Whenever I’m feeling better, I don’t have as much time to blog. Work and freelance projects need to be completed, my garden plot needs attention, workouts are booked—and, of course, there’s fun to be had. Whenever I feel overwhelmed, I think of the alternative that I’ve experienced while being sick—not being able to work, having to stay away from soil and gardening, not having the energy to do fun things. I’ve been so busy, I never gave an update on my prognosis going forward.

Basically, there’s a 60 percent chance that this cancer will come back within the next five years. When it does, it will probably come back in several spots in my liver. It’s too hard to get out at that point, so then I’ll just have cancer, and they treat it like a chronic disease with medication. It will buy me decades, they say. Since 60 percent is kind of in the middle, it’s not enough to give me preventative drugs and have me deal with the unpleasant side effects.

Steve Jobs’ experience with pancreatic cancer makes a little bit more sense now to me. He also had a neuroendocrine tumor and had a Whipple procedure. He eventually died after a liver transplant, so I assume that if the tumors came back to his liver, he opted for a liver transplant. (Since I’m not a billionaire or Frank Underwood, I don’t think this option is open to me, and I’m not sure if it’s the best option anyway.)

I haven’t thought about it much, because I haven’t wanted to. I wasn’t worried about the first scan, because it was so close to the surgery. Now that my second scan is coming up on Friday, I’m very worried. I want more time of being “normal.”

On Sunday, I was at the community garden, weeding the brick path, when I disturbed an ant hill. I brushed off the ants, but one got stuck in the worn fabric of my gardening gloves. It looked like its head was stuck in the threads and it frantically tried to free itself. I tried to help the ant, and for a while, I wondered if it was more merciful to crush it instead of possibly crushing a leg or antenna. I felt guilty: If only I hadn’t come to the garden that day, the ant wouldn’t be dying. After several minutes of both of us working together, however, the ant was free, and I was so relieved.

So yeah, I’m in a weird place emotionally.

For me, the question of the cancer coming back is not “if,” but “when.” People tell me to think positively and to focus on the 40 percent, but I’m a pessimist and I believe in trying to prepare for the worst even as I secretly hope for the best. The odds haven’t exactly been in my favor in the past. I was supposed to have six months of chemo for Hodgkin’s lymphoma, which didn’t go away, so I had a stem cell transplant. Having a neuroendocrine tumor is rare, and having two types of cancer is pretty rare too. (Our late kitten’s condition of FIP was also relatively rare.) I keep expecting a rare good event to balance things out. I’m genuinely surprised when I don’t win the lottery.

Instead of winning the lottery, I would settle for not having the cancer come back. Definitely. You don’t get to bargain, but that doesn’t stop me from trying, and hoping, even as I try to steel myself for the worst.

Yesterday I found myself back in the chemo chair in a familiar treatment room at Memorial Sloan-Kettering Cancer Center to receive a dose of Reclast to treat my osteopenia, decreased boned density that’s a long-term side effect of my Hodgkin’s lymphoma treatment and radiation. (It was one of the fun facts I learned right around the time I found out about the neuroendocrine tumor so this was put off until after my Whipple procedure.)

Shortly after the nurse hooked up the IV with saline, I felt a little dizzy. Suddenly, I couldn’t breathe. My head felt like it was filling of fluid and about to burst, and I had to move it from side to side. I felt like I lost control of my body. I was sweating and nauseated. My eyes couldn’t focus and everything was blurry, like my eyeballs were in a cocktail shaker.

A panic attack. My first in nearly 10 years. It was even worse than I remembered.

For those who haven’t had a panic attack, it feels like you’re dying and losing your mind at the same time. As I’ve said before, panic attacks are really misunderstood. Some people say things like “I was totally having a panic attack,” but unless you feel like your body and mind are rebelling against you at the same time and you have no control, then it’s probably not a panic attack. It irritates me when people say they were having a panic attack when they were just freaking out the same way it bugs me when people often used to say they were “literally dying.”

Well-meaning people who try to understand will try to soothe you and remind you that there’s nothing to worry about and to be calm. That is nice of them, and it’s true, but it doesn’t help much in the moment. Panic attacks aren’t really necessarily induced by an obvious stressor or worry, even—it’s the body going into fight or flight mode for seemingly no reason at all. One moment, you’re sitting around waiting to get your tire changed and then next moment you feel like your body is shutting down and your brain is trying to flee your skull. When I had my first panic attack more than 15 years ago, I developed panic disorder, meaning that I was so afraid of losing control and having a panic attack that my phobia kept inducing them. It’s essentially a fear of fear, and it becomes a self-fulfilling prophesy, a cycle of panic. After a few years of therapy, medication and research, I finally left panic attacks behind, until yesterday.

I knew what was happening almost immediately. “I’m sorry, but I think I’m having a panic attack,” I told the nurse as I started to gasp for air and roll my head from side to side. “I feel like I’m going to pass out.” She asked if I needed crackers, but then the nausea set in. “I feel like I’m going to throw up.” I remember her putting a pillow behind me and asking if I could move forward, but at that point, I felt like I had no control over my body, and I couldn’t move. After asking what she could do, I think I told the nurse I just had to wait it out. I can’t quite remember. I know she told me that we would wait and that I should call her with my button when I was feeling better.

I know I cried. I felt helpless and I was annoyed with my body for betraying me yet again.

Logically, I knew I would be fine. There are worse places to have a panic attack than a room with your own nurse. I didn’t pass out, but in a weird dissociative state, I don’t remember things. I have no idea how long it lasted—somewhere between 10 to 15 minutes and an eternity. When I started to get my bearings back, I realized I had a plastic bedpan in my lap in case I threw up and I had been wrapped in a blanket at some point.

Even though I knew I would be OK, getting through it was completely miserable experience I could go another decade without—the feeling of losing control of my body, feeling like my head was filling with sloshy liquids, the inability to focus my eyes. A panic attack isn’t all in your head, the way some people think it is. It’s a physical reaction that is out of place. Kind of like an allergic reaction. Your body thinks it’s helping you, but it’s actually creating a problem.

I was nauseated so my body could rid itself of food and flee quickly. The vision changes, the increase in heart rate, the constriction of muscles were all to prepare me to escape danger. It’s something that might be helpful if I were running from a mountain lion, but not necessarily of any use to me when I am hooked up to an IV.

Afterwards, I was drenched with sweat and had a headache. My eyes ached from feeling like they’d been removed from their sockets, inserted into a snow globe and shaken up. When I stood up later, I was unsteady and my legs were wobbly.

Though part of what makes panic attacks so maddening is their random and unwelcome surprise appearances, this one does kind of make sense. I was in a place where I felt safe, but those chemo infusion rooms hold a lot of memories. They are where I started treatment years ago for what I assumed would just be six months. Until I arrived yesterday, I had thought the Reclast would be a shot, and I didn’t expect to be hooked up to an IV. I could see why being there, hooked up to an IV again, my body decided it wanted to flee. After all, the last time I was in that situation, I was essentially being poisoned, even it was for my own survival.

I’ve also said that when you have cancer, people understand what’s wrong to a degree, and offer you sympathy, but when you have a panic attack, people often just tell you to calm down and you feel like a crazy weirdo. Both are instances of a strange body betrayal—a disconnect between your physical being and your will. Both can make you feel helpless, in different ways.

This time, I had the luxury of having only a nonjudgmental nurse as a witness, and I was already at a medical center, a comfort when you feel like you are dying. I hope my days of panic disorder are completely behind me.

I grabbed my bedpan to take with me on the train, figuring that I could put it in my lap if I felt queasy again. Also, maybe people would give me a little bit of elbow room if I had a bedpan, but it’s hard to phase people here.

After several years of my squeamish self enduring tubes, IVs, needles, catheters, surgeries, transfusions, transplants, and all sorts of procedures without panic, I was finally undone by an IV full of something to help me uptake calcium for bone health. At least it seems my body has a sense of humor.

It’s been an emotional and busy few weeks, full of highs and lows. Today, we picked up Charlotte’s ashes. The vet gave her only two to three weeks in April when she was diagnosed with feline infectious peritonitis (FIP), an always-fatal condition, but she was such a fighter that she lived more than a month beyond the initial prognosis. We started to make some long-term plans for her, since she was holding steady and we couldn’t leave her alone as she couldn’t move very well. On Memorial Day weekend, we took her to the community garden, where she explored and sniffed the grass and flowers. Fearless as ever, she even tried to check out my friend’s big dog.

Charlotte in the community garden.

Charlotte in the community garden.

After that weekend, however, her mobility and health declined. It seemed like she was in pain, and she would grind her teeth and scratch at her head. When my boyfriend moved her from the couch one day, she gripped his arm tightly, and he knew that she was saying it was time. We had to say goodbye to her on June 7. A fighter until the very end, the vet had to give her two injections to stop her heart.

Maceo and Charlotte

Maceo and Charlotte

Charlotte was an exceptional cat from the moment we met her in January, as she played in her cage at a local pet adoption event and tried to steal a toy from the cage of the neighboring cat, who was not amused. We fell in love with Charlotte immediately. She was curious, fearless and kind. She comforted our cat, Maceo, during his last days, and she was a sweet and invaluable companion to me during my weeks of recovery after my Whipple procedure.

charlottesleepingsteveMy boyfriend had a special bond with her and provided special care for her during the last few months of her life, making sure she had special food and that she was comfortable on the couch. We used the stuffed pancreas that friends gave us as a little body pillow for her so she could prop up her head. Since she couldn’t jump on or off the bed, we moved our mattress to the floor so she could snuggle with us—but she cuddled mainly with him, and I would awake to see her little paw draped across him or her tiny body curled up in the crook of his arm. Charlotte would always look around for him if he strayed too far from her.

Even while she was sick and couldn’t move very well, she would still play as much as she could. She caught a small bug and batted at the cat dancer. Her brother, Ziggy, was twice her size and though we discouraged him from playing rough with her, she could still hold her own. (Ziggy acts tough, but he’s a scaredy cat.) Charlotte was always brave, right until the very end. Because the FIP stunted her growth, she was such a little kitty, but she leaves behind a huge hole in our hearts. Whether it’s 16 years or 6 months, it’s never enough time, but a kitten death is especially sad. She will miss out on so many adventures with our little remaining family of three—there are birds to watch, toys to play with, bugs to eat. I miss seeing the black bottoms of her little paws as she slept on the couch, and her spotted tabby belly and her beautiful whiskers, which were black near her face and then changed to white at the ends. sleepingcharlotte

We were happy to have more time with her, and gradually got used to having to always be home with her and making sure she was OK. The anguish-ridden first weeks after her diagnosis turned to a new, bittersweet normal and her death eventually seemed far-off and unreal until the last week as her condition declined. We didn’t want to see her suffer but we didn’t want to let her go. The day after we said goodbye to Charlotte, I had to travel to Cleveland to help with my mom’s recovery from hip replacement surgery. Getting away helped me put off dealing with the emptiness of the apartment without her. Of course, there’s her brother, Ziggy, who fills the apartment with his big personality, as he runs around full speed, plays fetch with his toy mice, and ccharlotte1ontinues to indulge his fascination with all liquids—poking his head into a glass with ice or running into the bathroom after someone has taken a shower to watch the water droplets on the curtain. The week also had two weddings, and celebrating joyful occasions provided much-needed balance. I feel like I’ve experienced the gamut of emotions within the past few weeks. I hope that my mom’s surgery is the last part of the sickness/death cycle that has been occurring since last September.

Charlotte’s ashes now sit on the shelf along with Maceo’s and Akasha’s ashes. Her place in our hearts is still a raw from her loss, but there is also joy at having known such a fine cat, albeit too briefly. Tonight, we are going to see the Cure at Madison Square Garden, and we hope “Charlotte Sometimes,” the song for which she was named, will be on the setlist tonight.

Charlotte Sometimes, we will miss you always. Rest in peace, sweet kitty.






As I write this, Charlotte is curled up by my legs, asleep on a blanket. Since September, I feel as if there has just mainly been sickness and death around here. Akasha died in late September, then I got pancreatitis, then Maceo died in January, shortly after I got my second cancer diagnosis and after we adopted the two kittens. As soon as I recovered from my pancreas surgery, Charlotte fell ill, and now, unbelievably, we are trying to make our sweet kitten’s last weeks happy and comfortable ones, after she was diagnosed with a fatal condition called FIP (feline infectious peritonitis).

Charlotte is doing OK, though she can’t walk very well. As when I was sick for months, sometimes it seems as if it’s always been this way, and it’s hard to imagine what it was like to be well. The comparison would be too hard, pitting the memories of 100 percent wellness against the current reality. It’s only been about two and a half weeks, but sometimes I can barely remember the Charlotte who scampered around the apartment or jumped for toys. I can’t reconcile that with the current kitty who sleeps most of the day or pulls herself shakily across the floor. Yet her spirit is the same; her eyes still alert. Weak as she has been, she located and caught a stray bug in the apartment last Sunday. Her ears perk up at her name.

I will remember her as she was later, when it stops hurting so much. I know it will never completely stop hurting, but I also know that, with enough time after a death, the pain of loss turns into a gratitude for having that person—or cat—in your life, even when the time with them seems too short. Even when the life itself seems unjustifiably, unbearably short. I can’t believe Charlotte has been with us for only about four months, and she’s been alive for only eight. I asked about drugs and treatments, but was told they are expensive and not proven to be effective. I can’t stop this disease from taking our sweet Charlotte no more than I can stop time from inching forward.

When we found out she didn’t have much time, we pretty much cancelled most plans so we could be with her. Since the FIP makes her wobbly, one of us always has to be home to watch her. For the past several weeks, one of us has slept on an air mattress to be with her since she can’t jump on the bed, but this week, after pumping up the air mattress at night, we would awake on the floor, the mattress around us in a deflated heap. Since the leak couldn’t be located, the regular mattress is now on the floor, off the box spring, so Charlotte can still get down if she needs to and she still has someone to cuddle with at night.

These weeks have been bittersweet. Seeing her up and about is heartening, while seeing her struggle to move is heartbreaking. Ziggy tries to be helpful at times, but he tends to bathe her kind of aggressively—as is his way with everything he seems to do in life. Ziggy also has been curling up with his sister and cuddling more with her the past few days, and it’s sad to think that they won’t be able to grow up together as we thought they would, as lifetime companions.

I don’t want her to suffer but I don’t want her to go. I stubbornly want her to get better. The vet gave her two to three weeks. We are entering week three. When she curls up in our arms and purrs, we’re at our happiest. It’s during these moments I will the impossible, for time to stand still. I want to keep her like that forever, a happy purring kitten, in my arms and heart.


Aside from my recent goofy photo blog, I haven’t written much about the two kittens that we adopted in January. Ziggy and Charlotte have been bright spots the last four months among so much bad news: our 17-year-old cat Maceo’s death, my pancreatic tumor/cancer diagnosis, and the Whipple surgery and recovery. I thought I would have years to write about them, but I found out Friday that this assumption was wrong. Our little kitten Charlotte is very sick most likely has only a few weeks to live, if that.

I can’t believe I’m writing another farewell post to yet another cat. I had partially held off writing about them out of respect for Maceo and Akasha, who died in September at the age of 16. Shortly after we adopted Ziggy and Charlotte as four-month-old kittens, Maceo died. Even though he was 17, it was still a shock. Saying goodbye to Charlotte is painful in another way—she’s just a baby. If years with our old cats didn’t seem like nearly enough time, only four months with this sweet kitten is supremely unfair.

About a week and a half ago, I noticed she wasn’t putting much weight on her front legs and couldn’t walk very well. Then she slid across the floor with her front paws out, propelling herself with her back legs. We took her to the vet the next day, and X-rays showed no fracture; they thought maybe she strained herself and gave her an anti-inflammatory shot. For a few days, she seemed like she was recovering, but when she started to look weak again, she went in for blood tests, which didn’t show toxoplasmosis, so the vet tried another anti-inflammatory shot. By this past Thursday, she didn’t improve, so the vet recommended that we take her to a neurologist.

My boyfriend called me from the neurologist’s office on Friday and as soon as I heard his voice, I knew something was really wrong. After doing some tests, the vet thinks it’s FIP (Feline Infectious Peritonitis). From what I understand, it’s caused by feline coronavirus, something that many kittens are exposed to, and a mutation causes only a small percentage to develop FIP. Unfortunately, this includes Charlotte, and FIP is always fatal. The disease is affecting her brain and her coordination, and the vet estimates she can live about three more weeks. Once she no longer purrs or appears to enjoy life, then that’s the end.

In the meantime, they prescribed steroids to help make her more comfortable, though we haven’t seen any improvement. She’s been very weak, and it seems like she’s declining quickly. Seeing Charlotte propel herself across the floor using her back legs breaks my heart. Seeing her so weak hurts. Seeing a little tremor in her tiny body wrenches my guts—the ones I have left after the Whipple. Still, she seems to want to be by us and cuddle, and she still purrs in our arms.

Last night, I slept on an air mattress because she can’t get up and down from the bed. As the motor to inflate the air mattress whirred, I held Charlotte, who looked alarmed and upset by the noise. I told her it would be OK. I felt like a liar. I hate that I can protect her from the non-danger of the whirring air mattress pump, but I can’t do anything to protect her from the disease that’s killing her. She doesn’t even know to be afraid of it.

The phrase, “You have cancer,” is among the most dreaded phrases in existence. But even worse is hearing that a loved one is sick or dying—especially if you’re in some way responsible for protecting them from harm. She counts on us to protect her and there is nothing we can do. (One of my long-time hesitancies about having children lies in the vulnerability. To me, having a child would be the equivalent of having all your nerve endings packed into another being and then sending it out in the world. How do parents live knowing that they can’t protect their children from the pain that comes with just existing? I have two creatures I keep in my apartment and never let out and I still manage to be a wreck sometimes.)

I’m a worrier. And I’ve been worried about Charlotte not growing and her not seeming as energetic. This time, I was right to worry. As frustrated as I am that there’s nothing I can do for her, it’s somewhat comforting to know there’s nothing I could have done sooner. I couldn’t have prevented this or done anything differently: the outcome would have been the same.

I have tried to make those desperate internal bargains we all make. When I’ve told some people about Charlotte, they’re surprised so much bad luck can happen at once and say I deserve a break. I bought a lottery ticket today in case that’s true. Immediately after I bought it, I found myself promising I would rather have Charlotte live than to win. I was trying to bargain somehow, with my imaginary winnings.

Aside from my fruitless bargains, I tell Charlotte that I love her and try to make her happy and comfortable. It doesn’t seem like enough. No matter how much time you have—whether it’s with a kitten or a person—it never feels like there was enough time to show them how much you loved them. As hard as the Whipple recovery was, I am glad I got to spend so much time cuddling with her and with Ziggy.

Ziggy is laying across my neck as I type. He seems to grasp something’s wrong with Charlotte and he tried licking her. It is his preferred method of comfort. He also licked my face, which was sweet. Seeing Ziggy play by himself, without his sister Charlotte, also breaks my heart. As the size difference between the two cats grew—or more specifically, as Ziggy grew and Charlotte really didn’t—we’ve been trying to discourage Ziggy from roughhousing with her since she is about five pounds to his nine. I don’t know what any of us are going to do without her. Ziggy has known her his entire life, and in just four months, Charlotte has become an irreplaceable part of our lives. We love her so much. But with love, there’s just never enough time.


I’m finally, finally starting to feel closer to normal, a little more than six weeks after my surgery. (More on that soon.) I’m returning to the office soon, after spending the last several weeks working at home. As I adjust to the idea of getting dressed in the mornings and interacting with people again, I have been thinking about how office life will differ from working at home with two kittens.

Con: I will have to wear real clothes with zippers and buttons.
Pro: I can wear clothes with ties and strings without being jumped on and having someone try to bat at them.


Con: My co-workers will report me to HR if I rub their bellies.


Con: People at work will frown upon afternoon naps.


Pro: My co-workers will be less fascinated by my lunches.


Con: I won’t be able to do this with my pens.


Pro: My co-workers are less likely to run across my keyboard and erase my work.


Con: When I tell people something surprising at work, they won’t look like this.


Pro: No one is likely to chew through my computer’s power cord and then look at me like this.


Pro: This won’t happen while I’m working.
Con: This won’t happen while I’m working.

Today was a crappy day. I mean that literally. Earlier, I found myself crouched on the fairly busy sidewalk outside a Quest Diagnostics trying to transfer poop from one sterile container to another. But my lowest point, mood-wise had been before that, when I knocked over the specimen container in a public restroom and spilled whatever clear test liquid was in the container into the sink. As I waited in the Quest waiting room for a new container, I cried and felt deeply sorry for myself.

The Quest test is because I’m not feeling any better as far as the digestive issues go. In fact, I feel a little worse. I’m a little bit thinner—to my high school weight, which looks ridiculous on a grown woman—and a little bit weaker. Most days, I feel sick for a bit in the afternoon, followed by some mild discomfort, and then in the evenings, it’s nausea followed by some sweating, sleepiness and two bouts of discomfort before I get hungry right before bed (but am too afraid to eat). It’s almost a routine by now. (Right now, for instance, it’s after dinner, so I’m trying not to throw up, while I listen to weird noises emanate from within.) I had been on the BRATTY diet (bananas, rice, applesauce, tea, toast, yogurt) and it helped a little bit, but not much. (Another low point of this past week was when I made myself a toast sandwich and put some mustard and a few pickles on it so I could pretend I was eating a real sandwich but that each bite was just the end part.)

Even though recovery takes six to eight weeks, after five weeks, I should feel better than I do. Hence the need for samples to check for bacteria or infection. I was told to get a sterile sample cup, which I eventually procured at a nearby urgent care. When I arrived with my sample at Quest, however, I didn’t realize I needed three samples, and Quest doesn’t want you to contaminate their bathrooms, so I was sent off with gloves and two more containers to divvy things up elsewhere—outside, at home, in another bathroom. Anywhere but there. So I found a public restroom, and then knocked over one of the sample cups, spilling the chemical into the sink. (I was careful not to contaminate that bathroom.)

Dejected, I returned for a new sample cup. Quest was closing soon, and I didn’t have time to find a new bathroom, so I stepped outside to make the transfer. Now I feel terrible about it, but at the time it seemed like my only choice.

I’m also getting pancreatic enzymes, which CVS doesn’t have in stock, because I might not be producing enough digestive enzymes. I guess this is fairly common after a Whipple procedure. They are hoping that the enzymes clear things up in a week or so. If I do have enough enzymes, though, and these are extra, then I’ll get abdominal cramps, something I’m not looking forward to.

I’m tired of being sick, and I’m worried that I’ll never feel better. I didn’t expect this setback. I don’t always feel terrible, but when I do, it seems like a long time. I’m worried that I’m becoming bitter. I found myself jealous of the people who were heading into restaurants to eat, or running errands, or anyone who wasn’t carrying a container of feces with them, really.

After the stem cell transplant a few years ago, I felt optimistic as I recovered, but this time, I feel like everything I want and everything I thought my future might hold is slipping away from me, especially with such a strong likelihood that this cancer will come back within five years. Instead of a house or a family or vacations, I see bills, debt, loneliness. And I see death, too, as a possibility. Of course, it’s always there, I suppose, for all of us, but the high chance of cancer for a third time definitely puts me at a higher risk for that—sooner—and for a lower quality of life. As it is, all the chemo and radiation from earlier treatment has nearly put me into osteoporosis, something I found out right before I had surgery.

I find that I’m unfavorably comparing myself to everyone—friends, acquaintances, people I read about in the news, even book characters. I’m jealous and I’m worried that will crystallize into bitterness, and that scares me, because I don’t know who that person is.

Of course, I’ve been spending a lot of time by myself—more, as it turns out, with this blip in my recovery, than I thought. I had just started to venture out and eat real foods when I started to feel bad a few weeks ago, and now I mostly stay at home. If you have posted a vacation photo, funny animal photo or something witty online in the past month, chances are, I’ve responded immediately. I’m not even worried that people will think I have nothing better to do, because I really don’t.

OK, that’s not entirely true. I started working remotely last week, and that has been good for me. And I have a freelance assignment with a nice far-off deadline. And I take a lot of photos of the kittens.

So I’ve had too much time to think, which has left me death-obsessed, angsty, depressed and broody—basically my teenage self. (I guess it’s not just my weight that’s regressed.)

Keeping busy is good, but I can’t overbook myself since I have to have time for my bouts of physical illness, whether I’m nauseated or need a nap after walking too much. In My Age of Anxiety, which I am still reading, the author talks about Robert Burton, who wrote The Anatomy of Melancholy, a giant tome he completed in 1621 that has everything to do with melancholy, as the title suggests. Anyway, this quote from Burton seemed appropriate: “There is no greater cause of melancholy than idleness, ‘no better cure than business.’”

So here I am: Spending too much time with myself is depressing. I think some things finally fell into place: the fact that I had two different cancers, and that it’s probably going to come back, for one. Oddly, that doesn’t upset me as much, since I have little control over that. It’s everything that I do have control over that’s bothering me, and I feel as if I’ve made a lot of mistakes that I can’t undo. I feel like I need to do something, yet I also am afraid to do anything. I feel like everything I do is wrong.

Tonight, as I waited for my post-dinner nausea to pass, I curled up with the cats and called my mom. As I told her about my day, she said something that surprised me. “I don’t know how to say this,” she said, “but I’m pleased and proud of the way you’ve handled this.” She also said I didn’t complain much, and that also surprised me: I complain mainly to my boyfriend, but she would be a close second, followed closely by this blog.

After feeling like a dealt with a lot of crap today, it was what I needed to hear.

I haven’t posted too much on my recovery, because it’s pretty boring and gross. It’s mostly sleeping too much or being in some sort of gastrointestinal distress. Honestly, it’s a lot of hoping to poop, or at least hoping to poop in some sort of normal fashion without a lot of drama. Recovery from a lot of major illnesses or surgeries reduces you to an infant, with an existence that revolves around sleeping, eating and pooping. This post won’t be graphic, but if you’re uncomfortable reading about digestive issues—and pooping—then you should probably stop reading.

Still here? Good. I myself have been pretty comfortable talking about my gastrointestinal tract and distresses ever since I spent a few months volunteering in Mexico in the summer of 1995 with a program called Amigos de las Americas. The nonprofit has chapters all over the U.S., where high school and college-age kids train for months and then go to various places in Latin America to volunteer in different projects. When I was a volunteer, for example, a few of the things you could do included going to Ecuador to vaccinate dogs, or go do educational things in Paraguay and Costa Rica, or go dig latrines in the Dominican Republic. I went to towns near Guanajuato, Mexico, to make estufas lorenas, stoves that were better for your lungs, and also to talk about dental health and distribute things to make cement floors that would be more sanitary. Most of us got a little bit sick while we were there, no matter how many precautions we took. After experiencing long bouts of gastrointestinal distress, you get pretty comfortable discussing it. Sometimes, now, I forget and say too much or maybe describe something too vividly and I have to remind myself that not everyone is as comfortable with discussions of bowel happenings. I mean, it’s not like I talk about it at dinner in polite company, but I definitely could talk about it at dinner in company not so polite.

I’ve had to allow my digestive system to learn how to work again twice, but this time, with all the re-routing and removal of organs/organ parts, it’s been much more intense. I have so much more respect for babies. No wonder they cry. Gas pain and the general woes of digestion and elimination are no joke. I have nearly been brought to tears. One of the doctors said that some people find the gas and gastrointestinal discomfort to be worse than the incision pain, and I agree. As an adult, it’s kind of humiliating to having your life go back to that of a baby. It’s not as pleasant and relaxing as it sounds. You really have to sleep a lot and devote so much energy to eating and then not throwing up or pooping too much and dealing with gas pain and momentous burps. Poor babies.

It’s been three weeks since my surgery and I’ve been getting impatient, but the doctor reminds me that it’s been only three weeks since my surgery. From the outset, they said full recovery takes six to eight weeks. I had hoped that by now, I would be able to eat with less drama, but I still have gas pain and extremely unreliable bowels. Today, I decided to take the train to the doctor’s office, since it was in the middle of the day and people would be less likely to jostle me or ram into my incision. (Also, I am cheap, and cabs are pricey.) I had my usual quarter of a bagel before I left, but then regretted it. I thought about getting off the bus and catching a cab but I’d already invested $2.75 on my bus ride.

Once I got to the doctor, though, I felt a little better. (One nice thing at the MSKCC offices of doctors dealing with these issues: the exam rooms have bathrooms attached, something that is welcome in many patients’ situations, I’m sure.) He says my incision is healing nicely and I need to be patient. I’m going to feel tired, he reminded me, because my body is healing and devoting all its energy to that, and not much is left over for me. The Whipple is a big deal, and I was sliced open and things were removed and my digestive system was rerouted, so I suppose it’s pretty amazing that recovery takes only a few months.

I’ve been trying to go off the Oxycodone and the laxatives, but it’s a tricky balance. So far, giving up laxatives haven’t been a problem, and I haven’t needed them at all. My doctor suggested I try to eat some Activia for my digestive tract. I still have periods of time when I’m pretty miserable without the Oxycodone, which seemed to have helped with some of the gastrointestinal issues.  I’ve been a little nervous about the Oxycodone. I don’t like the idea of taking it, though I never have any of the “fun” that people associate with “good drugs.” I had to take a big dose when I was fending off a pancreatitis attack about a month ago, and I felt better for about a half an hour and then I threw up.

Against my better judgment, I took the train home from the doctor’s office, and of course, the coffee I’d unwisely had while I was there hit my bowels while I was in the bowels of the city. I started to sweat so much, I felt like I was sweating through my jeans. Desperate, I finally had a pain pill hoping it would quell the rumblings in my abdomen. The good thing about the train is that being a sweaty lady popping pills doesn’t even put me into the top 10 percent of weird things happening.

crocusBy the time I emerged from the train to catch the bus, I was feeling OK, but still relieved when I saw the bus was coming right away. I made it to my stop and even popped into the community garden when I saw the gate was open to take a photo of my first spring crocus emerging from my plot.

Still, it’s best that I’m near a bathroom at all times. I just had about six of those pretzels with peanut butter inside and my bowels are now a roiling mess and my insides hurt. I feel like someone is pumping air into my belly and I might explode like a cartoon character. It’s seriously loud, whatever is happening. I’m worried I’ve ruined my dinner. It’s been hard to eat when you know it’s going to be followed by so much drama. People always ask what I can eat, and I answer I can eat whatever I want. I’ve been eating pretty normally lately, but just in very tiny portions. I found out the hard way yesterday that if I eat too fast, I’m rewarded with belly pain.

Today’s food, however, could be a quarter of a bagel and six peanut butter pretzel bites, and I can’t let that happen if I want to get my digestive tract on track. Earlier, one of my kittens ate an ant that made its way into the apartment, so surely I can at least find it in me to eat some yogurt.

I’m OK for long stretches of time, with pockets of sleepiness and times when I’m doubled over in gastrointestinal pain or discomfort. That’s how recovery is going—more slowly than I’d like. As the doctor reminded me, I need to be patient. Three weeks down, three to five weeks to go.

Right now, the healing incision in my belly and the adjustments of my newly rearranged organs give me pain, but nothing really ever compares to the pain of hospital bills, does it? Go ahead and tell me that you’re going to shoot so much poison into my veins that you will have to harvest my stem cells to rebuild my immune system. Make me lie down for long periods of time while you radiate my organs and burn my esophagus so much that I cough pieces of it up weeks later. Slice me open and remove organs and organ pieces and reroute my digestive system so that I’ll end up spending hours in gaseous pain with sore abs. I can handle that, even when I have moments when I am sure I can’t anymore.

Show me a hospital bill or an explanation of benefits, though, and my eyes glaze over and I fall apart. I’d rather deal with gauze than red tape. I will try to put on a brave face while nurses try to find a vein in my beat-up arms, but when it comes to the bills, I want to cry and scream that I just don’t want to. A phone call with hospital billing or insurance lasting more than a few minutes throws me into Kafka-esque pits of existential despair. When the bills arrive, just looking at them makes me want to eschew modern society, but then I remember that I am a product of the modern age and would do terribly in any other period of time. I know I need to stop being such a baby and learn how to deal with this stuff.

Still, figuring out medical bills and health insurance is hard for everyone—even for people smarter than me. Some people who even deal with this kind of thing for a living come across snags in the system. I once heard a story from an insurance/HR person who had an MRI done at a hospital that was covered by her insurance, but—surprise!—a doctor not covered by her insurance showed up at some point and ended up on her bill. Eventually, she had it taken off her bill, but the health care system is often a huge pain.

My billing experiences with Sloan-Kettering have been pretty straightforward (knock on wood) and last time, my insurance company was pretty good about working with them. I hope that’s the case this time. It’s one of the reasons I opted for MSKCC over NYU Langone for my Whipple procedure. I feel constantly confused by NYU Langone’s billing system, and after some conversations today, it seems as if they, too, are confused by their billing system. It comforts me to know that I am not alone, but it alarms me that the very people sending me bills are also confused.

Yesterday, I got an automated call letting me know that I had to pay $275 to NYU Langone or it would go to collections. I was given the option of paying right away, but I didn’t have a credit card handy and I wanted to look into it. I wrote down the amount and then called back today to try to pay it. I called the number to pay a bill, but then the person said it couldn’t be handled at that number because it wasn’t a hospital bill, but a doctor bill, and apparently those are handled separately because that’s not confusing at all.

I was transferred and I asked about the $275 bill, and they said I had a $500 bill and $50 past due bill (the one, I think, that pretty quickly went to collections and that I just sent a check out for). But what about the $275? No one seems to know anything about that amount. She transferred me to another number and told me to press option #2, which I did, and then I ended up with her again. She apologized and said there must be a high volume of calls and told me they would call me back.

In the meantime, I tweeted to NYU Langone and got a reply to call Patient Relations. I called Patient Relations, but they said they weren’t the people to talk to. The woman there was nice and tried to be helpful, but in the end, I don’t feel as if much was accomplished. She was going to suggest someone in a financial department, but they handle only inpatient bills (it seems as if there are a lot of divisions when it comes to bills). She said there’s a $200 balance (separate from the $500 and the $50, I guess) that won’t go to collections for another three months, but I am free to call and pay that now.

I still don’t know where the $275 or the automated call came from. It’s possible, she said, that the call came from billing. But why such an arbitrary amount? I feel like a frightened retiree they’re trying to swindle. They are one step away from calling and telling me I’ve won a free cruise. In the end, I spent about a total of 25 minutes on the phone today and got no real answer, paid no bills, and am still unsure about what happened.

In the meantime, I think I’ll ignore NYU’s confusing bills, though I have a nagging suspicion that one of them is going to collections somewhere. Hopefully by then, I’ll be on an island somewhere enjoying my free cruise after I hand over my Social Security number.

Update: After an all-day back-and-forth, I finally spoke to someone, paid part of the bill and got on a six-month payment plan. There’s no record of the mysterious automated call that I got, which is weird.

Today, I went to the doctor and got the staples removed from my belly. I joked that they would have a staple remover, like you have in an office (or had—who uses staples anymore?), but that’s pretty much what it was like. The nurse practitioner removed the staples and put some butterfly bandages on there for the next week or so. She also assured me that I wouldn’t burst open, which is my illogical worry. (Even with her reassurance, I know it will be months before I can move without half-expecting to pop open.)

As alarming as it was on Friday night to wake up with a big sticky spot on my T-shirt from my leaking incision, the leak was normal and seemed to stop. It was apparently just fluid that had collected under the skin and seeped out. The good news is that I am on track and healing nicely.


Delicious macro bowl

I still have weeks of recovery ahead. Sometimes I still find myself doubled over in gastrointestinal distress. Getting my digestive system back on track is tough. One of the doctors said that some patients find the gas/digestive pain to be worse than the incision pain. I still have very little appetite, and it’s tough to be motivated to eat when you know it could mean cramps and misery later. Still, my boyfriend is making me plenty of good food. A friend stopped over this past weekend to bring me a macro bowl she made full of good, healthy ingredients (including black rice, quinoa, avocado, asparagus, chickpeas, carrots, kale, mushrooms, carrot ginger dressing) and some vegan cinnamon ice cream. I can eat only little bits of food for now, and it takes about 6–8 weeks for the appetite fully to return, I am told.

This is what I looked like during my nap yesterday.

This is a much cuter version of what I looked like during my nap yesterday.

Some days I stay up all day long, like this past Sunday, and other days, like yesterday, I rest my eyes for a bit and sleep the afternoon away.

We had a chance to ask the doctor about the neuroendocrine tumor coming back. The odds aren’t encouraging. There’s more than a 50 percent chance that I’ll get another neuroendocrine tumor within the next five years, probably in my liver. They are going to monitor me fairly closely. Once it comes back, there are a variety of treatments: medication, chemo, or burning the tumor out. I have a follow-up with my doctor in a month, and I’m also meeting with a neuroendocrine tumor specialist that day.

It’s not the greatest news that I’ll basically be waiting for this tumor to reappear over the next five years. I know some people will say that I should focus on the chance that it might not come back, but please allow me to indulge my pessimist within and point out that, according to the odds, my Hodgkin’s lymphoma should have gone away with six months of chemo, I shouldn’t have had two types of cancer at the same time, and neuroendocrine tumors themselves aren’t all that common. We also asked why, after hanging around for years, the tumor became aggressive all of the sudden, and there’s really no answer to that. These neuroendocrine tumors sound tricky.

In the meantime, I just need to focus on recovering from the Whipple procedure. In the future, I’ll have to figure out how to live with the threat of the cancer returning—specifically how to prepare for its possible return without letting it cast too big of a shadow over my life. I’ll also have to really sit down and take a hard look at the long-term effects cancer is going to have on my life, from finances to long-term goals that just might not be possible anymore. I don’t think I can pretend like I can go back to “normal” or at least the way things were before. This last scan gave me the all-clear as far as Hodgkin’s lymphoma was concerned, but this new neuroendocrine tumor info makes me think it’s time to make a new plan.


Charlotte inspecting my care package.

When I wrote my last post, I was feeling pretty low. I didn’t want to deal with cancer anymore. Sometimes, when you put your head down and go through something like an illness, you want a break. You just want a few days off from being sick. Most often, you can’t take a break. Yet, in a certain sense, I did get a break. I had a year “off” from cancer in between my stem cell transplant recovery and my first pancreatitis attack. I’m glad I had that year to really enjoy myself and not worry too much about cancer’s return. I’m going to be getting some time off again, though I can’t say for how long. (Maybe forever if I’m feeling optimistic.) It will give me time to build up some strength and, of course, enjoy some cancer-free living. We have a fun summer planned.

Drawings received, including a health care companion.

Drawings received, including a health care companion.

After my last post, I was reminded how lucky I really am and how my pity party was unwarranted. I received so many nice and supportive notes and thoughtful messages. I’ve been receiving cards and visitors this week and weekend and my boyfriend’s family even made me a goofy video to cheer me up. Just this past week, I received an orchid and I got a package from my co-workers full of fun stuff, including a cat lady activity book, a bell to ring to summon my boyfriend and an inflatable wizard hat for the cats to wear. Now that the bell and the hat are out of the packages, my boyfriend and cats seem less enthused by them, but I am delighted. I have had a lot of snuggle time with the kittens.

Me and my wizard cat.

Me and my wizard cat.

As much as I’m not looking forward to the likelihood of another bout with cancer, I have plenty of better things ahead.