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

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

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

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

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


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

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

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

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

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

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

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

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


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

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

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

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

Last Friday, I got a call from the interventional radiologist’s office to schedule an upcoming ablation consultation for today, as well as a call from my oncologist’s office explaining what an ablation entails. As I jotted down the message, I spelled it “oblation,” which is “a thing presented or offered to God or a god,” and synonyms that include “sacrifice” or “offering.” I pictured the radiologist plunging her hand into my body, closing her fist around it, and lifting it up victoriously with both hands like the priest of an ancient tribe making an offering.

The reality is less dramatic—slightly. The treatments sound a little bit like what is used to defeat sci-fi monsters or superhero villains, including sub-zero cold (as they used to defeat The Blob, which I just watched again for the first time since when I was five or six). There’s also intense heat or even alcohol (something, it could be argued, I’ve applied to my liver on my own). At today’s appointment, I found out that my procedure is on April 21 and the most promising route is both embolization and ablation.

According to the CT scan I had weeks ago and previous imaging, it looks as if I have one tumor that is getting increasingly large. For one tumor smaller than 3 cm, they would do an ablation, using a rod to burn out the tumor and about a 1 cm surrounding perimeter. My tumor has grown to 2.5 so it’s on the larger side.

An embolization is typically used for multiple tumors to stop the growth. It’s not really curative, but it would stop the symptoms and I could go in for touch-ups. Though the scans don’t show multiple lesions, the embolization will show any that may not have shown up. If there are multiple tumors, then they will do only the embolization.

If there is only the one tumor, then they will go ahead and do the ablation for a one-two punch and have a clear idea of where to put a thermometer at the edge of the tumor. “Like a meat thermometer?” I asked. Kind of, as it turns out, though it won’t pop up when I’m done.

After that, I spend one to two days in the hospital while they give me antibiotics to lower the risk of infection. One of the main reasons they didn’t do ablation first is because the way my digestive system was rerouted during my Whipple, I’m at a higher risk for developing an abscess, a 10 percent risk. With my gall bladder and part of my pancreas and part of my bowel taken out, there’s greater risk for bacteria to get into my liver and cause an infection. If this happens, then I’ll get a drain for a few weeks.

The best case scenario is that I have just the one tumor that can be burned out, and that might give me a break from cancer for awhile. I almost don’t dare hope for that. The odds are rarely in my favor, and I always seem to fall into the unfavorable group. I’ll find out when I wake up after the procedure what has happened.

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.



Another beach view.

Another beach view.

Balcony view.

Balcony view.

Balcony at dusk.

Balcony at dusk.








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.





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.