A few days ago, I was about to caution someone about being dishonest about something. Halfway through, I stopped myself. The words died in my throat. It doesn’t always pay to be honest or to do the right thing. I used to believe that being good is the right thing to do, but lately, it doesn’t seem to matter either way. Bad things happen to good people, and good things happen to bad people.

You can rape someone and get away with it if you are moderately OK at something sports-related. (I already knew this though, because I have already seen people get away with rape, cruelty and even murder.) You don’t always earn a six-figure book deal through hard work or talent, but by being a terrible person. Some of the most incompetent people I’ve ever worked with update their LinkedIn profiles with new positions because they are good at B.S. (They never fooled me, though. I don’t understand how people overlook their blatant lies. Until I realized…) You can become one of the most powerful people on the planet even by being so arrogant as to blatantly mock the people who would put you in power, as long as they don’t understand that you’re making fun of them. People admire someone who doesn’t pay taxes and doesn’t respect women. As a Hispanic woman who needs healthcare for cancer, I am terrified, but people think I am less of a person.

But I knew that too. I’m from Ohio, where I inexplicably see Confederate flags. (I don’t understand the Confederate flag thing in Northern states. It obviously has nothing to do with the Civil War. Why don’t they just make a flag that says “I Heart Racism!” and end the charade?) On the drive on I-71 from Cincinnati to Columbus, there’s a barn with a Confederate flag and a big wooden cross, the kind I imagine that would be burnt at a KKK event. Years ago, driving back late from Cincinnati one night, I turned to my friends—a black man, a Jewish man and an Indian woman—and said, “If we broke down here, we would all die.” I always would joke when I passed that place, but it’s to come to terms with my disgust, fear and anger.

I can’t joke my way out of this anymore. I can’t laugh anymore.

Sometimes, late at night I hold my breath for a few seconds and think about not taking another one. I don’t know if I have the courage to move forward, with this illness, in this world. I feel weak and helpless. I am physically drained and emotionally beat up.

I was emailing with someone about hope for my health and how I felt I had lost it, and she wondered, “Hope is a funny thing—is it fickle? Or is it paradoxically strong?” I think it’s both. Just as you can’t hold your breath until your body forces air into your lungs again, it’s extremely hard to completely give up hope. It’s a survival mechanism. Even if you’re told your time is running out, you hope for a good day, some extra time, something good for your loved ones.

At low points, when I think there’s no point in doing what I think is right, a tiny bit of hope nags at me. I have to think about what I think is right. My mom worries that she didn’t raise me correctly, with the right beliefs. She worries about my soul. I refuse to hate people based on sexual orientation or race, or believe that women shouldn’t have equal rights. I don’t see how that makes me a bad person. However, while I try to love people as a whole, I have a lot of trouble loving people as individuals. I try to make peace with the concept of loving People, but I can’t love people often on an individual level. I was bullied a lot as a kid, and I don’t believe that people are basically good. People cut you off in traffic, push you on the train, say terrible things online. I find myself thinking things like, “Who IS this terrible person? I’m trying to be NICE.” With lots of expletives thrown in. I am not very good at being nice.

When everything seems pointless, I know that it makes me personally feel better to try to do the right thing. (Sometimes.) Maybe it is completely pointless to be “good” or to even try. The bad guys often win. Bad things happen to good people. Good things happen to bad people. Life isn’t fair, but I already knew that too. However, bad things often happen to good people because of bad people. Others are exploited so few can make money. Some people don’t want others to be equal because they feel threatened. People slap a religious or idealistic label on what war has always been about—money and power. Many people are bitter and feel the world owes them something.

On some days, everything—every single thing—looks bleak. Hope is fickle, and it can be dashed by one more piece of bad news, yet it’s paradoxically strong. One day—sooner, as it turns out, than I’d hoped—I’ll die and my name will be forgotten. As long as I exist here, though, I will try to remain strong enough to try to do the right thing. I won’t always, but when my time is up, I hope that I will have done my best.

“Millions pray for all we take for granted.”

A friend posted this the other day, amid the updates about the crisis in Syria, and I have been trying to keep this in mind when I find myself sliding into a pool of self-pity.

Chemo has been postponed one more week so my shingles can resolve. Yet the news is good(ish). After weeks of numbness, nerve pain and a strange lightheaded and dizzy feeling that I was fairly certain was an ingrown twin gnawing on my brain from the inside, I have been told my symptoms are probably all been related to shingles. My blood has been examined, I have had brain and spine MRIs and I had an EMG test, so I am relieved that even though I still feel pretty bad, everything looks pretty normal. Though it could take months for the shingles symptoms to go away, there probably isn’t lasting nerve damage.

I finally have some answers after two months and two ER visits, and so many appointments. Though the shingles rash showed up only a few weeks ago, it’s possible my symptoms dating back to October have been related to that. I have had some alarming symptoms over the past four years, from lymphoma tumors in my chest to the painful pancreatitis from my neuroendocrine tumor, but the numbness and nerve pain has freaked me out more than anything. The rapid decline in mobility and comfort has been the scariest thing. After improving for a bit, the nerve pain and twitching got worse this week, but the doctors say this is normal. I have an anti-convulsant called Gabapentin that I can take, but I have been avoiding it because it can make you spacey and wobbly, both of which have been already been side effects of the shingles for me.

I am actually looking forward to starting chemo on Tuesday, once I am done with my shingles medication. I feel like it will give me permission to take it easy. As I always do, I have been trying to cram everything in before chemo—from fun things like seeing people and having last hurrahs to things I need to do like errands and cleaning—and I think I wore myself down a bit when I need my strength for the coming months. As always, I feel a bit desperate, as if I’m trying to suck the marrow out of life before the unknown. Though the treatment doesn’t seem as bad as my previous chemo, I have a new nagging thought: What if I never feel better?

Though my boyfriend reminds me that it’s possible, it’s unlikely that I’ll ever be “cured” of this cancer. When doctors talk about living with a disease, the flipside of that statement is the pessimist’s view that living with a disease means you’ll eventually die from it. Some people say you don’t know what will happen, and this is true, but alternatives I can think of sound even less appealing. I could get run over by a bus. No thanks. I’ll take cancer. The doctors say I could have decades left, but I also worry about what I’d leave behind and what I thought I would do in my life that I haven’t (and most likely won’t). I find myself nostalgic for when I was recovering from the stem cell transplant and when I was recovering from the Whipple procedure, as physically tough as those times were, because I felt I had more hope. I still do, sometimes, but it’s slippery and harder to grasp these days. I hope that the side effects from the shingles clear up and I stop being so twitchy and weak, and the nerve pain finally stops.

Some chores make me sad, like cleaning the bathroom and doing the dishes. It makes my mind wander to dark places. My grandma would sometimes get depressed by ironing. Some tasks take your mind to regrets, missed opportunities, nagging worries. I was doing the dishes earlier, blubbering to myself and inexplicably repeating, “I don’t want to die.” Some chores, however, are the opposite, perfect for therapeutic reflection. Gardening makes me happy. A few weeks ago, I planted some bulbs in my community garden plot. It’s always an act of optimism, putting the bulbs in the ground and hoping for beautiful flowers in the spring. The year of my transplant, I missed the flowers when they bloomed in April but people sent me photos. I’m nervous as to what this spring will bring. As I planted, I thought about accepting limitations and found some peace with my latest diagnosis. I thought about the trying to grapple with the unexpected and accepting things as they are.

When I got home, as I threw away the bags that the bulbs had been shipped in, I noticed something. I had ordered some daffodils, as well as three types of tulips—one white and the other two in pastel shades so my garden plot would be full of complementary colors. When I opened the box in the garden, I had noticed that the description of one set I had ordered—a variety of soft purples and pinks—were described as “orange with purple flames.” Eager to get the planting done in the chilly December air, I hadn’t paid much attention. Then I saw a note attached to the bulbs: The company was out of the bulbs I’d ordered so the nursery had sent me these instead.

In the spring, orange tulips with purple flames will bloom among my soft pastels and white tulips. It is not what I planned, but it will be beautiful still. It was a perfect lesson for the day. I hope I can apply it beyond the garden.

The good news is, despite so much evidence to the contrary over the years, my brain appears normal, according to Thursday’s MRI. Relieved, we headed home from urgent care, and the next morning I went for a spine MRI. I am awaiting results with that familiar feeling of anticipation and dread, worried what it might show yet also worried it might not give any answers.

I feel myself becoming desperate—for answers and for hope. For four years, I have been trying to hold it together, through the lymphoma, the stem cell transplant, the first neuroendocrine tumor and the Whipple procedure, but now I feel as if I just can’t do this anymore. For the first time, I feel as if I’ve lost hope. I have been trying to continue on as normally as possible while trying not to do any physical activity that aggravates the nerve and muscle pain. When I do get a muscle spasm or, like today, pains deep within my calves, it’s not so much the physical discomfort as the sheer panic of not knowing what’s wrong (or what I can do) that bothers me.

On Friday, I called my oncologist to see if the numbness could be related to something my general practitioner brought up: paraneoplastic syndrome. It’s rare, but then again, so are neuroendocrine tumors, as is having two unrelated cancers at the same time. (I bought a lotto ticket in case my penchant for crazy odds could be in my favor, but yet again, no such luck.) The symptoms can include peripheral neuropathy and shingles after what appears to be a cold, and that all fits, though that is from my Googling and I really have no medical knowledge. I’m trying not to fall into an Internet hole reading about how the neuropathy is often irreversible, though it seems as if treatment for the underlying cancer can help. Unfortunately, treatment is on hold for at least another week until the shingles clear up.

The neurologist I saw this week seems to think the neuropathy and nerve pain is from the chemotherapy I had, but that what over a year and a half ago. I also mentioned to the urgent care doctor that my chemotherapy was a long time ago, and he said that it takes “a long time for these things to go away.” I never had such severe symptoms to begin with, though, so I am a little puzzled. He also said there’s “no magic cure for this.” Even without a magic cure, I’d like some answers and at least the possibility of relief, especially since this has been progressing for a month and a half.

I felt guilty for going to urgent care, and I felt even worse when I called the oncologist’s office and the person I spoke with on the phone questioned why I would go to the emergency room when I had spoken with the nurse the day before. (I could tell she sounded annoyed too.) “I just felt really bad,” I stammered. “I was dizzy and my head felt weird.” I knew it didn’t sound good. I don’t believe in wasting people’s time. What I wanted to say but didn’t, because I didn’t want to sound dramatic, was that I felt like I was dying. I have been sent to urgent care several times over the years and I know it’s a busy place with long waits, particularly if you’re lucky enough to not be in a dire situation. I wouldn’t have gone there if I didn’t feel as if I was about to pass out at my desk. “I really thought that I might die,” sounded ridiculous too, and I swallowed my words.

The terrible thing is that I think about death every day and the thought of no more pain or questions is appealing. Then I am appalled with myself. I have this thought every day. I know it’s terrible. It’s ungrateful. It’s an affront to everyone else fighting to live. Yet it occurs and I just let the sadness and disgust settle. Earlier this week, as I slept, I felt as if I could have died, as if death were an open door and I just had to slip through, but at the last second, I resisted. I woke up with my nose clogged and struggling to breathe a bit, so it wasn’t as dramatic as my dream state suggested.

I feel as if I’m becoming a pest, but the worse my symptoms become, the more desperate I feel. I have gone from feeling worried to scared to terrified over the past few months, and I am worried I have no answers in the future, only more pain and more questions.

My boyfriend, who listens to a lot of my calls to the doctors, says I’m not accurately describing the severity of the pain and numbness and he has always said I downplay my symptoms. It’s true. I feel as if I don’t want to bother the doctors with my troubles or I worry they think I am overdramatic. However, I think I’m past that point. My missives in my patient portal are sounding unhinged. Instead of “My head hurts and my body is numb. Should I be worried?” my recent messages are more like desperate pleas for help. When I feel bad or worry that I might be seen an impatient patient, I remember: They are not the ones who are in constant pain and discomfort. They are not the ones who can’t sleep because their muscles hurt and legs are twitching uncontrollably. They are not the ones who can’t do the same physical activity that was possible just a week ago. They don’t sit at their desks feeling as if they are going to pass out. Their chores aren’t hampered by deep calf pain. And they might not know how I really feel. I need to more accurately describe the severity of my symptoms and my concerns without sounding like a crazy person. (The latter, I’m afraid, is too late, but I suppose all cancer patients lose their minds from time to time.)

Before my Hodgkin’s lymphoma diagnosis, I was put off by some doctors for a few months and you would think I would learn. The difference is, I have confidence in all the doctors I am seeing now, but I’m starting to lose hope that I will ever get “better” and that I will always be like this. I need some answers and some hope, and both seem elusive.


I am sitting in a place I hoped never to be again: the Urgent Care of Sloan-Kettering. I have thought about coming to the ER for more than a month (and even did end up at urgent care on vacation in October). I have even have had a little to-go bag packed for the past few days, something the triage nurse laughed with me about.

My symptoms come and go, but the numbness has gotten a lot worse, and I’m always in pain. It’s just a little bit of pain, and it’s not in the same place for long. I also get lightheaded and feel strange, but since it comes and goes, I haven’t known what to do. This past week I have felt increasingly terrible, to the point where I am afraid to move too much, because using my muscles makes them really twitchy and painful. I have stopped working out for now and feel like just a shadow of the person I was even a week ago. At work today, I felt really lightheaded and strange, with a buzzy feeling in my head. I had MRIs slated for Friday and Monday but I really feel alarmed since the numbness and pain has moved to my head.

I think I will probably be here for awhile. I always try to be grateful if I am in the best shape in the ER/Urgent Care. I’d rather be in this situation than being rushed in. I think they are going to do the MRI here. I am equally afraid it will show something or show nothing. I don’t want this to be serious, but I also want to know what this is, as I have been so miserable.

On the long cab ride up here, I watched the streets slip past (very slowly, aware of the meter) and tried to enjoy the luxury of a rare cab ride through the city and remember all the nice things. I passed the pub where Dylan Thomas drank himself to death (not a particularly nice memory, nor mine) but it’s also the place where me and another friend surprised my best friend, in town from Dublin, with U2 tickets when she came to visit me a few summers ago. I went past my friends’ workplace where we did lunchtime yoga and had lunch at her work cafeteria with a view of the river. I passed the Webster Hall area, where I have seen so many bands and just recently got to see a Q&A with A Tribe Called Quest. I also thought about how the driver should have taken a different route. But life has been good to me, and I need to remember that.

I was supposed to start chemo on Monday and took my initial doses that day and Tuesday morning, but I had developed a rash on Sunday that turned out to be shingles. My chemo is delayed for a few weeks until I get over the shingles. That was a bit of a disappointment as I was all geared up to do the chemo and now it will be at least a few more weeks. I had hoped these symptoms might be alleviated once I started the chemo.

I hope I leave here today with some answers.

It’s the middle of the night and I can’t sleep for reasons of both body and mind. I have been a little quiet the past week, because I’ve been internally freaking out—not even about the return of the cancer, but of some other symptoms that have been plaguing me since mid-October.

It started when I was on vacation, when I felt numbness in my arms and legs. Sometimes it would wake me up. Eventually, I ended up in the ER in Scotland, where the blood tests came back normal. I followed up with some more normal blood tests at Sloan-Kettering. I saw a primary care physician who also said my blood tests looked normal, but she kept asking me when I was going to go to MSKCC. (The thing with being a cancer patient, sometimes, is that other doctors don’t want to deal with you if the answer doesn’t seem clear cut.) On the 8th of November, I saw a nurse practitioner who did some tests and ruled some things out, but nothing seemed to point to any obvious cause. I had hoped my MRI would provide some insight, and though it showed that the hint of a tumor had grown to over a centimeter in a few months, I’m beginning to worry that this is something else. My oncologists are referring me to a neurologist.

In the meantime, the occasional numbness in my arms and legs and in between my shoulder blades has become progressively worse. It hasn’t just been a slow decline, however; some days are better than others. I finally tried to get back to working out this week, but after four days in a row, my muscles would cramp up and freeze. On Thanksgiving, my hands kept freezing into claws. The next day I felt OK, but then by Saturday, I felt off again, and on Sunday, I discovered the beginnings of a rash.

I can’t sleep because I have deep pain in my feet and twitching all throughout my legs, as well as a throbbing sensation, almost as if I can feel all the blood coursing through my veins. I am full of random pains—in my knees, elbows, shoulders. Whoever has a voodoo doll of me, I am sorry for what I have done. You can stop it now.

Since it’s so late, I decided to take to the blog, and I already feel a little better, with my mind at ease a bit. It is more comforting than looking up my symptoms on the Internet and convincing myself I have permanent nerve damage, the activity that I had previously been engaged in since about 2 am when the tingling, burning and pain nudged me out of a half-sleep state.

When I feel OK, it’s easy to forget how terrible I’ve felt over the past few months, and the times when I’ve almost just thought about going to an ER, or the nights I’ve laid awake, terrified of what’s happening. I’ve tried to be brave through all of this, but these latest symptoms have scared me more than anything over the past four years. At one point today, a small jolt of pain brought me out of contentment and I realized that I’ve been in various states of pain for more than a month. I’m worried of what it could be but also worried that I’ll end up posing desperate pleas on message boards for answers. However, I know I am lucky to have access to great doctors, so I hope the mysteries of my symptoms fall into place and relief is hopefully in sight. I’m finally tired again, so goodnight.


As I expected, the MRI today showed that the cancer is back. The spot that they saw on the scan in late August is now about an inch, so they would like to get started on treatment right away. I am sad, but not surprised. A small part of me is relieved, since I have been feeling so bad for the past month and a half. (Though I do wish the tumor had waited until after I was back from vacation to start causing trouble.)

Of course, before I start the treatment, the insurance company needs the doctors to fax something to them, and I need to order the medication through the mail. Hopefully, I can start chemo the week after Thanksgiving. The treatment itself doesn’t seem too terrible. I take Capecitabine (Xeloda) twice a day every day for 14 days, and on those last five days I also take Temozolomide, then I take two weeks off. The good news is that it’s oral medication, since I have exactly one good vein left. It won’t be fun—side effects include fatigue, nausea and dry hands and feet, as well as a sunburn type of feeling. Mainly, however, the fatigue sounds like it would be limited to the latter part of the two weeks and the ensuing four or five days.

These chemo drugs don’t cause hair loss, though it’s kind of funny that my hair is so short now since I buzzed it to be Eleven from Stranger Things for Halloween. I’ll be able to eat whatever I want, nausea permitting, without the raw fruit, vegetable and fish restrictions. (Last night, a friend who has joined me for many “last meals” and “last nights out” and I went out for sushi, just in case it would be off-limits soon.) I can still work out as much as I want, energy permitting.

After three cycles, I go in for a scan to see if the tumor has been reduced. After the chemo, I may have an additional embolization. The doctor said there are a lot of treatments available for this neuroendocrine tumor.

The sad part is that it seems like this is about management. The tumor can go away, but it seems as if these neuroendocrine tumors might just be something I have for the rest of my life.

I also don’t know how long the rest of my life will be. But then again, who knows for certain? Some things make me sad—like holding my boyfriend’s hand and knowing I might not grow old with him. I don’t want to die before my mom does and leave her all alone.

It’s not quite time for such morbid thoughts, though. In my darkest times, I am tired of being sick and would like to give up. I think about how it’s lucky I don’t have children to leave behind, but I also sometimes have survivor’s guilt—couldn’t I give my life up to someone who made more of a difference or will do something important? I have always tried to enjoy and savor life as it is, and I will continue to do so. As much as I need freelance work sometimes, I am going to try to prioritize taking care of myself and being with the people that I care about.

I have been really sad the past few weeks, which has included the Indians’ World Series loss, the election and the worsening of my health. Oddly, it was the discontinuation of unlimited membership of my favorite workout service that brought me to tears earlier this week. It was the final tiny straw in a series of events—a final small disappointment that pushed me over the edge. This cancer news, though it has brought tears, hasn’t hit me as hard. It’s too big to grasp.

In my times of self-pity, I long for things to return to “normal.” It is what I have been hoping for since I found the lymphoma lump almost four years ago. A few months ago, I talked to someone else who was about to start treatment for her second type of cancer. We talked about limitations and how hard they are to accept. It is time I accept that things may never go back to the version of “normal” that I have wanted, and I’m learning to let go of things I thought I might have one day. I suppose it’s something that happens as you get older. When your timeline seems shortened however, it sometimes seems like, instead of letting go of your potential dreams gently and gracefully—like letting go of balloons that drift upwards into the sky as you glance up wistfully—disease comes along and pops them, leaving you confused and holding strings with deflated bits of rubber at the ends.

As I move forward, I will process this more and will probably turn to the blog to sort things out. I am looking forward to a final week before chemo and also to hopefully shrinking down this tumor.

Lately, we have been hearing a lot about “hoping for the best, but preparing for the worst.” I’ve often stuck to that bit of advice, especially when preparing for upcoming scans and tests. Some would say I’m a pessimist, but I disagree. I am often an optimist, but I like a cushion of pessimism, so I don’t get my hopes up.

Of course, there’s also that saying, “Worrying is like praying for what you don’t want.” But I’m a worrier. I have an MRI scheduled for tomorrow, and I don’t expect the news to be good. After my last scan in August, the doctor said it looked clear, but then I got a call a week later: The official report was that there may have been something abnormal on the scan, so they’re taking a closer look.

Since then, I’ve been trying to enjoy myself and keep things normal. After the past year of death and illness, we took a much-needed vacation to Iceland and Scotland, with a one-day detour to Manchester. It was beautiful and I had so much fun. The very first day of vacation, however, I woke up and felt off–a little uncoordinated and a little bit numb in my extremities. It got a little bit worse the next day, and four days into my vacation, I ended up at the emergency room (since I didn’t have a doctor in Scotland) for some answers. The blood tests all came back normal. Even though I still felt a bit off, my mind, at least, was at ease, and I enjoyed the rest of my vacation.

In a hotel bed in Iceland, with my limbs going numb, I was terrified and I vowed to take better care of myself.

Then I got a two-week cold when I returned. I felt OK, with some small symptoms—inexplicably numb shins—but then it eventually got worse. I saw a general practitioner almost two weeks ago, but she didn’t have many answers, though she did rule out a slipped disc since the numbness is in so many different places—my legs, arms and in between my shoulder blades. I feel lightheaded and the weekend before last, I sometimes felt like I would pass out. I eventually ended up taking a blood test at Sloan-Kettering last Tuesday.

The blood tests don’t show anything wrong. In the best case scenario, it’s an electrolyte imbalance, and I can handle things with taking my pancreatic enzymes and taking good care of myself. In the worst-case scenario, the MRI will show that the cancer is back. I’d take more tests over the return of the cancer. I went to see my lymphoma oncologist today. At one point, I almost broke down, because I’m tired of being sick. Sometimes, my head feels weird and a limb is going numb and I’m trying to act normal while I’m really freaking out. This week has been a bit better than last week, though I can’t tell if I’ve felt better of if I’m getting used to feeling weird.

I have been dreading the scan and the bad news it could bring, but I also want to feel better soon. Until then, I have been hoping for the best, while preparing for the worst. There has been a lot more that I have wanted to write these past few months, but I have been too busy and too tired to write. I have started so many posts that I never finished. This brief post is mostly for me, to document the hopefulness and the worry.

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.