Tired

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.

To-Do Lists

Weeks ago, a concerned friend sent me a message to make sure I was OK after a dearth of social media posts. I emailed her back to let her know that it’s not for any health reasons. In fact, I’m feeling well enough that things are somewhat back to normal. Honestly, I’ve been busy and not busy, and it’s been the latter that has been inexplicably keeping me from getting things done—like updating this blog.

On that particular day, I was actively avoiding social media because it was right after the Game of Thrones finale, and I was several seasons behind, so I was worried about spoilers. Now I’m caught up and can freely peruse the internet.

As a freelancer, I seem to usually swing from having no work to having a lot to do. The no-work times aren’t as fun and carefree as you might think, since I spend the entire time stressing out about not having work. I also tend to get depressed and listless, so not only am I not working, but I’m also not getting the things done that I tell myself I would do with time off (like updating my portfolio). I find myself half-heartedly doing tasks at a slow pace.

I spend much of the time on pointless worrying. I was comforted by the story I saw about the study that found that most people feel better doing something than doing nothing. Basically, this study confirmed what Louis C.K. told Conan O’Brien months ago. Without things I didn’t absolutely have to be doing, I felt adrift.

Since I felt as if I should be devoting all my time to finding work, I didn’t update the blog either. I have a bunch of posts I never finished. But now that I have work to do, I also feel as if I have free time to blog. Oddly, I feel as if I can’t have only free time—it has to be balanced with work.

I’ve also had trouble focusing, and I can’t tell if this is just not having structure, or if it’s “chemo brain,” which I just read has been proven, according to a new study.

To help myself focus, I’ve been going back to making to-do lists. Sometimes I write things on my to-do list that I’ve already done, in order to cross them off and feel as if I’ve accomplished something. Someone suggested I put “write to-do list” at the top, so I can cross it off immediately.

I even put “blog” on my list. Though the dent in my list is small, I made some progress today. Below are some additional things I accomplished today that were not on my list, as well as why they’re important.

Reminded my friend that he owes me $1 million that he lost in a bet to me last night. He thought that an old Saturday Night Live skit featured Jimmy Fallon, but it was Chris Kattan. I also reminded my boyfriend that he owes me $8,999,975 over a few ill-advised bets about ‘80s songs. If they pay up soon, I can retire. However, seeing as they’re also writers/editors, this is unlikely. Perhaps my time would be better spent seeking friends who are foolish enough to make such bets with me, but who also have the funds to pay. I’ll put that on my to-do list.

Read about Jessica Simpson’s wedding. This was really important for several reasons. I’ve kicked my celebrity gossip habit, for the most part, but I continue to involuntarily collect useless pop culture knowledge. Often, they’re tidbits so obscure, they don’t even help me out in trivia. I can’t even talk to anyone else about this information. I’m pretty sure all of this is crowding out things that I need to remember, so I’ve cut down on gossip intake.

However, I decided recently that it is part of my civic duty to read at least some new celebrity news to avoid the alarming instance of recycled old news I’ve seen presented as new. Last week, I was irrationally irritated when I saw Ryan Gosling was trending, and it was a decade-old story about how he and Rachel McAdams—whom he later dated—didn’t get along on the set of The Notebook. I’ve known that for 10 years, since the movie came out. (Not that I’ve seen the film. It looks mushy, and I have a cold, cold heart.) But this was being presented as news! You can imagine my outrage—and subsequent relief to learn that he is trending today for a legitimate, new reason.

You know who has seen The Notebook? Jessica Simpson. She apparently saw it on an airplane and she decided she wanted a love like that, and that’s when she decided to divorce Nick Lachey. Why do I know that? I don’t know. As I said, I retain useless knowledge that I read years ago.

For this trip down the aisle, I saw a headline that said she went for a Great Expectations theme, so I had to click to learn more. I’ve read only part of the book, but Charles Dickens’ description of the bitter spinster Miss Havisham has stayed with me. Jilted at the altar, everything in the house is left as it was the moment she found out the groom wasn’t coming to the wedding. From what I remember, she sits with the clock stopped at that time, wearing only one shoe, the wedding dress sagging on her withered frame. Settings for guests are left out, a dusty cake goes uneaten.

I pictured the wedding in a cobwebby mansion with the bride in a yellowing dress. Also, Havisham’s not big on love, so it seemed like an odd choice. To my mild disappointment, the wedding was based on the 1998 movie. Still kind of weird, because it’s just an OK film at best. I listened to the soundtrack a lot, because I liked the songs from Pulp and Mono, and the Tori Amos song was good. Anyway, I hope Simpson’s finally found her Notebook love.

Now that I think about it, it’s my pop culture knowledge that has won me the millions currently owed to me. So the five minutes I spent reading about the wedding could pay off big some day, provided I bet the right person with the funds to pay up. Yes, this was a worthy pursuit.

Played the theme songs to Game of Thrones and Orange Is the New Black to see if my fatter cat has a Pavlovian response and associates these sounds with begging for ice cream as I watch TV. He does not. I conclude that this means my ice cream habit isn’t as dire as I feared. Or maybe (possibly) the cat isn’t as smart as I’d hoped. This was science and clearly very necessary.

Watched some internet cats. I don’t do this as much as people seem to think, but in my defense, I was celebrating crossing something off my to-do list, and the video is very short.

Wrote this blog. Oh, wait, this was on my list. Phew. Time to celebrate…

Unofficial Visitors Policy

Some of you have asked about visiting, and as Greta Garbo was famously misquoted as saying, “I want to be alone.” I think.

That’s not to say I don’t want to communicate via Internet and phone. I had a few visitors during my most cognizant stay, when I felt the most well, and that was nice. But this isn’t going to be any fun. I wouldn’t be there if I didn’t have to.

The worst way to put this is that I’m going to get burned from the inside out the first five days, followed by seven days of being continuously poisoned intravenously. Then I’m going to be sick and sleeping — and, according to what I’ve heard, in a zombie-like state. Someone who’s been through a stem cell transplant said people came to see her, and she didn’t remember. The last week, I’ll be recovering, but I still expect to be in a haze.

I hate to be one of those people who inspires a Dear Abby letter. If you really want to come visit, you can. I think it’s nice that people want to, and I don’t want to hurt anyone’s feelings. But honestly, I’d rather see people when I don’t feel the worst I’ve ever felt. Everyone’s been so supportive and nice, so I do feel bad. But again, that same person who had been through this said that there came a point when she had to ask people to leave and she had to learn how not to feel bad about it.

If you happen to be around and want to drop by, that’s OK. But if you plan to come to New York specifically to see me in the hospital, please don’t. Unless you’ve always dreamed of coming to New York without the obligation of seeing me very much.

I just honestly believe I really won’t be up for visitors. Like I said, that could change. I won’t have a roommate this time, so I won’t feel pressured to win a popularity contest. (Because you know I’d feel a little rivalry.)

If you’re worried I’ll be bored, I don’t think I will be. I grew up as an only child on a cul-de-sac with no other kids. I’m used to entertaining myself. And I really do think I’ll be sleeping a lot, if augmented ICE was any indication of how I’ll feel.

It’s possible I might change my mind, at least for that chemo week, before I enter the zombie part or “hell week” as it’s sometimes called. (I’ve thrown up on most of the people I’ve gone to college with, so this might be your big chance to join that exclusive club.) You can check with my boyfriend for the latest!

Here are the rules for visitors.

Visitors have to have received flu shots for this season. My boyfriend is going to get his first flu shot ever. I can’t say anything to its efficacy. I’ve had flu shots and I’ve not had flu shots, and I’ve never gotten the flu. (Well, not ever. I had it once in second grade and I had the worst flu ever—nicknamed the Thanksgiving Disease by my group of friends who survived that terrible 1996 plague—in college.) That said, I’m really bummed that this whole procedure is going to obliterate my immune system. My old immune system was pretty great, and I rarely got sick. Except for the cancer. So I guess it’s back to square one.

Visitors must wear face masks, gloves and sometimes gowns. I hope most people wear formal gowns and tuxes when they come to see me anyway, but the hospital will provide gowns. (I don’t think they’re hospital gowns and I don’t think you have to get naked under them, but if you do, that’s your choice.) If you wear a face mask, I’d like you to pretend you’re in the band Clinic.

Visitors can’t have any germs. Well, they can’t be sick at least. No cooties!

No kids younger than 7. As much as I complain about missing my cats as a cat lady, this must be a very sad rule for parents of young children undergoing stem cell transplants.

No live animals or plants. The last time I was in the hospital, a bed bug-sniffing beagle came around as a precaution. I had a scheme to dress the cats as beagles, but I decided not to compromise their dignity by disguising them as dogs.

After the transplant, I want to see everyone, but that’s not going to happen right away, sadly. I’ll be back to square one with my immune system, so I have to stay away from crowded places for three months. I realize New York City is a pretty crowded place. But it’s advised to stay away from places like grocery stores at peak times, something I try to do anyway because I work at home and don’t need to rub elbows with the hoi-polloi. (I assume this also means the train, which is supposedly “filthy” and officially plagued by “schmutz.”) I have to avoid people with colds and viruses and such, especially for the first three months.

Post-transplant, I’ll also probably have trouble concentrating or remembering things. (I know some of your will say I had trouble with that before — insert comedy rimshot here.) It’s something referred to as “chemo brain,” a lingering mental fog.

So far, I’ve noticed this only a few times, after emerging from ICE. In one case, someone sent me an email about one thing and I kept responding to the subject we’d discussed in another email. It’s been hard concentrating during chemo, when the fatigue sets in, and afterwards, when I awake from my days of sleep. After that, it’s a bit like Lazarus rising from the dead or Sleeping Beauty awakening from her spell—or at least how I imagine it would be—it takes a little bit of time for me to remember everything that was going on before I went into chemo-induced hibernation. If I feel as if I’ve been asleep for a thousand years after a few days, I think a week or two will be harder to recover from.

In any case, please bear with my forgetfulness and general confusion—as you always have. I will remember an anecdote in detail from 1999, but I can’t remember my keys. And I get some very different things mixed up as it is. I sometimes get Gary Numan and Randy Newman mixed up. Oh, and Billy Bragg and Billy Squier. I also get Tinder and Grindr confused, so it’s a good thing I don’t online date. Mostly it is confusing to me. If you’ve talked about one of these subjects and I’ve looked puzzled, I’m just working this stuff out.

So in short, it sounds like, for at least three months, I’ll be easily tired and worn out, but I can slowly start to get back into the swing of things. And visit—or don’t. I’m just going to be exhausted, and I might smell like garlic.

Hopefully I’ll be almost back to my old self by my birthday in October!

Rushing to a Stop

As always, I am struggling between ambition and laziness. I usually resolve this by sitting all the way back on my pillows and typing with my keyboard on my knees. But since the ABVD and ICE, my circulation hasn’t been as great, so my hands go numb in this position.

All night I tried to resolve the nonstop, self-imposed chaos that I’d subjected myself to before the hospital stay. Work or work out or have fun, but always stay as busy as possible.

What happens when you don’t stop then have to stop all at once? A cliché. Now that my body has come to a screeching halt, my mind spins aimlessly like a top landing on incongruous topics.  One night in the hospital, in a semi-sleep state, the murders from my mystery book haunted me and it fell to me to solve them. What was the connection between all these killings? I fretted, as I tossed and turned. How would I catch the killer?

Not even a seemingly innocuous book about food entrepreneurs provided relief. All that night, I wrestled with questions like: What is the valuable lesson a food entrepreneur can take away from this chapter? What’s the business takeaway here?

And somehow, in my dreams, I also had to figure out my own medications and cure my own disease. Everything was on my shoulders for my busy mind to solve.

I’d wake up, thinking I had the key to my book dilemmas or medication schedule only to be confused. Not even fully realizing that it wasn’t my problem to solve, I’d slip into another restless sleep, rushing to solve another problem.

All last night, I had similar dreams. I’m worried about the “chemo brain” or brain fog that I’ve heard accompanies these treatments. That’s what keeps me from doing more. Sending out misspelled, crazy missives. Or half-formed thoughts, like the ones in my dreams, darting away before I can get hold of them.

Mostly, I feel a little sleepy all the time. Like I could just lie down anytime and take a nap. The good thing is that I can. But it often doesn’t mesh. At times, it feels as if it’s my brain that’s sleepy and my body that feels wide awake, as it should after unlimited sleep. Yet it’s my body that’s actually taking it easy, as my blood counts drop and the chemo hits. My mind races around, trying to finish up last minute chores and assignments.

My digestive system is similarly not in sync with itself, but this is on purpose. From what I understand about these anti-nausea drugs, they work in your brain, not in your stomach. I could be wrong, but according to what I’ve heard, my stomach lining is well aware of the chemo and would be reacting accordingly. But the drugs tell the brain not to worry and in effect, not to be nauseated. (Essentially, that makes my stomach look unfairly like a liar.)

To be safe, I’ve been sticking with mild foods like oatmeal and soup. But another part of me — the unwise part — wants a big bacon cheeseburger. Every now and then, I get a little pang from my stomach, letting me know that, while everything is under control, don’t push my luck.

So I find myself on this hiatus of sorts, where I do what I can and what I’m up for. I can resume being a prolific Facebook poster, for instance.

It’s somewhat of a relief to wake up and not have a looming list of to-dos. I wouldn’t suggest cancer as an excuse for a staycation or a reason to take it easy if you can find another way. But I think that I haven’t taken some time for myself since before I lost my job this summer. Or before I found out about the cancer. I can’t even tell you the last time I truly relaxed without something else nagging me.

As I slip into a cat-like existence of naps and nothing, I still have to learn to let go of everything I felt I should be doing. When I get a good night’s sleep, not peppered by frantic problems, real and imagined, then I’ll be successful.