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?

I couldn’t sleep. I started this blog around 5:30 am, when I finally realized I wan’t going to be able to go back to bed. One of the strange side effects of the peripheral neuropathy is that sometimes I feel buzzy and kind of manic in the middle of the night. I actually haven’t been taking Gabapentin for weeks, but tonight, my feet, ankles and calves started cramping up, so I took it again. It’s been a long, kind of strange day. I started chemo again and have been reunited with my old companion Dacarbazine, the D in the ABVD treatment for my Hodgkin’s lymphoma about five years ago.

I headed to see the doctor at Sloan-Kettering today, hoping there was a plan B in place. The radiation only slowed down the side effects of the tumors (namely, the diarrhea), but it’s still pretty bad. I’m on potassium, sodium bicarbonate, phosphorus and magnesium, as well as the daily saline bags, just to keep me stable and out of the hospital. Plus I take atropine and imodium to try to slow things down. In the hospital, I took tincture of opium but my insurance company didn’t approve it for outpatient use. If it sounds like something you’d see an ad for in a Victorian newspaper, laudanum was a tincture of opium; if you’ve read The Alienist, it should also sound familiar. It was used by poets and writers Elizabeth Barrett Browning, Charles Dickens, Bram Stoker and Thomas Coleridge. Laudanum is not the same drug that I received, and that’s probably why I produced no brilliant poetry or literature while in the hospital, only a few blogs and some drool as I fell asleep for about a day after the first dose. After that, I received a half-dose, some bitter drops from a bottle that were placed in a syringe.

As I suspected, the radiation worked a little bit, but it’s not what we all hoped for. Scans show only the tumors in my pancreas and lymph nodes, but the oncologist thinks that there is microscopic disease and that small undetectable tumors are also producing the VIP hormone that is making me so sick. I got an increased dose of subcutaneous injections of octreotide, which is also supposed to fight off the renegade hormone, so I’m a little sore.

So it’s time for Plan B, which is Dacarbazine, every three weeks, probably forever. I looked it up on my older blogs and realized it was my least favorite chemo drug. There’s another drug that just got approved by the FDA, but then the hospital has to approve it and the insurance companies also have to agree to pay for it, as it has a $50,000 per treatment price tag. But that drug is something I would receive only four times and then be done, so I’m hoping it’s something that insurance approves and that I can afford. I’m not hopeful as the insurance company does not want to pay for the last day in the hospital, because they deemed it unnecessary. The hospital was trying to prepare me for life on the outside, where I wouldn’t have a steady drip of fluids and drugs, and where nurses don’t check my vitals and blood several times a day and feed me cups of medicine on a regular basis. I was feeling a little better, but not great. I actually would have been OK staying through Friday to finish my radiation, but I knew the meter was running on my hospital stay. I still had to poop in a bucket until I left. I would like to send the insurance company a full bucket to show my displeasure, so hopefully we can straighten it out.

(An aside: I picture someone at the insurance company looking through my bills, stroking his horns. He leans into his computer screen, smiling, typing a few notes and checking a box. Then he sits back in his chair, wrapping his pointy tail around the base of his desk chair, a habit he developed as a display of satisfaction when he found something the company could argue wasn’t necessary. He picks up his pitchfork, which he uses to eat lunch, and heads to the cafeteria to eat from a warm/cold buffet with offerings like candy stolen from babies, heapings of human despair of the sick, and the fruits and vegetables no longer in the SNAP plan with “harvest boxes”.)

Yesterday, I stayed at the MSKCC outpost for the rest of the day, got my octreotide shots and then zipped upstairs for a bone density test because I have osteopenia, a long-term side effect from my lymphoma treatments. I’m oddly not worried about those results as it seems my long-term is becoming much shorter. Then I went to one of the chemo stations. I got a little bag of some type of steroid to ward off nausea, since Dacarbazine causes nausea for a few days. I suddenly felt an itchiness that spread from my legs to my back and asked the nurse about it. She said it would last only for a few minutes. It’s usually in a more diluted form but a hospital supplier was affected by the hurricane in Puerto Rice, so this one is what’s available. It was fine, but a little weird. (I also have to take Dexamethasone for two days afterward, as well as Zofran, for nausea.) Then I received my Dacarbazine, which take a little over a half-hour, and potassium, because I was a little low at 3.1 instead of last week’s 3.7. It was diluted in a bag of saline, but with my PICC line, it’s much easier to do the chemo and the potassium, both of which sting and ache through an IV.

That brings me to my next bit of news: I’m finally getting a Mediport implant. About four years ago, when I was on a Brentuximab trial, I was scheduled to get one but I changed my mind, since I had only about six to nine treatments left. Since then, I’ve thought that maybe I should have gotten a port. One of the nurses at one of my most recent hospital stays (before the PICC placement) asked about my chemo history as she searched for a vein for an IV, and I rattled off: six months of ABVD, three months of Brentuximab, two rounds of ICE, and a stem cell transplant (though by then, I had a leukapheresis catheter in my chest). “It looks like it,” the nurse responded. Getting a Mediport seemed like admitting defeat before, but now I think I will need it for the rest of my life, and it will make things so much easier. It’s a permanent marker of sickness. The big Whipple scar running down my abdomen doesn’t bother me so much, nor do the 10 radiation tattoos. (In fact, I love saying that I have 11 tattoos. Only one is “real,” a small Libra symbol on my upper shoulder that a friend got for me as a present when we were 20. After these latest tattoos, someone told me, “You’re like Tommy Lee now.”) But the port for me will likely be as forever as my tattoos. I am scheduled to get it not next Monday, but the following Monday.

I was hopeful the Dacarbazine would work, but I’ve gone from declining to taking a considerable turn for the worse. I’m back to wearing night diapers, and my neuropathy is back with a vengeance. This evening, I became snuffly and my throat started hurting, along with my lower back. I was worried to take my temperature, because a fever would send me to the MSKCC Urgent Care, but I thankfully have no fever. My cheeks were flushed when I went to bed, so I’m thinking it was chemo side effects. For now, after talking to one of the oncology nurses, we’re going to keep an eye on things and see how I feel.

I’m getting really discouraged that nothing seems to be working. At first, the doctors said I could have years or even decades. Steve Jobs had eight years. I know I’ve had the tumors for at least five years, and I’ve known they have been active for two. When I found out in July that I was always going to have cancer and that it would be treated as a chronic disease, I thought I still had some quality time left, and I’m surprised that I declined so quickly. I can’t continue living like this, and I’m a little worried it’s going to be downhill from here. This life of saline and diapers could be as good as it gets. When I was in the hospital, it felt like it was the beginning of the end. I was coming to terms with big life things I wouldn’t accomplish, but now I’ve had to cancel some short-term plans.

If all my fluid and electrolyte loss doesn’t get under control soon, then I’m going to have to give myself daily octreotide shots. The focus is trying to keep me out of the hospital.

I can’t be out for too long. I haven’t been able to work out or go to my beloved metal and goth cycling classes or in-office building yoga. I haven’t had any alcohol or caffeine since New Year’s Eve. (That’s why I’m against dry Januarys and cleanses. As someone who has not been able to eat for weeks or drink for long periods of time, I say you should eat, drink and be merry while you can. Then again, I’ve always been a hedonist, so I’ve always eaten the cake or whatever memes tell you to do to indulge in small pleasures during your short life.) But I’m trying to focus on what I can do and not what I can’t. I can have friends over and do some low-key things. I caught up on some TV. I have spent a lot of time with the cats. There lots of good things, but I’m not sure what the future holds. I found out I had cancer five years ago on February 18, and sometimes I’m just tired.

That’s a sad note to end on, so enjoy these photos of cats I’ve taken during my post-hospital life.

 

Cat with her paw on someone's hand

Lulu held my hand.

Cuddling cats

All cats love Lux.

A cat on a a table with roses and wine.

Handsome Ziggy on Valentine’s Day.

Three sleeping cats on someone's legs.

I was trapped under a pile of cats.

A cat in a u-pet carrier with stickers on it.

Lulu inside the space-age u-pet carrrier.

A cat wearing a tie behind a laptop

Ziggy wears a tie to help me with work.

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.

catintieI 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.

********************************************

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.

 

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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.

I am supposed to lie down until tomorrow. When I do stand up for too long, I get a headache and throw up, so it’s a pretty strong incentive to stay put. Yesterday morning, I realized I had a post spinal tap headache, something that is supposed to be fairly uncommon when they use smaller needles, but I often fall into the exceptions category.

The headache is caused by a reduced spinal fluid pressure on the brain and spinal cord. If I don’t get better after bed rest for a few days, then I have to go back to the hospital for them to patch up the leak.

oldphoneThe lumbar puncture itself wasn’t bad at all. There was some initial confusion; I actually got a call from the hospital asking where I was after I checked in. I didn’t answer because of the great outdated no-phone sign in the waiting rooms showing a ’90s-style cellphone. After I saw other people using their phones, I got a photo, because I assume it meant no carphones. Once the check-in issue was cleared up, I went back and changed into my gown. New York Presbyterian definitively has the best hospital socks; also, the hospital wardrobe included pants in addition to the gown, so I say that it sartorially receives the best hospital I’ve been to. (Medically, it ranks pretty high too, along with MSKCC.)

The nurse and the fellow doing the procedure explained what would happen and then they took me to the room, and the fellow reassured me he would let me know what was happening. Once I was in the room where the procedure was being done, I laid on my stomach and they prepped my back with a marker and soap. The main doctor came in and introduced himself and consulted with the fellow about his plan. The fellow was very nice, and when I was telling him that my neuropathy felt better when I was on antibiotics, he was saying that some people had reported that happening. “There’s so much we don’t know about the body,” he said. “It’s humbling.” He said that when a friend graduated from med school, the speaker said, “Fifty percent of what you’ve just learned is wrong. And we don’t know which 50 percent it is.” I personally found it comforting, especially in light of not knowing what’s causing my neuropathy and my cancer prognosis. Something new is always being discovered.

The lidocaine is usually the worst part; luckily the stinging and burning lasts only for seconds. Beyond that, I felt just a bit a pressure when they put in the needle, but it wasn’t even as much pressure as a bone marrow biopsy. Then they filled up some vials with spinal fluid, and I was all done. I just had to wait about a half hour in the room since they were all booked and then I was free to go.

I am hoping that my leak heals up on its own by tomorrow; otherwise I may have to go in for it to get patched up. Relaxing hasn’t been too bad, but I should have read more or caught up on more TV shows. Instead I spent too much time on the Internet and too much time inside my head and got depressed. My moods have been peaks and valleys lately, and it may take some time to even out.

I will find out the results of the spinal tap next Monday. I don’t know what I want. If it finds nothing, then my neuropathy is still a mystery. But if it find something, then there is something to find, and that might not be a good thing either. Test results are always hard.