Today was a crappy day. I mean that literally. Earlier, I found myself crouched on the fairly busy sidewalk outside a Quest Diagnostics trying to transfer poop from one sterile container to another. But my lowest point, mood-wise had been before that, when I knocked over the specimen container in a public restroom and spilled whatever clear test liquid was in the container into the sink. As I waited in the Quest waiting room for a new container, I cried and felt deeply sorry for myself.

The Quest test is because I’m not feeling any better as far as the digestive issues go. In fact, I feel a little worse. I’m a little bit thinner—to my high school weight, which looks ridiculous on a grown woman—and a little bit weaker. Most days, I feel sick for a bit in the afternoon, followed by some mild discomfort, and then in the evenings, it’s nausea followed by some sweating, sleepiness and two bouts of discomfort before I get hungry right before bed (but am too afraid to eat). It’s almost a routine by now. (Right now, for instance, it’s after dinner, so I’m trying not to throw up, while I listen to weird noises emanate from within.) I had been on the BRATTY diet (bananas, rice, applesauce, tea, toast, yogurt) and it helped a little bit, but not much. (Another low point of this past week was when I made myself a toast sandwich and put some mustard and a few pickles on it so I could pretend I was eating a real sandwich but that each bite was just the end part.)

Even though recovery takes six to eight weeks, after five weeks, I should feel better than I do. Hence the need for samples to check for bacteria or infection. I was told to get a sterile sample cup, which I eventually procured at a nearby urgent care. When I arrived with my sample at Quest, however, I didn’t realize I needed three samples, and Quest doesn’t want you to contaminate their bathrooms, so I was sent off with gloves and two more containers to divvy things up elsewhere—outside, at home, in another bathroom. Anywhere but there. So I found a public restroom, and then knocked over one of the sample cups, spilling the chemical into the sink. (I was careful not to contaminate that bathroom.)

Dejected, I returned for a new sample cup. Quest was closing soon, and I didn’t have time to find a new bathroom, so I stepped outside to make the transfer. Now I feel terrible about it, but at the time it seemed like my only choice.

I’m also getting pancreatic enzymes, which CVS doesn’t have in stock, because I might not be producing enough digestive enzymes. I guess this is fairly common after a Whipple procedure. They are hoping that the enzymes clear things up in a week or so. If I do have enough enzymes, though, and these are extra, then I’ll get abdominal cramps, something I’m not looking forward to.

I’m tired of being sick, and I’m worried that I’ll never feel better. I didn’t expect this setback. I don’t always feel terrible, but when I do, it seems like a long time. I’m worried that I’m becoming bitter. I found myself jealous of the people who were heading into restaurants to eat, or running errands, or anyone who wasn’t carrying a container of feces with them, really.

After the stem cell transplant a few years ago, I felt optimistic as I recovered, but this time, I feel like everything I want and everything I thought my future might hold is slipping away from me, especially with such a strong likelihood that this cancer will come back within five years. Instead of a house or a family or vacations, I see bills, debt, loneliness. And I see death, too, as a possibility. Of course, it’s always there, I suppose, for all of us, but the high chance of cancer for a third time definitely puts me at a higher risk for that—sooner—and for a lower quality of life. As it is, all the chemo and radiation from earlier treatment has nearly put me into osteoporosis, something I found out right before I had surgery.

I find that I’m unfavorably comparing myself to everyone—friends, acquaintances, people I read about in the news, even book characters. I’m jealous and I’m worried that will crystallize into bitterness, and that scares me, because I don’t know who that person is.

Of course, I’ve been spending a lot of time by myself—more, as it turns out, with this blip in my recovery, than I thought. I had just started to venture out and eat real foods when I started to feel bad a few weeks ago, and now I mostly stay at home. If you have posted a vacation photo, funny animal photo or something witty online in the past month, chances are, I’ve responded immediately. I’m not even worried that people will think I have nothing better to do, because I really don’t.

OK, that’s not entirely true. I started working remotely last week, and that has been good for me. And I have a freelance assignment with a nice far-off deadline. And I take a lot of photos of the kittens.

So I’ve had too much time to think, which has left me death-obsessed, angsty, depressed and broody—basically my teenage self. (I guess it’s not just my weight that’s regressed.)

Keeping busy is good, but I can’t overbook myself since I have to have time for my bouts of physical illness, whether I’m nauseated or need a nap after walking too much. In My Age of Anxiety, which I am still reading, the author talks about Robert Burton, who wrote The Anatomy of Melancholy, a giant tome he completed in 1621 that has everything to do with melancholy, as the title suggests. Anyway, this quote from Burton seemed appropriate: “There is no greater cause of melancholy than idleness, ‘no better cure than business.’”

So here I am: Spending too much time with myself is depressing. I think some things finally fell into place: the fact that I had two different cancers, and that it’s probably going to come back, for one. Oddly, that doesn’t upset me as much, since I have little control over that. It’s everything that I do have control over that’s bothering me, and I feel as if I’ve made a lot of mistakes that I can’t undo. I feel like I need to do something, yet I also am afraid to do anything. I feel like everything I do is wrong.

Tonight, as I waited for my post-dinner nausea to pass, I curled up with the cats and called my mom. As I told her about my day, she said something that surprised me. “I don’t know how to say this,” she said, “but I’m pleased and proud of the way you’ve handled this.” She also said I didn’t complain much, and that also surprised me: I complain mainly to my boyfriend, but she would be a close second, followed closely by this blog.

After feeling like a dealt with a lot of crap today, it was what I needed to hear.

Comments

  1. Kate says:

    Hey – I really do not know why I haven’t commented before… But I am now, so here goes. I had HL mid 2014 and found your blog googling “abvd hair loss”. True story ????.
    I love your writing. I enjoy your take on things and I cried about the kitties. I just got caught up with all your news and I’m feeling a tad pissed off at the world. I just wanted to say, I’m thinking of you. I live a zillion miles away in Australia so I can’t offer to come hang out so you’re not alone too much, but I can email, if you’d like.
    Thinking of you xx

    • apainintheneck says:

      Thank you so much for your comment and kinds words! It definitely cheered me up after a rough week. Sorry I didn’t respond sooner. I finally have some good news: I’m starting to feel a little bit better and have been able to get out a little! It sounds like the HL is behind you–congrats! Mine is now too, though I have the pancreas stuff to deal with now, obviously.

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