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 I didn’t answer because of the great outdated no-phone sign in the waiting rooms showing a ’90s-style cellphone.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.”

Waiting to leave the hospital is nothing new to me. I am mentally ready to leave. I was supposed to leave yesterday, but my potassium was too low and would put me at risk for a heart arrhythmia. This morning the doctors said they wanted to check my potassium and also do an ultrasound because my hemoglobin had dropped and they wanted to make sure that I didn’t have post-procedure bleeding.

I was wheeled down for an ultrasound, and I think it went well. In yoga classes, they often say to listen to your body, but an ultrasound really listens to your body. It sounds like an ocean with your heart as an approaching tidal wave.

Today, my numbness is bothering me.I slept pretty soundly. I woke up this morning hooked up to an IV that I don’t remember getting hooked up to. I just got word that my potassium is on the low side of OK, so I should be getting out soon.

I was all set to go home today—my boyfriend had even taken my suitcase home—and I found out that I am spending another night. I’d packed up all my things and ordered lunch early so I would be ready to leave as soon as my boyfriend arrived after 1 pm. I’d seen the team in the morning, and the pharmacist, and my doctor stopped in to see how I was doing. When they took my blood, however, my potassium came back as really low and they couldn’t let me leave since such low potassium can put you in danger of a heart arrhythmia. Unfortunately, the fastest they could run the potassium IV drip is about an hour and potassium burns, so it had to be slowed down to stop hurting my veins so much. I was set for two bags of potassium, but I had still hoped to get out today. The tests are going to take a few hours, however, so they are going to wait until tomorrow to send me home.

In a way, it’s just as well. My boyfriend has plans tonight and as much as I want to see the cats, I wasn’t really looking forward to being home on my own (mostly because I can’t work the TV). Also, I’ve been feeling a little weird; my sinuses felt tingly and my neuropathy was acting up and my face felt numb, so I may as well be here feeling odd than home alone and worried. Hopefully, my potassium levels are better tomorrow.


I’m still a little groggy, but I wanted to give an update about yesterday’s procedure, though most of you probably saw my boyfriend’s social media update. I’m wary of good news, so I’m almost reluctant to share it, but yesterday I had the best possible outcome. There was only one tumor, so the interventional radiologist was able to ablate it, using heat to get rid of the cancer cells. She showed me before-and-after pics of the tumor and of the area now that it is burned out. I can’t believe it still. So…that’s it for now. I’m going to be closely monitored, of course, to make sure that they got it all and that it doesn’t come back.

The other scenario was that if they found multiple tumors, they would do an embolization and cut off blood supply to the cancer cells. Again, I would have been closely monitored, but there seemed to be more likelihood that I would have to come in every now and then for a touch-up. Originally, the plan was to do both if there was only one tumor, but there was concern that it would put me at higher risk for infection. I’m already at risk for an abscess because I don’t have the natural bacteria barriers after my digestive system was rerouted during last year’s Whipple procedure.

I go home today. In the meantime, we’re going to keep an eye on my for risk of infection, and if that happens, I get a surgical drain. My boyfriend and I are really squeamish, so we’re hoping this doesn’t happen. These past four years have really tested and strained the boundaries of our collective squeamishness. I also have to see how I’m doing as far as recovery. Even though I don’t have an incision, the doctor explained yesterday that it’s an internal surgery so it’s more involved than biopsy recovery.

I am a little bummed I can’t attend the March for Science for Earth Day today. Science is important not only for the planet but for individuals as well. Science saved my life yesterday and repeatedly has saved my life. Accessible and affordable healthcare is important as well, and that is also in danger.

Last night, I ate without feeling weird and nauseated immediately after. I feel as if something that was trying to kill me has been removed. My potassium and blood pressure are low, but I feel better. I hope it’s not just the effects of the anesthesia. I would like to get my weight back into the nineties soon. I thought our scale was broken when 87 or 89 would show up. I had been progressively feeling more terrible, and I’m ready to feel better.

And then what? If I don’t sound excited, I think it’s because I’m in shock. I realized when I was presented with the possibility of having a longer reprieve from this cancer than I expected that I had been mentally preparing to die. Now I can tentatively look to the future.

I had just been complaining about the off-the-shoulder and "cold shoulder" cut outs in all the tops this spring, and I see that even these hospital gowns have the cold shoulder look. Also, I got this nifty hat. You can see from my smile that I was really ready to have this tumor taken care of!

Pre-procedure: I had just been complaining about the off-the-shoulder and “cold shoulder” cut outs in all the tops this spring, and I see that even these hospital gowns have the cold shoulder look. Also, I got this nifty hat. You can see from my smile that I was really ready to have this tumor taken care of!


At a friend’s event for a book about her family’s genetic disorder, she talked about how she often thinks she’s having a stroke. “So sometimes you’ll be talking to me, and I think I’m having a stroke,” she said.

As someone who suffered from anxiety, I have had my share of trying to keep it together outwardly while inwardly wondering if I’m dying. I have had strange symptoms since October, but especially within the past month, I’ve felt strange. I’ll be talking to someone and suddenly get a sharp pain in my left calf or my toes will go numb. I’ll be on the train and I get a jolt of pain in my side or I stand up too fast and feel like I might pass out because of my low blood pressure. Oddly, my main concern isn’t actually passing out or the pain, but ruining dinner out or being the maligned sick train passenger who causes delays. My last thought, if I’m lucky enough to have a peaceful end many years from now, will probably be, “I hope this isn’t too embarrassing.”

For possible work leave, the doctor had to fill out a form listing why I might not be able to return to work for a bit, and she listed all my current symptoms: fatigue, diarrhea, nausea, anorexia (the medical kind where you just don’t feel like eating), weakness, pain. I have been trying really hard to keep things normal, but seeing it all listed made me think that I’m in pretty bad shape. Plus, I have the neuropathy and an eye infection, and just general inflammation all around, it seems.

I’ve been meaning to update this blog for awhile, but last night I ended up doing the dishes and cleaning a bit. What they find today will determine how the rest of my life could go, or at least the next few years. If there is only one, then I can get the ablation; there was a change of plans to avoid infection, so they would no longer also do the embolization. If they discover more tumors, then I just get the embolization and I would have to keep getting those done. It’s almost always bad news, so I don’t want to get my hopes up. Fingers crossed that I can get the ablation and avoid subsequent infection. I’m in the hospital for a day or two and then I can return home for more recovery. Either way, I should feel better after this. Thank you for all your kind thoughts and words!