I am supposed to lie down until tomorrow. When I do stand up for too long, I get a headache and throw up, so it’s a pretty strong incentive to stay put. Yesterday morning, I realized I had a post spinal tap headache, something that is supposed to be fairly uncommon when they use smaller needles, but I often fall into the exceptions category.

The headache is caused by a reduced spinal fluid pressure on the brain and spinal cord. If I don’t get better after bed rest for a few days, then I have to go back to the hospital for them to patch up the leak.

oldphoneThe lumbar puncture itself wasn’t bad at all. There was some initial confusion; I actually got a call from the hospital asking where I was after I checked in. I didn’t answer because of the great outdated no-phone sign in the waiting rooms showing a ’90s-style cellphone. After I saw other people using their phones, I got a photo, because I assume it meant no carphones. Once the check-in issue was cleared up, I went back and changed into my gown. New York Presbyterian definitively has the best hospital socks; also, the hospital wardrobe included pants in addition to the gown, so I say that it sartorially receives the best hospital I’ve been to. (Medically, it ranks pretty high too, along with MSKCC.)

The nurse and the fellow doing the procedure explained what would happen and then they took me to the room, and the fellow reassured me he would let me know what was happening. Once I was in the room where the procedure was being done, I laid on my stomach and they prepped my back with a marker and soap. The main doctor came in and introduced himself and consulted with the fellow about his plan. The fellow was very nice, and when I was telling him that my neuropathy felt better when I was on antibiotics, he was saying that some people had reported that happening. “There’s so much we don’t know about the body,” he said. “It’s humbling.” He said that when a friend graduated from med school, the speaker said, “Fifty percent of what you’ve just learned is wrong. And we don’t know which 50 percent it is.” I personally found it comforting, especially in light of not knowing what’s causing my neuropathy and my cancer prognosis. Something new is always being discovered.

The lidocaine is usually the worst part; luckily the stinging and burning lasts only for seconds. Beyond that, I felt just a bit a pressure when they put in the needle, but it wasn’t even as much pressure as a bone marrow biopsy. Then they filled up some vials with spinal fluid, and I was all done. I just had to wait about a half hour in the room since they were all booked and then I was free to go.

I am hoping that my leak heals up on its own by tomorrow; otherwise I may have to go in for it to get patched up. Relaxing hasn’t been too bad, but I should have read more or caught up on more TV shows. Instead I spent too much time on the Internet and too much time inside my head and got depressed. My moods have been peaks and valleys lately, and it may take some time to even out.

I will find out the results of the spinal tap next Monday. I don’t know what I want. If it finds nothing, then my neuropathy is still a mystery. But if it find something, then there is something to find, and that might not be a good thing either. Test results are always hard.

Yesterday, I went to a cat party to benefit a cat shelter and entered the cat-themed costume contest. At first, I didn’t expect to even be a contender, because in New York, there’s always at least one to two people who go over the top. (New York is a good place to feel like you’re failing somehow and there’s something more you can be doing, from your career to a costume contest.) As a cat lady, I have a lot of cat-themed items, so I wore my cat print dress that my mom made me, cat earrings, a cat necklace, a paw bracelet, lion shoes and a cat scarf, and I topped off my look with a cat purse and cat ears. Sure enough, three women were dressed in Victorian outfits, carrying lacy parasols and pushing a vintage baby carriage with two cats, who were also dressed up and wearing hats. But there were only five people in the contest and three prizes, so I got my hopes up a little bit to take third place. (An adorable little girl with a cat mask, a cat dress and cat paws was a shoo-in for second.)

When the faux Jackson Galaxy announced the winner for third, I was Michael Keaton putting my acceptance speech back in my pocket at the Oscars when they named the girl in the bouncy cat dress. I can’t control my face, so I hope I didn’t look too disappointed, but I know myself and I hope I never see any footage. Was the mention of my cat underwear too much? Did I not get enough applause? Did I seem catty while sizing up the competition? I’ll never know, especially since I don’t like being onstage or being in the spotlight, so I don’t remember things very well when I have to do something like speak in public. My mind actually blocks things out, so I don’t fully remember interviews or presentations or even sometimes instances when I have to speak to a group of strangers; once these events over, there are blank memory spots and everything’s in soft focus.

After my loss, I thought of my scan tomorrow to see if any neuroendocrine tumors have come back and I did what I often do when I deal with my scanxiety: draw a line between two unrelated things that have no bearing on each other. Since I lost this, does that mean that I’ll also be disappointed in the scan results? Or does this loss mean that I’ll have a good scan?

It doesn’t mean anything, other than I need to invest in a bouncy cat dress or train my cats to sit in a carriage and wear hats if I want to get anywhere in the cutthroat world of catlady competitions. I actually worry that I haven’t been worried enough about the scan, and so I’ll be devastated if the cancer is back. It’s my mind trying to convince me that I have some control when I actually don’t.

Tomorrow I sit in the MRI machine, and then I meet with the doctor a few hours later. Don’t have cancer, I tell my body. Stop it.

In the meantime, I’ve been trying to have fun and ignore my peripheral neuropathy as much as possible. I also decided to extend my time off from freelancing a little bit, so I can have less money but more fun. Freelance work doesn’t actually take up that much time, but it’s always at the back of my mind, like that Peanuts episode where Charlie Brown has to read War and Peace over winter break. (I reference this episode a lot because I feel like this pretty often, but I often get a blank stare, so I feel like I might be the only person who so vividly remembers this Peanuts situation.) Last weekend, after a Nine Inch Nails cycling class, instead of rushing home to do work, I got an ice cream cone wrapped in cotton candy and met with a friend in Central Park. After an early morning workout, instead of trying to get some stuff done on the computer, I had time to take a stroll with a friend to Union Square.

Friends have even commented that it seems like I’m doing a lot of fun things. I am. I’m having fun. I’m going to concerts, taking the ferry to and from work when I can, exploring the city, riding my bike, spending time in the community garden, and even taking some road trips. However, I still feel as if I owe people I’ve seen an apology: Sometimes I’m not always completely present and am preoccupied with the neuropathy. The pain and numbness always seem as if they are in sharp focus, and everything else is a bit blurred.

The neuropathy colors my experiences in strange ways. For instance, sometimes when it’s bad at night, I wear a different T-shirt to bed, because a plain T-shirt seems more appropriate if I have to go to the hospital than some of my goofy old tees (like my big thrift-store Playboy bunny logo shirt, my idea of sexy nightwear).

Every time I make plans, there’s an asterisk or a footnote “*if I feel well enough.” A few weeks ago, we went up the Hudson River valley to Kingston and Hudson, and I felt terrible. A sinus infection had been slowly building, and I was dizzy and my sinsuses felt inflamed and twitchy. I finally went to the doctor for antibiotics the day before we left. The infection seemed to make my neuropathy worse, and I felt so awful, when we met the innkeepers, I felt bad because they seemed nice and I was worried my ghost would haunt their property and I would miss my boyfriend if I were a ghost so far away.

At that point, my head felt so bad, I thought I would need to lay down when we were walking around. My leg felt like it was bent at a weird angle one morning and it took a little while to become unstuck. It feels sometimes like I have Barbie limbs and they will get stuck if I bend or strain them. Once the sinus infection started clearing up, I felt much better. Far from 100 percent, but not terrible. I’m down from five to six gabapentins a day to three to four.

I even worked out eight days in a row, which is huge. Not being able to work out has really bummed me out. I still have to take it pretty easy, but it’s something. I’ve been packing my social calendar while I’m feeling better. I’m always worried my health will be taken away from me. I’ve seen a few neurologists, and they are of the opinion that this will all clear up on its own. I am getting a spinal tap to rule out chronic inflammatory demyelinating polyneuropathy. If it is, then there may be ways they can reverse the damage. If it’s not CIDP, then hopefully it goes away on its own or it’s just something that flares up every now and then and I’ll deal with it. There are treatments in the meantime I can opt for, including Cymbalta.

I hope my MRI is good tomorrow. I hope I learn from all of this. Maybe I am. I just got a call that I won something at the cat party raffle and wondered for only a second if this turn of luck would change my scan results. It doesn’t mean anything, except that I’ll have a great pizza cat shirt by the end of the week.

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.

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.