Today I slept all day after my tumor biopsy. I tried to read and tried to get started on some freelance work, but all I have been able to do today is sleep and watch episodes of Modern Family because I don’t know how to work the TV remote. The biopsy itself didn’t take very long. I was sedated but didn’t fall asleep. The lidocaine made me numb while the doctor used an ultrasound to take samples of the tumor.

The tumor looked huge on the images I saw, but it could be my imagination. Hopefully the biopsy will shed some light as to why the chemo didn’t shrink the tumor. At the last MRI, it was 1.8 x 1.6 cm and now it’s 2.6 x 2.4 cm. I slept during the two hours I was monitored for bleeding, then I came home and slept all afternoon. I did get some good news in between today’s many naps: The ACA was not repealed.

Last Wednesday, after my disappointing scan result news, I received fluids since I was so dehydrated. I talked to one of the nurses about what was going on and she passed it along to the doctors, who ordered one more test. That night, I rallied and went to a talk with Depeche Mode at the NYU Skirball Center and a Godzilla movie where a live band performed along with the movie. The next day I found out that the fever, chills and digestive issues were because I had salmonella. I have no idea how I got it, especially since my boyfriend and I ate pretty much the same things during the previous week, on vacation and once we got back. It got my mind off of the tumor for a bit.

I’m too tired to write any more, and I pressed something on the TV remote so the TV isn’t working so I am going to back to sleep. I will get the results and more of a game plan next week.

After a night of fitful sleep and weird dreams, I went in for my MRI early this morning. As I suspected, the news isn’t good. At first it seemed like the tumor may have grown, but I think the official word is that it just stayed the same and the chemotherapy didn’t make much of a dent. There’s usually a 70 percent success rate for the chemo, but as always, I fall into the unlucky group. (Being in the group of Hodgkin’s lymphoma patients that chemo didn’t completely eradicate, not responding to the clinical trial, having a second type—and relatively rare—type of cancer, getting the cancer again, not responding to this chemo.) I am not surprised, just disappointed.

The doctors are concerned that I’ve been feeling so terrible. The last few days of fever, chills, fatigue and nausea don’t seem to be related any viruses (cold, flu, etc.). Today, my fever and chills don’t seem as bad, but I’m still fatigued and generally pretty run-down. The peripheral neuropathy has really been affecting my quality of life. Right now I am getting some IV fluids to hopefully get me feeling better and more hydrated.

I thought they were going to do a PET scan today, but I was just told it’s next Tuesday. They’re going to try get a full picture and make sure there isn’t anything that has been missed. They are also checking to see if these tumors are producing hormones that are causing some of these symptoms. They already know that my tumor is a little bit on the aggressive side; mine if more poorly-differentiated than they would like.

I hope they find out what might be causing me so much discomfort and can maybe help with these latest symptoms and neuropathy. I know they’re also trying to determine the best steps to take to treat the tumor: ablation, more chemo, clinical trials. I’m worried they’ll find some other terrible thing on the PET scan.

Shortly before his death, Leonard Cohen said, “I am ready to die. I hope it’s not too uncomfortable.” I am not ready to die, but I do hope that what awaits me isn’t too uncomfortable or too painful.

The hardest thing has been hearing my boyfriend’s voice catch when he asked the doctors some questions about my quality of life. He’s been there when I can’t sleep because of cramping feet and legs, or when I wake up with my heart racing. He accompanied me to the ER on vacation in October. He’s seen me cry because of the pain in my legs and has seen how scared and frustrated these symptoms have made me. It was also hard to hear the tears in my mom’s voice, because she has been so hopeful.

As sad as I am that this disease is hurting people I love, I am grateful for everyone’s well-wishes. I am also inspired by so many of you. When I talk about not being able to make any plans because of such an uncertain future, one of my friends reminded me that you can’t think like that. (She should know—she just wrote a book about her family’s fatal gene disorder.)

As I sit here on this nice day hooked up to an IV and watching people walk by on the street in my old work neighborhood, I’m reminded of a book I read recently: My Name is Lucy Barton by Elizabeth Strout. The opening paragraph reminded me so much of the month I spent at Sloan-Kettering for my stem cell transplant. Except I didn’t have a view of the Chrysler Building from my room (though I did from my old work office around this very spot) and I just had a sliver of sidewalk I would hungrily watch for any pedestrians during lonely afternoons. “There was a time, and it was many years ago now, when I had to stay in the hospital for almost nine weeks. This was in New York City, and at night a view of the Chrysler Building, with its geometric brilliance of lights, was directly visible from my bed. During the day, the building’s beauty receded, and gradually it became simply one more large structure against a blue sky, and all the city’s buildings seemed remote, silent, far away. It was May, and then June, and I remember how I would stand and look out the window at the sidewalk below and watch the young women—my age—in their spring clothes, out on their lunch breaks; I could see their heads moving in conversation, their blouses rippling in the breeze. I thought how when I got out of the hospital I would never again walk down the sidewalk without giving thanks for being one of those people, and for many years I did that—I would remember the view from the hospital window and be glad for the sidewalk I was walking on.”

I am grateful I had those several worry-free days in Barbados. (Well, they weren’t completely carefree—the water in the hotel’s rooftop pool was cold and there was a fruit fly in my tropical juice. You have no idea how I suffered.) I knew I could be facing some bad news and I wanted to savor the time before I could face more uncertainly, barrages of tests and treatment. Also, I didn’t get sick until I got back, and for that, I am very grateful. Next Friday, I should have some answers and info about the plan.

On Saturday, the water in the rooftop pool at the hotel in Barbados was cold. I took a quick dip anyway, knowing it would be preferable to the cold air that would greet me hours later when we arrived home.

In January, we made the decision to book a little chemomoon, after the chemo and before the scan. We had JetBlue credit that was going to expire, since we had to cancel a trip to California last year so we could stay home and take care of our dying kitten, Charlotte. The chemo side effects were a little rough towards the end of the last two rounds, and with my mysterious nerve pain and peripheral neuropathy, I wondered if it was a good idea to go the day after the final chemo day. I had some leg and arm numbness and a few lingering side effects, and one night I woke up with my heart racing a bit, but mostly I was OK. It was a much-needed respite from chemo and medical stuff.

Yesterday, I had chills and was really tired so I went to the urgent care near the office. I had 103-degree fever and the flu test came back negative. I knew I’d have to call MSKCC and what they would say: I would have to come in to the urgent care. By the time I arrived uptown my fever was gone. I was given another nasal swab to test for viruses, as well as a blood test. My blood came back normal, and there were no viruses detected. I fell asleep in the waiting room and while I was given some fluids and fell into a deep sleep when I returned home after midnight. This morning, I felt a little off and so tired, so I worked from home. I had a 101-degree fever in the morning and a 102-degree fever this evening.

Tomorrow I have my follow-up scan after the chemo. I’m really worried that the chemo didn’t work, since I’m feeling so bad. I’ve felt pretty bad since October. I’ve been fairly pessimistic since it always seems like there’s bad news, followed by more bad news. I would like a little cancer break, but it probably isn’t in the cards. I will find out more tomorrow. In the meantime, here are some photos of my trip to Barbados.

Fresh juice upon arrival.

Fresh juice upon arrival.

Balcony friends.

Balcony friends.

Roof pool.

Roof pool.

Beach.

Beach.

Another beach view.

Another beach view.

Balcony view.

Balcony view.

Balcony at dusk.

Balcony at dusk.

Crab.

Crab.

Anole.

Anole.

Monkey.

Monkey.

Fish.

The cat enjoying a video of the mourning dove on the balcony.

The cat enjoying a video of the mourning dove on the balcony.

I had to fill out a form at MSKCC about my mental health earlier this week. When I was checking off boxes for things like anxiety, depression and sleeplessness, I couldn’t figure out what was cancer-related, what was chemo-related, what was neuropathy-related and what were side effects of the endless influx of alarming news. Real news. Really alarming news that makes me sad and angry and keeps me up at night, along with the chemo side effects and the nerve pain that makes a lot of tiny nerves in my body feel as if they’re thrumming with energy.

As I noted, I marched a few weeks ago in New York, and my personal cause was to fight the repeal of the ACA. While it looks as if there will be delays on the repeal as there’s no plan in place, I am still concerned that a new plan would make it easier to deny healthcare to people with pre-existing conditions and to put a lifetime cap on healthcare. According to statistics I saw from MSKCC posted on World Cancer Day, at least one in three people will develop cancer in their lifetime. I also agree with many of the causes for which people marched, but since so many people are touched by cancer, I felt as if people may be able to understand how people feel in this situation.

As it turns out, I am often wrong about that. The following week I got into an online discussion with someone about fairness. His arguments weren’t mean-spirited; mostly he asked a bunch of questions and wanted facts to back up my claims. While I was busy finding actual statistics and unbiased sources, he would throw up some more questions, so I ended up exhausted. (He seemed to like to play devil’s advocate, but, as friend pointed out, “The devil has enough advocates.”)

I actually don’t like to argue or debate with people. I need to look up facts from reputable sources to reference, and sometimes that takes a long time. I’m not particularly eloquent. I don’t really believe in astrology, but the description of a Libra fits me, and I try to consider the other person’s viewpoint and make sure that their points aren’t valid, and it’s just not a good quality for debating purposes. Another reason you won’t find me in a lot of online arguments is a Logic 101 class I took as a freshman in college. I feel as if there is a fallacy to the other person’s logic in the first place, I either have to disprove the fallacy of the argument or use a bad argument myself. It’s exhausting. I usually just stay quiet, but these days, I feel as if the price is too high to stay silent.

This man seemed to be arguing that the ACA was unfair because he would be paying for other people’s healthcare. But that’s how insurance in general works: You pay your premium all the time even when you are healthy and then some of the money is used to pay for those who are sick. A few people pointed out that if you have a car, you are required by law to have insurance, so if you are paying for someone’s car that got totaled and you haven’t had an accident, should you refuse to pay?

I don’t think I should be denied coverage when I have paid all these years in a repeal that would give the top households $7 million in tax breaks. He asked why they should pay more in taxes, and the answer is: Because they make more. That is how income tax works. Or theoretically should work. In fact, as long as we are talking about fairness, women often make 10-20% less than men for the same jobs. If he is worried I am coming for his hard earned money, I am working harder for mine.

He asked if healthcare was a “right.” It is, according to article 25 of the Universal Declaration of Human Rights and to the EMTALA. (And people who don’t have insurance would most likely end up in the emergency room.) A lot of people don’t think that it should be a right, however. I personally think that outrage could be better directed at a system of inflated drug prices and costs many of us don’t understand.

Someone else pointed out that education is a human right too, so if he balks at paying taxes for something he doesn’t feel he uses, people pay taxes so all children can go to school. Although the education system looks increasingly bleak, I gladly pay taxes so children can go to school.

During this conversation, I brought up the instance of someone who used to cut my hair years ago. She had back pain but didn’t have health insurance so she put off going to the doctor. It was lymphoma. She died at age 27. I said that maybe she would be alive if the ACA had been around and it had been caught sooner. He responded by saying that would be fine that I wanted to donate to her care. I did donate to her care. A lot of people I know did. There were fundraisers and benefits. If she had had insurance, she might have been able to go to the doctor sooner.

Yet so many people listen to stories stone-faced. What does it have to do with them?

After my conversation, I wondered if he was right. Am I a burden? I don’t think I’m alone, as a cancer patient, when I say I feel like a burden on my loved ones—financially and emotionally. Sometimes I feel like it would be easier if I were gone, and then I remember that I’m actually already dying. I find this darkly funny.

I am discouraged by an overwhelming message of: Why should I share? Why should I care? If you end up only caring about yourself, I think you would end up lonely and bitter.

As I grapple with my own anger about what I perceive as unfair, I wonder about those who are angry at me. I knew someone who was a very angry man and who always seemed as if felt as if the world owed him something and he had been shorted. (Life had dealt him some unfair blows.) Yet it seemed as if he was never happy. As long as someone has something that he doesn’t, he’s so angry. What I don’t think he ever realized was that he could have everything and not be happy, because what he envies and resents is other people’s happiness. He tried to make me unhappy every time I saw him, and he often succeeded. I don’t know that it made him any happier. I finally started to avoid him, and that also upset him—not because he wanted to see me, but because I had robbed him of an opportunity to try to make me feel bad. Yet I feel as if some don’t understand that happiness doesn’t transfer. It’s not something tangible you can take from someone else and then possess. You might make the other person unhappy, but you won’t be any happier. If that person’s happiness comes from within, then you won’t be able to keep it for long.

Some people think I would be better off dead, that maybe I should just go away. That’s fine. I tend to hang on to some insults that I secretly fear are true and roll them over into my mind until they’re smooth and well-worn, like a stone in a river. Once the edges have worn down, they’re almost friendly companions.

For example, many times when I am at a locker room mirror putting on my makeup post-workout, I think about something that happened in eighth grade. After gym—a traumatizing experience in itself—I was putting on my makeup in the vain hope of fitting in. I was taking up one of the locker room mirrors, when a girl who was impatient to get to the mirror wondered aloud—for my benefit—to her friend why I was bothering to put on makeup because, as she said, I was a “loser.”

A normal person would have forgotten that, but I keep a select roster of terrible things that have been said about me and take them out and examine them from time to time. Is this true? No. I tuck it away, knowing I should cast it aside completely.

Wince-worthy things that I’ve done, however—those I like to whittle into fine points and keep in my pockets, so I can close my hands around them every now and then, as a form of punishment and to remind myself to be better if I can.

Some feel stronger by calling others weak. Some seem to think people who are sick are a drain on insurance companies, instead of the system being a drain on us. They think we are weak and they shouldn’t be “bogged down” by people dying. They think we’re “scamming the system,” because they can’t imagine people without hidden agendas. The cancer patients and people with chronic illness who I know are some of the strongest people I know.

The words of bullies, in the end, have also made me stronger.

Some would like us to believe we are weak for caring about others. Physically, I am weak. I haven’t been able to work out. I get tired easily. I’m often disheartened. Yet so many others have offered their strength to me. A workout studio generously gifted some classes to me since I couldn’t work out on a regular basis, and it was a sanity-saver. I have received several candy care packages from former co-workers. In the past few weeks, I received some postcards with supportive messages from mystery sources. Someone made me a cat quilt.

People do what they can. During a few dark weeks, I was crying a lot, and I started to cry on the way to the bus when I heard my name. It was the man who owns the local laundry service. He wanted to know how I was doing and I couldn’t cry while we exchanged small talk. He chatted with me until the bus came and when I got on, I realized he had just been chatting on his way down the street and wasn’t even getting on the bus. Sometimes the local crossing guard tells me to hang in there and tells me to never give up. Being nice could save someone a few minutes of tears at least.

I have been overwhelmed. I want to do big things, like fight the ACA repeal, but I also try to do little things when I can. I reunited someone with a lost earring this week. A few weekends ago, there was a puddle of mystery moisture on the train seat and I stopped four people from sitting in the puddle. (If you have ever sat in mystery moisture on a train or bus, you know that’s an act of public transportation heroism.)

They’re not exactly George Bailey moments, but I am trying.

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I started writing a very different post early Wednesday morning, after the kittens woke me up at 5 am. I actually felt as if I was thrumming with nervous energy. The kittens, of course, immediately fell back to sleep, enjoying the untroubled slumber of housecats.

Part of this is the shingles, which tried to return when my neutrophil count was low during this last round of chemo. I still felt a little twitchy, but the gabapentin seemed to help. From what I’ve been told, the low count makes me more susceptible not so much to outside germs, but to infections within and to bacterial infections. I’m on various medications to ward off the shingles and other infections that have tried to take hold and to manage some of the chemo side effects.

By Wednesday evening, though, when I tried to go to sleep, the twitching and cramping in my legs was so bad, I couldn’t go to sleep. Every time I would try to drift off, I would get a painful cramp in my foot, my big toe splaying out from the rest of my foot. I watched helplessly as the muscles in my foot pulsed, and some of my toes moved side to side. I hadn’t felt this terrible since November. I remained twitchy the next day, and Friday I woke up with tremors in my hands and a really sore tongue that was also twitchy. I saw the neurologist that day. He did his reflex tests and looked at the tremors in my hands. He reviewed my December MRIs and scans and confirmed that everything had looked normal, something that is very comforting.

However, it’s still a little bit of a mystery as to why this is happening again. I have been back to working out on a regular basis, but on Wednesday, I decided to do one of the more tougher workouts. (My ClassPass account is on hold, so I get one class per month.) By the end, my muscles were so fatigued, I felt a little wobbly. The doctor says that maybe that triggered something in the nervous system. Some of the medications I’m on, including the Zofran, also might trigger the tremors.

In the meantime, he increased my dose of gabapentin. If that still doesn’t work, they may try a medication used to treat Parkinson’s. I’m glad that my MRIs are clear but it’s frustrating not knowing what’s causing all the tremors, twitching and cramping. It seems to happen when I haven’t had much sleep, have been drinking a lot of coffee and have been stressed and that it could possibly be triggered by physical overexertion.

I feel a little sidelined again. I want so badly for things to be normal, and I continually have to remind myself that it’s going to be a new normal and I have to let go of the idea that things will be the way they were before the stem cell transplant or before the Whipple procedure or before this round of chemo. The rest of my life is most likely going to be doctor visits and symptoms and fighting off disease.

I have also been experiencing a bit of “chemo brain,” something that I have been lucky to avoid for the most part during previous treatments. I have a little bit of trouble focusing, and sometimes I can’t remember things. I’ll try to spell a word I’ve effortlessly used before and it will be one letter off—something that, as a writer, horrifies me. It takes me longer to recall recent events. I can’t remember what I did last Thursday.

There are a few bright spots. A few weeks ago, we went to a friend’s birthday party and to see a movie, and when I returned, I was pleasantly surprised to find a clean apartment. I’d momentarily forgotten that I’d cleaned that morning.

The extra dose of gabapentin makes me a little sleepier. Yet I still have a little trouble sleeping. I had a nightmare the other night that one side of my face was twitching, and I don’t know if that was just in my dream or if my face was actually twitching. I have half-asleep worrisome thoughts, wondering if, since my heart is a muscle, if that would twitch too. I did allow myself to ask the doctor one ridiculous question: Could I swallow my tongue, since it had been sore? The answer is no.

I’m still afraid to go to sleep every night, when it is worse. I get tiny bits of pain in my face and the bottoms of my feet. I can feel the night twitches as I prepare to take my gabapentin. When I sleep, I have weird dreams about dying. Last night, as I drifted off to sleep, I had an entire body twitch, as if I were a piece of popcorn popped into the air.

Overall, I’m a little disappointed that the twitchiness-pain-cramping combo is back, and that it feels worse. Mostly, I’m scared. I still feel as if I have only a few clues as to what could be triggering this and why it seems to be worse. I was feeling the beginnings of it before working out, but that seems to have exacerbated it. Friday’s blood tests appear to be, for the most part, pretty normal. Grappling with the unknown is always the scariest part.

I feel as if I’m losing hope. I am nostalgic even for times when I was depressed and in pain, like after the stem cell transplant, when I was jobless and adrift, and even after the Whipple, when I was in pain all the time and couldn’t eat. Then I feel like I had hope of things getting better, whereas now, I feel as if things are only going to get worse.

As for the cancer treatment, I start chemo again on Tuesday and am on it for two weeks, and then we have a short, four-day vacation planned. The idea was to get away between the chemo and the scan and the next steps to treat this. I hope I am still able to go. It would be nice to get away and relax for a few days before the next steps.

If you have or have had cancer, most likely you have been told you are brave and that you are a fighter. Sometimes, it’s tough. I didn’t realize how tough it would be until last week, when I discovered I would have to fight even harder for my life and my healthcare, as the government prepares to repeal the Affordable Care Act.

I have heard a few say that they don’t want to talk politics. Don’t worry; I still share my kitten photos. But it’s not just politics. It’s my life. I would say that’s personal. People who say it’s whining or that I am being a sore loser don’t quite understand. In one sense, cancer patients are dying, so they have nothing to lose. Without healthcare, they also have everything to lose. Combined, I would like to think even if we might not be as physically strong from disease or cancer treatment, we’re a powerful group.

I often write when I’m upset, and so you know I’m sad that I will probably be sicker than I planned, and at a relatively young age, and that there’s a good chance I won’t live as long as I thought I would. Through it all, though, I’ve tried to maintain a sense of humor and peace about it, even when I’m sad and angry. There’s no cure for cancer. Cancer can happen to anyone—the type that I have now is the type that Steve Jobs had. If it’s my time, I can accept that and do what I can to survive and treasure the time I have.

However, I won’t accept that I should die sooner or should be denied healthcare coverage so that households with the highest income can get a $7 million tax break. I have to talk politics, because my life depends on it. Some senators don’t want to get “bogged down” with people (people like me) dying.

I first heard the phrase “wallowing in their complacency” in my A.P. English class my senior year of high school. I can’t even remember which poem or book we were discussing but that and the idea of shaking people from their complacency stuck with me. Or at least I thought it did. I had become complacent. I voted for my senators and representatives, who are standing up against the ACA repeal, but I haven’t done enough. I’ll do the occasional donation to someone running or biking for a cause or an animal welfare group, or do a feel-good proceeds-benefit workout class or event. (I drank a lot of beer for Hurricane Sandy recovery several years ago.) I need to do more for things that I believe in.

I find myself thinking about what I could have done and what I should have done—not just for beliefs but for how I can help others. I need to take things personally and fight for them. I’m not going to be quiet anymore.

So many of you have done so much for me, but some people have asked me to let them know what they can do. The options are looking grim, and it looks as if things are going to happen sooner rather than later. Help me fight the ACA repeal, call or write your senators and reps. If you don’t do it for me, do it for children who won’t be insured, for the fight against the growing opioid crisis, or for anyone else you know who has had cancer, diabetes, Alzheimer’s, or other conditions that could be considered pre-existing.

Earlier today, my foot cramped up into a painful claw from dehydration due to the side effects from the chemo. Today, I am drinking a lot of water and taking some potassium to prepare for tomorrow. I am going to first do a cycling class to benefit a women’s organization and then I am going to the New York City Women’s March, despite the fatigue and cramping. If you think I should rest for my health, then I have news: I cannot afford to rest. I’m not going down without a fight.

I have been shaken from my complacency. I hope it’s not too late.

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.