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.





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.