A Pain in the Neck

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.