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.

The other day, as I waited for news of my MRI, I thought about how it could be the last time not knowing I had cancer. Because it feels like you don’t have cancer until the doctor tells you. It could be something else. It could be nothing. My liver was clear.

But. I went in today to what I thought would be an uneventful follow-up with my oncologist. I talked to her about my neuropathy, which has been flaring up again since Monday, and I added, “I’m happy about the scan, though.”

The liver was clear, but, I have a small tumor now in my pancreas (or what’s left of it after the Whipple). For now, they will keep an eye on it. If it doesn’t grow, then it remains a tenant of my pancreas. If it grows, then they will do a  new scan that picks up even the smallest of tumors, and then they could treat it with something that’s currently being approved by the FDA.

But. I will always have cancer. The tumors will probably keep coming back. They will treat it like a chronic disease. I have years. Maybe decades. Steve Jobs had eight years.

I should have known. I let my guard down for a day and a half and now I’m more disappointed that I thought I could be. I was preoccupied with my neuropathy, which flared up with a vengeance. Electric cramps in my foot last night had me howling with pain. I was exhausted, but every time I relaxed enough to fall asleep, a cramp would jolt me awake. After some gabapentin, the pain went away, but the electric current running through my body never left. A friend described it as an “electrical storm.” I fell asleep with my glasses and the light on, because I didn’t want the pain and the cramps to sneak up on me. Against logic, I felt vigilant with sight and light. I fell in and out of restless light sleep, often with a purring cat curled up on my chest. I noticed only this morning that I have a small scratch under my nose from a well-meaning night kneading.

Everything today feels a little surreal and dreamlike because of the lack of sleep and gabapentin. My face is twitchy. I’m so tired and so awake. I’m not sure why it flared up again, though I hadn’t been able to sleep and I had been so concerned about the scan and the healthcare bill vote, I actually worried myself sick.

This is old hat, so I am going through the emotions quickly this time.

Grief: Crying on the train is oddly cathartic. Alone with your grief yet surrounded by strangers. It might be my favorite way to cry.

Self-Pity: I thought of big picture things I’d be giving up first. I have so many things to think about now that things have changed again. It’s like I had just put down my rug–it wasn’t even flat against the floor yet–and it was pulled out from under me.

Anger: When I got to work, I thought of trying to bum a cigarette from one of the smokers outside. Smoking is bad for your pancreas, and I am angry at it. Someone told me, “It could be worse.” That is the wrong thing to say to me right now.

Last night, when I couldn’t go to sleep because of the pain and tingling, I thought, “It could be worse. I could have cancer too. At least my scan was OK.”

Relief/Denial: In a way, knowing that the cancer is forever for me is a relief, because I’ll never have to go through hearing the news again. And again. And again. And again. This fourth time–four and a half if you count the refractory lymphoma not going away–will be the last time.


This afternoon, I had my MRI and there’s good news: there were no tumors and my ablation spot is healing nicely. Phew! I celebrated by going to a cycling class.

My neuropathy is making my feet tingly and cramp up, but I’m going to try to not let it get me down. I have some treatment options and I’m trying to get as many tests out of the way before this healthcare vote. I’ve had my life saved about three times. Maybe my winning the cat T-shirt means I have six more?


Yesterday, I went to a cat party to benefit a cat shelter and entered the cat-themed costume contest. At first, I didn’t expect to even be a contender, because in New York, there’s always at least one to two people who go over the top. (New York is a good place to feel like you’re failing somehow and there’s something more you can be doing, from your career to a costume contest.) As a cat lady, I have a lot of cat-themed items, so I wore my cat print dress that my mom made me, cat earrings, a cat necklace, a paw bracelet, lion shoes and a cat scarf, and I topped off my look with a cat purse and cat ears. Sure enough, three women were dressed in Victorian outfits, carrying lacy parasols and pushing a vintage baby carriage with two cats, who were also dressed up and wearing hats. But there were only five people in the contest and three prizes, so I got my hopes up a little bit to take third place. (An adorable little girl with a cat mask, a cat dress and cat paws was a shoo-in for second.)

When the faux Jackson Galaxy announced the winner for third, I was Michael Keaton putting my acceptance speech back in my pocket at the Oscars when they named the girl in the bouncy cat dress. I can’t control my face, so I hope I didn’t look too disappointed, but I know myself and I hope I never see any footage. Was the mention of my cat underwear too much? Did I not get enough applause? Did I seem catty while sizing up the competition? I’ll never know, especially since I don’t like being onstage or being in the spotlight, so I don’t remember things very well when I have to do something like speak in public. My mind actually blocks things out, so I don’t fully remember interviews or presentations or even sometimes instances when I have to speak to a group of strangers; once these events over, there are blank memory spots and everything’s in soft focus.

After my loss, I thought of my scan tomorrow to see if any neuroendocrine tumors have come back and I did what I often do when I deal with my scanxiety: draw a line between two unrelated things that have no bearing on each other. Since I lost this, does that mean that I’ll also be disappointed in the scan results? Or does this loss mean that I’ll have a good scan?

It doesn’t mean anything, other than I need to invest in a bouncy cat dress or train my cats to sit in a carriage and wear hats if I want to get anywhere in the cutthroat world of catlady competitions. I actually worry that I haven’t been worried enough about the scan, and so I’ll be devastated if the cancer is back. It’s my mind trying to convince me that I have some control when I actually don’t.

Tomorrow I sit in the MRI machine, and then I meet with the doctor a few hours later. Don’t have cancer, I tell my body. Stop it.

In the meantime, I’ve been trying to have fun and ignore my peripheral neuropathy as much as possible. I also decided to extend my time off from freelancing a little bit, so I can have less money but more fun. Freelance work doesn’t actually take up that much time, but it’s always at the back of my mind, like that Peanuts episode where Charlie Brown has to read War and Peace over winter break. (I reference this episode a lot because I feel like this pretty often, but I often get a blank stare, so I feel like I might be the only person who so vividly remembers this Peanuts situation.) Last weekend, after a Nine Inch Nails cycling class, instead of rushing home to do work, I got an ice cream cone wrapped in cotton candy and met with a friend in Central Park. After an early morning workout, instead of trying to get some stuff done on the computer, I had time to take a stroll with a friend to Union Square.

Friends have even commented that it seems like I’m doing a lot of fun things. I am. I’m having fun. I’m going to concerts, taking the ferry to and from work when I can, exploring the city, riding my bike, spending time in the community garden, and even taking some road trips. However, I still feel as if I owe people I’ve seen an apology: Sometimes I’m not always completely present and am preoccupied with the neuropathy. The pain and numbness always seem as if they are in sharp focus, and everything else is a bit blurred.

The neuropathy colors my experiences in strange ways. For instance, sometimes when it’s bad at night, I wear a different T-shirt to bed, because a plain T-shirt seems more appropriate if I have to go to the hospital than some of my goofy old tees (like my big thrift-store Playboy bunny logo shirt, my idea of sexy nightwear).

Every time I make plans, there’s an asterisk or a footnote “*if I feel well enough.” A few weeks ago, we went up the Hudson River valley to Kingston and Hudson, and I felt terrible. A sinus infection had been slowly building, and I was dizzy and my sinsuses felt inflamed and twitchy. I finally went to the doctor for antibiotics the day before we left. The infection seemed to make my neuropathy worse, and I felt so awful, when we met the innkeepers, I felt bad because they seemed nice and I was worried my ghost would haunt their property and I would miss my boyfriend if I were a ghost so far away.

At that point, my head felt so bad, I thought I would need to lay down when we were walking around. My leg felt like it was bent at a weird angle one morning and it took a little while to become unstuck. It feels sometimes like I have Barbie limbs and they will get stuck if I bend or strain them. Once the sinus infection started clearing up, I felt much better. Far from 100 percent, but not terrible. I’m down from five to six gabapentins a day to three to four.

I even worked out eight days in a row, which is huge. Not being able to work out has really bummed me out. I still have to take it pretty easy, but it’s something. I’ve been packing my social calendar while I’m feeling better. I’m always worried my health will be taken away from me. I’ve seen a few neurologists, and they are of the opinion that this will all clear up on its own. I am getting a spinal tap to rule out chronic inflammatory demyelinating polyneuropathy. If it is, then there may be ways they can reverse the damage. If it’s not CIDP, then hopefully it goes away on its own or it’s just something that flares up every now and then and I’ll deal with it. There are treatments in the meantime I can opt for, including Cymbalta.

I hope my MRI is good tomorrow. I hope I learn from all of this. Maybe I am. I just got a call that I won something at the cat party raffle and wondered for only a second if this turn of luck would change my scan results. It doesn’t mean anything, except that I’ll have a great pizza cat shirt by the end of the week.

At my very darkest times this winter, I would sometimes go to the waterfront and sit in the cold, looking at the water, willing myself to jump in. I didn’t, of course. The frigid, dark water was uninviting and I don’t like being cold or, I can imagine, drowning. Then I remembered I was already dying in two ways: the cancer was trying to kill me, and the chemo trying to kill bits of me—the cancerous cells. It was a darkly funny twist. Almost.

I acknowledge that it was a terrible thing to think of doing but I just needed to address the dark thoughts to dismiss them—confront the them and watch them retreat.

Now, months later, as far as I know, I am cancer-free. I’m really lucky to have had only one tumor that could be ablated. I’m so grateful. And yet…I don’t know what to say to people when they ask me how I am or how I’m feeling. My peripheral neuropathy has been steadily getting worse. The numbness, cramps, and twitching have been frustrating, and I start to feel sorry for myself. That is promptly followed by guilt when I think about how grateful I should be about the tumor removal.

I’ve always wanted to get through a bout of illness and be better again, and just be done. Now when faced with possible chronic pain, I’m disappointed. I’ve been trying to put on a brave face, and I think it’s only recently when that brave face seems more like a mask that I’ve had to examine the mess that’s underneath.

I’m kind of a mess.

I also feel like I owe everyone an apology. I’ve been spacey, possibly from the gabapentin or the neuropathy. I owe people thank-yous and emails and texts and lunches and times-we-said-we’d-get-together-but-haven’t. Sometimes all I can do is stare out into space, and other times I am obsessively Googling my symptoms, looking for something new on the same peripheral neuropathy sites I’ve visited before.

I also owe the people who I have spoken to in the past few weeks or few months apologies for maybe seeming distant or like I’m not able to follow the conversation. I sometimes use the wrong words and have to stop taking to cast around for the right phrase; sometimes I’ll give up trying to find the right word and let my sentence trail off. Sometimes I open my mouth to say something but just don’t bother.

I sometimes forget what I’m talking about while I’m actually talking and so I have to use context clues—the words coming out of my mouth. What was I saying? I wonder, scanning the face of the person I’m conversing with for confusion. Why am I talking about tiny dinosaurs? That doesn’t even make sense. This person should probably find someone better to talk to.

I’ve been trying to seem as outwardly normal as possible while grappling with a lot of weird physical sensations. Sometimes it feels like I’m moving through something heavy, or like I’m out of sync with everyone else, talking too fast or too slow. Sometimes I feel as if a needle has jabbed me in the face. My legs go numb. I wake up with arms that are completely asleep. Sometimes I wake up because of a calf cramp or sometimes with sore calves from them cramping in the middle of the night. When it’s really bad, I can see my toes wiggle from side to side and see the twitching under my skin. I bite the back part of my tongue and I’m not sure why. The nerves in my face feel as if they’re subtly moving. I get an ache in what feels like the middle of my bones. I sometimes get a pain in my left ear.

I always feel as if I have a subtle electric current running through my body.

It’s not the pain that’s unbearable; it’s the fear. I’m almost always scared. I am almost never relaxed.

Right now, I have a pins and needles sensation in my feet, which are also twitchy. I have weird sinus pain and the optometrist says my eyes have been cloudy because of inflammation, but I’m not sure if it’s related or not. It feels like the nerve fibers in the back of my legs are going pop-pop-pop,  like popcorn is being made inside my legs and causing tiny twitches when they hit the outside of my limbs.

Phew. I needed to get that out. I haven’t known what to say when people ask me how I am. I usually say something about feeling way better after the ablation but mention that my neuropathy is getting bad. It’s one of the reasons I haven’t posted a blog in awhile. Everyone wants a happy ending, and I didn’t want to spoil it.

As for face-to-face interactions, I feel like I can’t have a normal conversation with the ebb and flow of words. I just have to spew out words quickly before I forget them and lose my momentum. I also feel like I’ve run out of things to say. I’ve said everything there is to say in my lifetime; I didn’t budget my words and now I’ve run out and just have to repeat myself indefinitely. Mostly I talk about cats. I feel myself brightening when the subject turns to cats because it’s a subject I don’t have to think too deeply about. Talking about my kittens’ antics is more of a party conversation than how now that I am not expected to die as soon as I thought, I feel panicked and guilty and worried I’ll be plagued with chronic pain for the rest of my life. Plus if I forget what I’m talking about, the context clues are easy to follow—tails, whiskers, soft fuzzy bellies, cat birthday parties etc. (Speaking of cat birthday parties, I recently found myself talking to someone else who threw a birthday party for his cat, and though we both laughed and said we of course had other reasons to throw the parties, there is really no way to say that you’ve had a birthday party for your cat without really sounding like a weirdo, even when you are talking to someone else who has hosted a cat birthday party and you are comparing cat cake photos and you realize you both own the same sweatshirts with cat ears on the hood and a special pouch for a cat.)

I’ve also felt like a failure. (Not because I threw a cat birthday party; that’s an obvious success). It’s strange, because I’ve been pretty content with my life until recently, and I’m not sure what’s been making me so personally unhappy. Sometimes I still can’t believe my luck; I’ll be riding the ferry to work on a beautiful day and I feel like throwing a hat up into the air, Mary Tyler Moore-style. Yet increasingly I find myself comparing my life to others’ lives and coming up short. I think the cost of cancer hit me—not only financially and physically, but the realization of time lost. Four years have passed, and other people have done things—have had children, for instance, while I’ve had cancer. After a lot of time spent slogging through treatments and tests, keeping my head down while trying to keep my chin up, I’m looking around and wondering what happened to these years.

I’m jealous of those with good health. I’m jealous of my previous healthy self, and I resent her for changing into this.  Everyone seems happier and better at everything. I don’t begrudge others their happiness, but I feel as if I’ve failed in trying to really find my own.

I didn’t used to have many regrets, but now I find myself thinking about things I should have done differently when muscle twitches wake me up in the middle of the night. Yet I think about all the kindness I’ve received from friends (and even strangers) and I think that I must have done something right. I’ve surrounded myself with good people and that, I think, is one of the main keys to happiness.

Then why am I so miserable? Even with so many supportive people in my life, being sick and being in pain is isolating. It’s a personal thing, between your mind and your body. It’s consuming. I’m someone in pain instead of the person I’d rather be. I’m afraid to stray too far from home or make many plans. Most of the things I used to do and ways I would have identified myself seem to no longer apply. I’ve lost myself.

I’m mainly someone with peripheral neuropathy who is worried as to why it’s getting worse. I’ve been taking a lot more gabapentin to keep the symptoms at bay. One neurologist assures me that I’ll probably get better, that my nerves are oversensitive and will calm down. December’s MRIs, right after the shingles diagnosis, were normal, as are my blood tests. My EMG tests, where they test the electrical signals in the nerves, are a little off but haven’t gotten any worse since early this year. A biospy showed small nerve inflammation and nothing more. This is all good news, and yet I don’t know why I have so much pain, numbness and cramping, and why it’s been getting worse. There is one more test: a spinal tap to look further into the possibility of demyelinating neuropathy. (Before that happens, there needs to be a blood test that has to have the correct codes so we don’t get charged the full price from Quest, so I’m not sure when that will happen.) I’m also panicked because of the healthcare bill; I’m on a deadline to get test done before the unknown and it doesn’t look good.

For now, I’m trying to get the pre-spinal tap tests scheduled. (Also, I’m going to watch the movie. I know it’s crazy that I’ve never seen it.) Instead of working to create the illusion of keeping it together, I’m going to concentrate and maybe actually trying to pull it together. Not all of it, just some.

In the meantime, when you see me, that’s why I might seem out of it or forgetful. If I seem like I’m having trouble with a normal conversation, just ask me about my cats.

I was released from the hospital yesterday and celebrated my freedom by taking a long afternoon nap underneath a kitten. I experienced the giddiness that comes from being released from the hospital on a pretty spring day and the fatigue that accompanies the realization that doing well in the hospital doesn’t quite mean the same thing in the real world. On the way home, the colors seemed too bright, and the post-hospital cab rides always seem to jostle my tender organs around.

Being agile and mobile in the hospital—able to walk unimpeded by an IV poll to the ice machine—isn’t the same thing as being able to do a commute. I don’t know that I’m ready to be among the well. As we crossed over the Brooklyn Bridge, I crankily surmised that I would be released and ready to embark on my next stretch of wellness only to be taken out by a tourist’s falling iPad from the pedestrian walkway.

The kitten makes peace with this toy cat.

The kitten makes peace with this toy cat.

My hospital roommate was recovering from seven hours of surgery and her side of the room was often full of her family and lifelong friends; it filled our room with merriment and goodwill. Since my hospital stay was so short, my support was virtual but no less important. People sent so many nice well wishes, including a friend who sent a pic of her holding a “Get Well Josie” sign at the top of the Coachella Ferris wheel. I also came home to find some fun gifts. A friend had sent a Feisty Pet, a black cat, last week and he accompanied me to the hospital. Our actual black cat seemed a little concerned that this new friend would eat his food, but eventually the real cat made peace with the toy cat. Friends left a candle and a porcelain cat tray as a welcome home gift, and another friend stopped by with a pin, earrings, tote and a fun David Bowie card. My boyfriend’s parents sent a cat card and cat socks.


Fun recovery gifts.

I had hoped to be back to work by Wednesday, but I am going to see how the fatigue goes. I frantically cleaned, finished some freelance work and took care of work things so I could potentially have a few weeks to recover if I needed them. Right now, I’m worried I’m going to get a post-procedure infection and keep taking my temperature and checking on any pains that I have. I’m dealing with a lot of numbness and neuropathy, so I’m a little bummed to not feel better right away. I hope to get rid of some issues as I heal.

Applying a warm kitten when needed. Cats never seem to feel as if they should be doing something else when they are relaxing.

Applying a warm kitten when needed. Cats never seem to feel as if they should be doing something else when they are relaxing.

It’s a strange feeling, however, relaxing without the accompanying guilt that I should be doing something else. This guilt has been a constant companion, particularly in a city of achievers and where you are expected to have a side hustle. I have things I could be doing, but nothing pressing. Even the community garden blog is up to date. I read a book yesterday afternoon as I always think I will but never do. I had time this morning to do important things like vote for my top 25 Cure songs.

Now that I’m released, I am thinking again of a book I read recently: My Name is Lucy Barton by Elizabeth Strout. The opening paragraph resonated with me, reminding me of my monthlong hospital stay for my stem cell transplant: “There was a time, and it was many years ago now, when I had to stay in the hospital for almost nine weeks. This was in New York City, and at night a view of the Chrysler Building, with its geometric brilliance of lights, was directly visible from my bed. During the day, the building’s beauty receded, and gradually it became simply one more large structure against a blue sky, and all the city’s buildings seemed remote, silent, far away. It was May, and then June, and I remember how I would stand and look out the window at the sidewalk below and watch the young women—my age—in their spring clothes, out on their lunch breaks; I could see their heads moving in conversation, their blouses rippling in the breeze. I thought how when I got out of the hospital I would never again walk down the sidewalk without giving thanks for being one of those people, and for many years I did that—I would remember the view from the hospital window and be glad for the sidewalk I was walking on.”