’t, it’s because I don’t feel well, not because I don’t want to talk to you.

Last night, tired of winter’s grayness, I looked through some gardening catalogs and tentatively circled some plants I’d like for my garden plot this summer. Today, the catalogs sat at the edge of the couch, mocking my misplaced optimism. The entire time I’d been selecting the flowers, the question nagged me, “Will I be here to plant or enjoy them?” Everything in my life seems like it’s punctuated with a question mark. Except for one thing, but it’s the certainty that faces all of us.

Yesterday, I had been feeling a little bit better than Thursday, and I got some work done and cleaned up the apartment, but this morning, I felt even worse. I’ve spent hours napping. I feel like the doctors are running out of options. If this chemo doesn’t work—and it doesn’t seem like it is—then what? They keep trying things, and things keep not working.

A few months ago, I was planning what workout classes to take on ClassPass or places to check out for a possible vacation with my mom and some friends. Today I made a morose list—it’s something we should all do, I’m told, but it’s taken on more urgency—of things to wrap up, what to do just in case these tumors can’t be controlled. Nothing needs to be settled tomorrow and I assume I have more time, but I think I might have less time than I initially thought. I spent non-napping time thinking about the practical and impractical aspects of mortality.

I don’t have a lot of assets and have successfully avoided a lot of adult responsibilities, so I just have a few important things on my list and then a bunch of random concerns. I don’t want my social media lurking after I’m gone, haunting the internet with birthday reminders, so I have to pass along my social media passwords. I don’t want my posts floating around in the internet ether. I’m oddly surprised by how alive people are until they’re not. I know that doesn’t make any sense. But I had expected death from disease to be a slow evaporation, like I am lost molecule by molecule, until one day I’m just no longer around.

When I came home from the hospital, my stand-alone wardrobe had been reorganized a little bit, prompting me to engage in a manic closet-cleaning project to help my clothes find loving homes and to try to make some money. This clothes-selling thing is a whole other social network with its own wants and needs, however, and I don’t have the time to devote to it. I waffle between disappointment that the few things I managed to put up aren’t selling and relief that I don’t have to part with my beloved clothes and accessories, even though most of my days are spent in sweatpants, diapers and pajamas these days. Also, I don’t want really to get rid of anything. All my clothes bring me joy, and I regret every piece of clothing I’ve parted with. But that’s a whole other post I have yet to write. So I have one more password to pass along, to close the doors of my virtual closet.

As for my garden, I have a few perennials, and when gardeners move, they can leave plants up for grabs. Only a few hostas are sentimental—one is a descendant from my old yard in Ohio.

The cats will be OK. I like having relatively independent pets; that’s why I have cats. In taking stock of my life, I’ve had to come to terms with not having children—something I was never sure I wanted but also something I had thought, for a long time, would be a definite possibility—and at least I don’t leave children behind. Something about Ziggy, the two-and-a-half-year-old cat, always has broken my heart. He’s so needy. I feel bad enough leaving him behind. I look into his big Keane-painting eyes and worry that he won’t know that I had no choice about leaving him. That’s hard enough. And he’s a cat.

I’m relatively at peace with my life, but there’s the realization that the world will go on without you. A long time ago, I went to a talk about nostalgia and the speaker provided examples of how people throughout history have always thought they lived in the end times, in some part to avoid facing their mortality and ultimate insignificance. (Of course, environmentally we might actually be toward the end, but then when I Googled for a news story for a hyperlink, a lot of global warming conspiracy stories came up from “sources” like Breitbart and “American Thinker” came up. I feel simultaneously worse and then better about leaving this world behind.)

What haunts me are all the trivial loose ends, like my books-to-read pile. I keep thinking of the last episode of 30 Rock, which I haven’t even seen since it aired in 2013; it’s just a scene I’ve read about and haunts me. When Liz Lemon thinks Jack Donaghy is about to commit suicide, she pleads, “There’s so much to live for! Don’t you want to know how Mad Men ends?” What if I never find out who sits on the Iron Throne?

What if this, today, with my roiling insides, is the best I feel? I’m just not sure what else I can be doing if I don’t have the energy. It has been exactly five years since I found out I have cancer. Since then, I feel like I’ve adequately seized the times I’ve felt well. I’ve had a good life. It’s abbreviated, not yet over. Am I preparing or am I skipping ahead to the end too soon?

Today, like every day, I had plans to be productive. But I’m often tired. It was rainy out. The apartment was relatively clean. I didn’t have any freelance work to do. I curled up with the cats, drank tea, ate some snacks and finished reading a book.

Since I’ve been out of the hospital, I haven’t improved much and so I’ve been more or less holding steady. I meet with the doctor on Wednesday to see if there’s a Plan B after radiation. I haven’t had much energy, and existing out of the hospital is more tiring. I have been bad about getting back to people or doing things. Sometimes, I have to make a choice between things I have to do—dishes, cleaning, work, laundry—and other things. Usually I can pick only one or two things to do. Even things like blogging or writing texts and emails seem like insurmountable tasks at times. When I have bursts of energy, I try to do a lot of things all at once. Today wasn’t one of those days.

I’ve watched a lot of TV. Thankfully, I was behind on a lot of shows anyway so I finally caught up on a few things I started watching while recovering from my liver ablation last spring.

My apologies if I haven’t been in touch. I feel as if I’m operating at 50-60 percent of my usual energy level. There’s not a lot they can do for these tumors, but hopefully the doctors will have a plan.

I finally have some good news: It looks like the radiation is starting to work. I’m no longer the dried-out husk I was when I checked back into the hospital on January 8. I’m still sick, but I’m no longer nauseated and my bowel situation is much improved. My last radiation appointment is Friday morning, and I’m slated (knock on wood) to be released today.

Once home, I will still need daily four-hour fluid infusions, and I’ll be leaving here with my PICC line still in my arm. A nurse is supposed to come by tomorrow and show me how to do it myself. I’m also going to be on a lot of supplements. I won’t be completely well but at least I will be out of here and I’m feeling a lot better than I was a week ago.

The week before last, I really did worry that this was it and that I wasn’t ever going to leave this place. At some point, in the future, I know I may check in here and not check out. Thankfully, it is not this time. The doctors think the radiation is working. This buys me some time. Of course, people sometimes say that you don’t know what will happen. This is true. They often follow up with something like, “Anyone could be run over by a bus tomorrow.” That is not a better option. To that I say, “No thank you.” I would not like that. I will take cancer over that for now.

I said goodbye to my mom today. A part of me worried I would never see her again. Since she arrived, I have felt better, and she is taking credit for my improvements. Being sick has been hard on those I’m close to, and it’s easy to forget that when you’re in the mire of being sick yourself.

Of course, now that I am being released, my boyfriend has a cold. My immune system is compromised a bit, so I will be avoiding public places for awhile. Except for the train, which never has any germs.

I have to adjust from being a relatively well person in the hospital to a sickly person in the real world. I no longer have to measure my output, and as gross as it was, it seems strange. How quickly we adapt. Being hooked up to an IV only four hours a day instead of 24 hours will seem strange. During my last hospital stay, I was briefly free of my IV, but I brought it into the bathroom with me anyway. “What are you doing here?” I asked the pole, surprised, as if it had followed me on my own.

I have two radiation treatments tomorrow, and my final radiation appointment on Friday morning. With any luck, this buys me some wellness and some time.

I have currently spent most of 2018 in the hospital. People have asked me why, and there’s really no delicate way to put it: My body is trying to poop itself to death. It is so ridiculous that I can’t even be embarrassed about it. After everything, is this how it ends?

A bit before Christmas, I started feeling sick and I emailed my doctor about getting more potassium supplements. They responded that I would be OK, but by New Year’s, I was also throwing up on a regular basis and was taking anti-nausea medication to just make it through the days without being sick. When I went to the doctor on January 2, I suspected I might be admitted to the hospital but I was still a little unprepared when I was admitted to urgent care and then the hospital for four days. My potassium was 1.7 and 3.5 is the minimum safe level. Extremely low levels of potassium can put your heart rhythm off, and my EKG indicated this was happening. Things like cleaning or even walking up the steps from the train made me exhausted, and I felt weak all the time.

During my hospital stay, I was pumped full of potassium. I had a scan of my liver so the doctors could see if they should do an immediate embolization of the tumors,  but it turns out there is still not much going on in the liver. It is the pancreas tumor that is producing a hormone that I think is called VIP. This VIP status causes everything to rush past the velvet ropes of my digestive tract and create mayhem. I can’t hang on to most nutrients.

I was released the Friday after New Year’s. I spent three nights back at home before I returned to the doctor’s office for a fluid check. As I left the house for work that Monday, I had an inkling it might be the last time for a while. As I shut the door, saying goodbye to the cats, I worried it would be the last time I would ever see them. At times, I still do worry that I might never see them again. I miss them. I want someone to put ties on two of the kittens and bring them in as visiting business associates. I want to put the other cat in her Halloween granny outfit and sneak her in as my grandmother.

The doctors can’t release me until I start feeling better and can retain fluids. For that to happen, the tumor needs to stop producing the hormone. The tumor can’t be operated on, because it is too close to an artery, so radiation is the only option. I was told last week I could start feeling better by this week. However, on Monday, one of the radiation doctors said that I might not feel better until after the radiation ends, or even a few weeks after. My radiation stops January 29.

I didn’t realize I would possibly be here for a month. My mom is coming to see me. I was worried I wouldn’t see her again. I’m worried that a bunch of lasts happened—my last birthday, my last summer, my last time seeing some people—and I don’t know yet. I had been operating under the assumption I would get better, but one day I won’t. How do you know when it’s going to be the end?

There are worse things than your body trying to poop itself to death. I have learned in the past few weeks there are more humiliating things than wearing a diaper at age 40. It is worse when you have to collect your violently expelled bodily fluids in plastic bins and then call someone to empty them and then clean up as best you can for the benefit of your roommate. It is even worse when you heart monitor falls out of your pocket on your foot every night while you rearrange your plastic waste bins. It is much worse when your ill-fitting hospital gown dips into your full urine collector but a small mercy that it has not soaked up anything from the stool collector or from your neighbor’s bin.

For every noble version of dying and being brave in the face of illness, there are more grim realities like this. I don’t talk about it much, because it’s pretty gross. But once you start wearing adult diapers, it’s hard to feel much more embarrassed. Or so I thought, until my bodily fluids collector went missing on Sunday. I didn’t tell anyone, partially because I couldn’t bring myself to launch an investigation or even figure out how to initiate a conversation about such a mystery. “Has anyone seen my poop vessel?” I stayed quiet until the doctors and nurses remarked the next day that things were looking better for me and I had to break the news that nothing was recorded.

I spend a lot of time staring off into space, calculating the best time to go to the restroom. I spend less time (but too much time) looking up success and failure rates for radiation for neuroendocrine tumors.

I braved a lot of things that tested the boundaries of my squeamishness and survived. In roughly a day and a half, I had a new IV put in, blood taken from an artery, a neck catheter put in and removed, and a PICC line put in, and had several injections of lidocaine.

I have been trying to remain upbeat, but I’m a little bit scared. A visitor told me that last week, when I was on a liquid diet, she worried I would’t make it to the bathroom and back on my own. Today she said my cheeks look fuller and I look a lot better. I can eat solid foods, though I’m still not digesting very well. I don’t have to wear the heart monitor anymore. I’m going to try to wear pajamas instead of these drafty hospital gowns. I have a new room with a nice view from the bed. I have plenty of visitors and I have a lot to keep me busy. I have a lot, period.

Several weeks ago, I panicked and took down my blog, citing a family matter. I’m reactivating my blog today for several reasons: First of all, my tumor has made this year eventful so far. I’ve spent more of 2018 in the hospital than out and I’d like a way to easily update people on what’s going on. The main reason, however, is that I enjoy blogging and find it therapeutic. I’m not going to let anyone try to stifle something that brings me even a small measure of happiness.

There are people who would try to steal your joy. They will take things away from you. They will take away material possessions and money—and even try to turn people against you—but they can’t actually take away your happiness. They can make you sad for a little while and they can leave you disappointed and betrayed. Yet money or whatever they’ve taken won’t make them happy, and often, when they see that you are still happy or happy once again, they decide they need more from you. They clearly didn’t take enough the first time.

Once happiness isn’t achieved, they become frustrated. They see happiness as a kind of pie, and there is a finite amount. To them, it’s a tangible, quantifiable thing that they can possess and steal. They are taking what they believe is owed to them.

I want to explain to these people—to the people who made me panic and take down my blog—that they don’t understand happiness. They’re going about it wrong. (No matter what I say, they would get defensive and wouldn’t listen, so it goes here, along with my other random thoughts.)

I think of happiness as more of a candle or a living thing—it needs air and nourishment to breathe and continue. I’m rolling my eyes at myself here, but it needs kindness and love. The people who try to take it from others take what they can, but the flame goes out. The living creature dies. They’re left holding an empty vessel, and they’re angry. They think they haven’t taken enough. Meanwhile, the other person, after some sadness—mostly not even over the missing or stolen thing, but about the betrayal—cultivates happiness once more. This is infuriating to the would-be happiness thief. It’s not fair! Why are they not getting what they so richly deserve?

They don’t understand that happiness begets happiness; kindnesses produce kindnesses in turn. It’s often fairly easy to find just a small measure of  happiness. Be kind to someone and it can come back to you. Instead, there’s often meanness, cruelty, deception, and pettiness. Nice people who want to see the good in others give people more chances than are deserved, but happiness will continue to elude those who always opt for the taking route instead of the giving one.

I don’t consider myself a particularly happy person or very cheerful. I was goth in high school and college. I’m not particularly Zen or spiritual. I often get giggles during yoga meditation. I’m cynical. I can take public transportation for only a few minutes before I wish ill upon fellow commuters committing egregious acts. I often find myself thinking that I don’t like people all that much.

I think it’s odd when people here say I’m really nice, because I think I’m probably one of the least friendly Midwesterners you’ll ever meet. I was surprised when one of my hospital roommates remarked that I am a happy person. I’m not an expert on loving kindness.

Yet I think that to be happy, you have to be sincerely willing to make others happy. Not in a people-pleasing/drive-yourself-crazy kind of way, but I think it helps if you genuinely want to be nice to people. Lately, there’s been a blatant and pervasive selfishness in our culture, and as someone who won’t be able to deduct medical costs from taxes but gladly will pay for education of other people’s kids, I don’t understand how people can argue so vehemently to make it harder for me to get healthcare. I read a column called “I Don’t Know How to Explain To You That You Should Care About Other People” and realized it is what I have been trying to say to some people for years. I’m not even that nice. I don’t even like people very much, but as a general whole, I think it’s basically a good idea to try to be nice when possible.

Sometimes it will be thrown away on people who just keep taking, and that’s when you have to check to see if they are taking advantage. Sometimes you will suspect the worst of people and you will be right. Sometimes, someone will spread lies or half-truths to perpetuate the own narrative they have created to justify their actions, and you’ll want to shout from the rooftops, “That’s not what happened!”

Often, though, a small act will make someone feel good, and it will be worth it. One of my friends, who also posts daily gratitudes, really takes the time to give sincere compliments, making people break into warm smiles about their eye makeup or accessories or a skill, and I see how faces light up. I’m too shy to do that, and I’m sure I would come across as sarcastic, but I do what I can. I’m trying to take the time to thank people and let them know how much I appreciate them. I’m trying to make more time for people who care about me and trying to spend less time and energy on people who try to make me feel bad about myself so they can feel better—another technique that I’ve known does not make anyone any happier.

Life is short. Mine is probably going to be much shorter than I want. My tumor has been making me pretty miserable, but I’d like to take control of what I can and seize up as much happiness as I can while bringing joy to others. There’s enough for all.

I started writing this post in September and last edited it in early October. I kept meaning to finish it. After a series of sad and hard things happened and medical updates pushed this post back, I didn’t feel like publishing it. On bad days, when I logged in to the blog to post or moderate a comment, the title of this one, frozen where I left it, seemed to mock me. It has been a year of extremes—high highs and low lows.

But. There have been good things, even at points where I have been at my lowest.

I never posted my results of the last scan: the tumor is bigger and active, producing a hormone that is making me feel sick. I am getting a hormone shot once a month to try to counter the effects and hopefully stop the tumor from growing for now. My neuropathy remains active, but I’m trying not to let it get the best of me, and I’ve been trying to stay as active as possible, even if it means some cramping and twitching. Physically, I am tired, and I accidentally slept Thanksgiving day away, a reminder that my body is often in charge more than my will, and I’m often at its mercy.

I just reread this old unfinished blog and decided to thaw it out, like a Thanksgiving turkey. The last line in the unfinished post seems appropriate for today. I need to remain grateful and know that despite the bad and difficult things that undoubtedly are on the horizon with cancer and neuropathy, there will also be unimagined good things too. I must remain grateful and I will try to remember to look for these good things. Below is my early October post.

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Several Fridays ago, I had to work late. I emailed my boyfriend to let him know I wouldn’t make the usual ferry home, because we had plans to go to dinner and then go to a friend’s DJ night. I suggested I go straight to the restaurant, since taking the train straight to Williamsburg made more sense than taking a detour home. My boyfriend was oddly insistent that I head back first, though I protested that didn’t make any sense.

“Don’t you want to sing ‘Happy Birthday’ to Ziggy?” he asked. It was our oldest cat’s second birthday. Of course I did. What kind of weirdo wouldn’t want to sing happy birthday to their cat while feeding him a special tuna dinner? My boyfriend was secretive about where exactly we were having dinner, so I suspected something was up. (He had also told me not to volunteer for my garden tag sale that Saturday, but it had been moved to the next day at the last minute anyway.) Still, I was surprised when we walked toward the back of the restaurant and two long tables of friends greeted me with “Surprise!” My birthday was still almost a month away, so I was definitely surprised.

Since my cancer diagnosis nearly five years ago, it’s been a rollercoaster—or a snowglobe. As the snow in my world settles, with every diagnosis or new ailment or piece of bad news, my life feels shaken up with a new storm. The people in my life, however, have helped me stay glued to the bottom and weather all of this, and for that, I am so grateful and lucky.

Yesterday was one of the hardest scans I’ve had thus far, and it’s not because they had to use a tiny vein that burned when the contrast was injected. It’s the first scan that I have had with no hope of getting “better” or not having cancer at all. After the doctors told me almost three months ago that I would always have cancer and that it’s just a case of managing it, I had a month of ups and downs until I settled into life pretty much as it was, more or less. I’ve mostly been not dwelling on it and trying to wring as much enjoyment out of the past few months as possible.

Of course, I’ve failed spectacularly on occasion. I spent several hours of my birthday wishing I’d never been born at all. When things go wrong, I sometimes think I wish for a terrible scan so I don’t have to deal with anything anymore, but if that wish were to come true, I know I wouldn’t want that at all. It’s a wish born of petulance and with a blind eye turned to the reality of dying.

I didn’t realize how hard it would be at the hospital, when even in my most pessimistic times, I still had so much hope. Even in the depression after my stem cell transplant, I was still so hopeful that I was done with cancer for good. After the Whipple, sewn up and sick for a month, I hoped I wouldn’t have cancer anymore. After the liver ablation, I had thought it wouldn’t come back anymore, that I was an exception.

Now it’s all I can do sometimes to not grab fellow patients by the shoulders and ask, Why is this happening to us? I actually don’t want any answers. I don’t want to hear that everything happens for a reason or that this is a plan. I definitely don’t want to hear it could be worse or I should take comfort in what I have. I don’t know what I want.

Tomorrow I’ll find out what the more sensitive scan has showed. From the way I’ve been feeling, I can tell maybe the news isn’t going to be good or even just meh. I’d like to spend more time on a break from treatment but I don’t think that’s in the cards.

I have many drafts of blogs that I started and never finished, including one about the two-year anniversary of when my pancreas tumor started acting up. One detailed all the good things that happened this summer, then something bad happened, and then it felt too late to post it. Part of the reason I haven’t been posting is because I had been busy trying to soak up every moment of the summer and enjoy myself as much as possible. I wanted to have a blast this summer and, for the most part, I succeeded, despite cancer and neuropathy. There have been several vacations, trips to see friends and family, concerts, bike rides, ferry trips, outdoor yoga classes, and a flurry of fun summer activities.

In general, it was a summer of high highs and low lows. Sometimes I can’t believe how lucky I am and sometimes I’m so sad, I wonder if it’s possible drown in a pool of self-pity or choke from a lump in my throat. Earlier today, I found myself hoping a meteor would strike the Earth so I wouldn’t have to deal with anything. I realize it’s a bit selfish to wish for the obliteration of the entire world because of my small problems.

Already it has been two and a half months since I was told about the pancreas tumor. It seems like a lifetime ago. After a rollercoaster of a month, I finally came to terms with it. Today an MRI showed that it’s bigger. I was OK with the news; it’s what I expected. Sometimes, it’s smaller things that get to me, like noticing everyone waiting for an MRI is much older. That made me cry and it makes me feel like I’m already living the life of an old person, with the doctor appointments, medications, neuropathy, and scans. (Though I’m a year older as of last week.) Speaking of the neuropathy, it still bothers me, but the spinal tap showed no obvious cause.

What I fear more than today’s MRI  is the super-sensitive PET scan next week that will detect even the tiniest tumors. I think either way, the plan is for some targeted therapy that I am discussing with my oncologist next Wednesday. I’ve been enjoying the past few months as a respite from treatment. My life is broken up into chunks of time of relative health and illness. I would love for a treatment that obliterates the cancer and has no side effects, but I think the best I can hope for is something that keeps the tumor at bay and that doesn’t make me feel too terrible. I’ll know more next Wednesday, when I find out the next treatment steps.