At my very darkest times this winter, I would sometimes go to the waterfront and sit in the cold, looking at the water, willing myself to jump in. I didn’t, of course. The frigid, dark water was uninviting and I don’t like being cold or, I can imagine, drowning. Then I remembered I was already dying in two ways: the cancer was trying to kill me, and the chemo trying to kill bits of me—the cancerous cells. It was a darkly funny twist. Almost.
I acknowledge that it was a terrible thing to think of doing but I just needed to address the dark thoughts to dismiss them—confront the them and watch them retreat.
Now, months later, as far as I know, I am cancer-free. I’m really lucky to have had only one tumor that could be ablated. I’m so grateful. And yet…I don’t know what to say to people when they ask me how I am or how I’m feeling. My peripheral neuropathy has been steadily getting worse. The numbness, cramps, and twitching have been frustrating, and I start to feel sorry for myself. That is promptly followed by guilt when I think about how grateful I should be about the tumor removal.
I’ve always wanted to get through a bout of illness and be better again, and just be done. Now when faced with possible chronic pain, I’m disappointed. I’ve been trying to put on a brave face, and I think it’s only recently when that brave face seems more like a mask that I’ve had to examine the mess that’s underneath.
I’m kind of a mess.
I also feel like I owe everyone an apology. I’ve been spacey, possibly from the gabapentin or the neuropathy. I owe people thank-yous and emails and texts and lunches and times-we-said-we’d-get-together-but-haven’t. Sometimes all I can do is stare out into space, and other times I am obsessively Googling my symptoms, looking for something new on the same peripheral neuropathy sites I’ve visited before.
I also owe the people who I have spoken to in the past few weeks or few months apologies for maybe seeming distant or like I’m not able to follow the conversation. I sometimes use the wrong words and have to stop taking to cast around for the right phrase; sometimes I’ll give up trying to find the right word and let my sentence trail off. Sometimes I open my mouth to say something but just don’t bother.
I sometimes forget what I’m talking about while I’m actually talking and so I have to use context clues—the words coming out of my mouth. What was I saying? I wonder, scanning the face of the person I’m conversing with for confusion. Why am I talking about tiny dinosaurs? That doesn’t even make sense. This person should probably find someone better to talk to.
I’ve been trying to seem as outwardly normal as possible while grappling with a lot of weird physical sensations. Sometimes it feels like I’m moving through something heavy, or like I’m out of sync with everyone else, talking too fast or too slow. Sometimes I feel as if a needle has jabbed me in the face. My legs go numb. I wake up with arms that are completely asleep. Sometimes I wake up because of a calf cramp or sometimes with sore calves from them cramping in the middle of the night. When it’s really bad, I can see my toes wiggle from side to side and see the twitching under my skin. I bite the back part of my tongue and I’m not sure why. The nerves in my face feel as if they’re subtly moving. I get an ache in what feels like the middle of my bones. I sometimes get a pain in my left ear.
I always feel as if I have a subtle electric current running through my body.
It’s not the pain that’s unbearable; it’s the fear. I’m almost always scared. I am almost never relaxed.
Right now, I have a pins and needles sensation in my feet, which are also twitchy. I have weird sinus pain and the optometrist says my eyes have been cloudy because of inflammation, but I’m not sure if it’s related or not. It feels like the nerve fibers in the back of my legs are going pop-pop-pop, like popcorn is being made inside my legs and causing tiny twitches when they hit the outside of my limbs.
Phew. I needed to get that out. I haven’t known what to say when people ask me how I am. I usually say something about feeling way better after the ablation but mention that my neuropathy is getting bad. It’s one of the reasons I haven’t posted a blog in awhile. Everyone wants a happy ending, and I didn’t want to spoil it.
As for face-to-face interactions, I feel like I can’t have a normal conversation with the ebb and flow of words. I just have to spew out words quickly before I forget them and lose my momentum. I also feel like I’ve run out of things to say. I’ve said everything there is to say in my lifetime; I didn’t budget my words and now I’ve run out and just have to repeat myself indefinitely. Mostly I talk about cats. I feel myself brightening when the subject turns to cats because it’s a subject I don’t have to think too deeply about. Talking about my kittens’ antics is more of a party conversation than how now that I am not expected to die as soon as I thought, I feel panicked and guilty and worried I’ll be plagued with chronic pain for the rest of my life. Plus if I forget what I’m talking about, the context clues are easy to follow—tails, whiskers, soft fuzzy bellies, cat birthday parties etc. (Speaking of cat birthday parties, I recently found myself talking to someone else who threw a birthday party for his cat, and though we both laughed and said we of course had other reasons to throw the parties, there is really no way to say that you’ve had a birthday party for your cat without really sounding like a weirdo, even when you are talking to someone else who has hosted a cat birthday party and you are comparing cat cake photos and you realize you both own the same sweatshirts with cat ears on the hood and a special pouch for a cat.)
I’ve also felt like a failure. (Not because I threw a cat birthday party; that’s an obvious success). It’s strange, because I’ve been pretty content with my life until recently, and I’m not sure what’s been making me so personally unhappy. Sometimes I still can’t believe my luck; I’ll be riding the ferry to work on a beautiful day and I feel like throwing a hat up into the air, Mary Tyler Moore-style. Yet increasingly I find myself comparing my life to others’ lives and coming up short. I think the cost of cancer hit me—not only financially and physically, but the realization of time lost. Four years have passed, and other people have done things—have had children, for instance, while I’ve had cancer. After a lot of time spent slogging through treatments and tests, keeping my head down while trying to keep my chin up, I’m looking around and wondering what happened to these years.
I’m jealous of those with good health. I’m jealous of my previous healthy self, and I resent her for changing into this. Everyone seems happier and better at everything. I don’t begrudge others their happiness, but I feel as if I’ve failed in trying to really find my own.
I didn’t used to have many regrets, but now I find myself thinking about things I should have done differently when muscle twitches wake me up in the middle of the night. Yet I think about all the kindness I’ve received from friends (and even strangers) and I think that I must have done something right. I’ve surrounded myself with good people and that, I think, is one of the main keys to happiness.
Then why am I so miserable? Even with so many supportive people in my life, being sick and being in pain is isolating. It’s a personal thing, between your mind and your body. It’s consuming. I’m someone in pain instead of the person I’d rather be. I’m afraid to stray too far from home or make many plans. Most of the things I used to do and ways I would have identified myself seem to no longer apply. I’ve lost myself.
I’m mainly someone with peripheral neuropathy who is worried as to why it’s getting worse. I’ve been taking a lot more gabapentin to keep the symptoms at bay. One neurologist assures me that I’ll probably get better, that my nerves are oversensitive and will calm down. December’s MRIs, right after the shingles diagnosis, were normal, as are my blood tests. My EMG tests, where they test the electrical signals in the nerves, are a little off but haven’t gotten any worse since early this year. A biospy showed small nerve inflammation and nothing more. This is all good news, and yet I don’t know why I have so much pain, numbness and cramping, and why it’s been getting worse. There is one more test: a spinal tap to look further into the possibility of demyelinating neuropathy. (Before that happens, there needs to be a blood test that has to have the correct codes so we don’t get charged the full price from Quest, so I’m not sure when that will happen.) I’m also panicked because of the healthcare bill; I’m on a deadline to get test done before the unknown and it doesn’t look good.
For now, I’m trying to get the pre-spinal tap tests scheduled. (Also, I’m going to watch the movie. I know it’s crazy that I’ve never seen it.) Instead of working to create the illusion of keeping it together, I’m going to concentrate and maybe actually trying to pull it together. Not all of it, just some.
In the meantime, when you see me, that’s why I might seem out of it or forgetful. If I seem like I’m having trouble with a normal conversation, just ask me about my cats.
The 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.)
