As I sat having my blood sugar checked before my PET scan yesterday, the new fall screensaver reminded me I’d seen all the seasonal photo montages at Memorial Sloan-Kettering, starting in with the winter pictures. I think. I definitely remember the spring flowers and the summer beach scenes before arriving yesterday to find that the computers are now showing fall leaves.

I got the results of my scan today, and right now I’m not sure when I’ll stop being so familiar with those screensavers. It looks like I might see the fall scenes on a regular basis a little bit more than I’d hoped. As I mentioned before, while my first scan after two cycles (four treatments) showed pretty dramatic improvement, but my scan after four cycles (eight treatments) hadn’t shown much improvement. Yesterday’s scan, after my twelfth—and what I had hoped to be final—chemotherapy treatment, didn’t show much improvement either.

There are two areas that are showing up as inflamed—one in my chest where my trachea divides and one somewhere near the belly. Since they’re not going away, they’re going to do a biopsy surgery and find out what exactly they’re dealing with, what to do next and why they’re not going away.

Apparently, Hodgkin’s lymphoma can mutate sometimes into another lymphoma. I hope it’s not that. Or they could just be inflamed areas. I forgot to ask what that could mean. What could be in there? An actual fire in my belly? Swallowed gum? Shards of shattered dreams? Venomous words I swallowed instead of spitting out in anger, slipping down my throat and forming a poisonous mass?

I meet with the thoracic surgeon on Monday for a surgery consultation. After the surgery, I might even have to stay overnight in the hospital, something I’ve never done before. I’m a little nervous about the surgery for all the usual reasons, as well as for my irrational fears.

Before my neck biopsy in March, I was mostly afraid of saying something weird while I was being put under. Or awful. What if I just insulted people randomly while I was out of it? I collected other post-surgery stories—tales of a doctor obsessing over his colleagues seeing him naked in the operating room; a loopy teenager turning to his mom and imploring, “Don’t tell my mom;” someone trying to jump from a moving car.

In the end, of course, nothing happened—nothing I remember. I scanned the nurses’ faces for any signs of an earlier awkward interaction. Had I made any threats? Demands? I don’t think so.

In addition to my anxiety about saying something crazy, I have a new fear, thanks to watching the first episode of The Walking Dead. It’s not really a spoiler, since it’s the first episode, is it? Well, I’m about to reveal the premise: A guy wakes up in the hospital and there are zombies everywhere. (I’m still on the fence about continuing to watch. This guy’s lack of follow-up questions irritated me. How did this happen? Maybe it’s explained in later episodes, but I might watch Boardwalk Empire instead.) It’s also how 28 Days Later started. So now that the zombie thing is fresh in my mind, I have to entertain the possibility of waking up to a world of the undead.

After the biopsy, then I’ll also have the results to worry about. That, perhaps, is the scariest part.

After the meh PET scans results last time, I didn’t allow myself to be too hopeful yesterday, as I let the radioactive material course through my veins and drank my raspberry-flavored Gastrografin. I’ve always wanted to ask if there’s a flavor other than red raspberry or if it’s labeled to give the illusion that there are choices. A storyteller I saw once says it tastes like “robot piss,” but I don’t know what that tastes like. I think it tastes kind of like Faygo red pop in that it tastes red, not really specifically like a red fruit.

Of course I would have preferred that this was the end. On Refinery29 last Friday, I saw a video of what a year of chemo looks like, as documented by one woman, and the entry in her blog when she talks about “clinging to normal” resonated with me.

I get a little bit of a return to “normal” life, even if it’s only for a few weeks, or a month. Although not fully normal—everything’s kind of on pause. Muffled. I’m in a weird limbo, waiting to find out what’s next.

The good news is that I’m cleared for working out and I don’t have to be quite such a bubble girl (again, for now, but everything’s temporary, really). I am signed up for kickboxing tomorrow, though with my sore left leg (from a flu shot) and my slightly sore and swollen arm from chemo, I don’t think I’ll pose much of a threat. (Because I definitely did before.)

Another bright spot: I am cleared for sushi and oysters now, as well as restaurant salads! I see a few $1 oyster nights in my future. Beyond that, it’s uncertain.

Comments

  1. Kimberly Repcik says:

    Thinking of you and praying for you. Truly admiring your strength and approach to kicking HL to the curb!

  2. Mary Frederich says:

    Josie, if good thoughts, love and prayers can make you feel better, you should be feeling like superwoman any time now. I am so amazed by your courage, your humor, the clear expression of your vulnerability. Your writing always moves me to tears and laughter. I am so happy that you’re my friend! You can store your lunch in my fridge any time :)
    Hugs!!!!

  3. […] out in a flood of tears and angry words. (The type of angry words, by the way, that I think are stuck below my trachea and causing the abnormal PET scans.) I won’t, so that’s why I’m writing it down […]

  4. […] gone, but the radiation or the four days of chemo seems to have removed some residual anger. I’ve wondered before if the stubborn spots lighting up on my PET scans were angry words that I swallowed and lodged in […]

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