I Will Always Have Cancer

The other day, as I waited for news of my MRI, I thought about how it could be the last time not knowing I had cancer. Because it feels like you don’t have cancer until the doctor tells you. It could be something else. It could be nothing. My liver was clear.

But. I went in today to what I thought would be an uneventful follow-up with my oncologist. I talked to her about my neuropathy, which has been flaring up again since Monday, and I added, “I’m happy about the scan, though.”

The liver was clear, but, I have a small tumor now in my pancreas (or what’s left of it after the Whipple). For now, they will keep an eye on it. If it doesn’t grow, then it remains a tenant of my pancreas. If it grows, then they will do a  new scan that picks up even the smallest of tumors, and then they could treat it with something that’s currently being approved by the FDA.

But. I will always have cancer. The tumors will probably keep coming back. They will treat it like a chronic disease. I have years. Maybe decades. Steve Jobs had eight years.

I should have known. I let my guard down for a day and a half and now I’m more disappointed that I thought I could be. I was preoccupied with my neuropathy, which flared up with a vengeance. Electric cramps in my foot last night had me howling with pain. I was exhausted, but every time I relaxed enough to fall asleep, a cramp would jolt me awake. After some gabapentin, the pain went away, but the electric current running through my body never left. A friend described it as an “electrical storm.” I fell asleep with my glasses and the light on, because I didn’t want the pain and the cramps to sneak up on me. Against logic, I felt vigilant with sight and light. I fell in and out of restless light sleep, often with a purring cat curled up on my chest. I noticed only this morning that I have a small scratch under my nose from a well-meaning night kneading.

Everything today feels a little surreal and dreamlike because of the lack of sleep and gabapentin. My face is twitchy. I’m so tired and so awake. I’m not sure why it flared up again, though I hadn’t been able to sleep and I had been so concerned about the scan and the healthcare bill vote, I actually worried myself sick.

This is old hat, so I am going through the emotions quickly this time.

Grief: Crying on the train is oddly cathartic. Alone with your grief yet surrounded by strangers. It might be my favorite way to cry.

Self-Pity: I thought of big picture things I’d be giving up first. I have so many things to think about now that things have changed again. It’s like I had just put down my rug–it wasn’t even flat against the floor yet–and it was pulled out from under me.

Anger: When I got to work, I thought of trying to bum a cigarette from one of the smokers outside. Smoking is bad for your pancreas, and I am angry at it. Someone told me, “It could be worse.” That is the wrong thing to say to me right now.

Last night, when I couldn’t go to sleep because of the pain and tingling, I thought, “It could be worse. I could have cancer too. At least my scan was OK.”

Relief/Denial: In a way, knowing that the cancer is forever for me is a relief, because I’ll never have to go through hearing the news again. And again. And again. And again. This fourth time–four and a half if you count the refractory lymphoma not going away–will be the last time.

 

Good Scan

This afternoon, I had my MRI and there’s good news: there were no tumors and my ablation spot is healing nicely. Phew! I celebrated by going to a cycling class.

My neuropathy is making my feet tingly and cramp up, but I’m going to try to not let it get me down. I have some treatment options and I’m trying to get as many tests out of the way before this healthcare vote. I’ve had my life saved about three times. Maybe my winning the cat T-shirt means I have six more?

 

My Old Friend Scanxiety

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.