After falling asleep while reading in bed and waking up with my head tipped back and my mouth hanging open, I went into the bathroom to brush my teeth. When I got back to bed to settle in for the night, I noticed that a big spot on my T-shirt was kind of wet and sticky. I realized that the top part of my surgical incision has been leaking. It seems like the fitting end to the day—at least I hope it’s the last sad event of a bittersweet day and not the beginning of another sad day.

I changed T-shirts and called MSKCC’s hospital number for a professional opinion. The doctor on call said that unless I had a fever or didn’t stop leaking for a few days (!) I should be OK. My body might just have excess fluid that it is trying to get rid of. Currently, I’m sitting on my couch leaking my excess fluid out of my belly. While I’m sitting here, alone and scared, I figured I could cry some of my excess liquid out too. It hurts my abdomen to cry too hard or to laugh too heartily, though, so I’ve been trying to keep my emotions in check since surgery.

Today, as a day, hasn’t been particularly rough. I spent a lot of my time on the Internet and watching TV and I think maybe staring off into space, as I’m still taking painkillers for the belly pain.

At some point, however, I realized that it was three years ago on February 26 that I was diagnosed with Hodgkin’s lymphoma. If someone told me in 2013 that three years later I would be recovering from surgery for another type of cancer, I would have said, “No, thank you.”

This particular day, over the past several years, has had its ups and downs. Three years ago, obviously, was tough, when my doctor called me in to tell me that my needle biopsy showed I had Hodgkin’s lymphoma. The treatment was supposed to be wrapped up by September of 2013, but since I had two spots that wouldn’t go way (one lymphoma spot and the other, as it turns out, this pancreatic tumor), February 2014 saw me trying to remove stubble from my head after one round of augmented ICE chemo, preparing for my stem cell transplant. In my Facebook feed, a photo from that day showed up. It was a bittersweet picture: My recently departed cat, Akasha, putting a comforting paw on my hand, since my arm was inflamed with phlebitis at the time and I was in a lot of pain.

Aww...

Akasha comforting me two years ago, when I had a case of phlebitis.

Last year was good—so good, I didn’t even commemorate it with a blog post. I think I was too busy having fun and getting my life back. I’d passed my January scan and had just started a new full-time job. I was done with cancer. The little blob on my scans was just something to keep an eye on, but nothing to really worry about.

Today, of course, I spent as part of my long recovery from my Whipple procedure to remove the neuroendocrine tumor from my pancreas. (I still have about six and a half weeks to go.)

I tried not to think about this anniversary too much, until I woke up realizing I’d sprung a leak and found myself too afraid to go back to sleep. Even now, all I can think is that I’m simply tired of having cancer. I feel like I just can’t anymore.

I had been talking to some cancer patients before my surgery for a story I had been working on, and one woman going through treatment told me how she and her husband ” just go through it.” There’s no other way to put it. You just go through it. No one gives you a choice to opt out of cancer. If someone did, I would have said after the first year that I would not like to deal with cancer anymore, and I would have said it after the second year, and I would say it this year too. But no one is asking, and even if someone did ask, it doesn’t matter, because I still don’t have a choice.

I try to stay upbeat and put on a brave face, but I have these moments. I am scared and I’m so tired of cancer already. I don’t want do to this anymore, but I just have to keep going.

In the meantime, while I’ve been writing this, I think I’ve stopped leaking, both from my belly and from my eyes, so my mind is at ease. Now I’m going to wrap myself up in blankets and get some rest, to prepare for the better days ahead.

Comments

  1. Janet Holleran says:

    So sorry you’re going through this…I wish I could hug you right now…how about prayers of healing instead?

  2. Mary Frederich says:

    I can’t even imagine what you are going through, but your words help me to understand. If nothing else, please know that there are many people who love you and think about you and worry about you. I hope that thought gives you some strength and some happiness in a very unhappy situation. I don’t know what to say that will help you in any way, but I love you and pray for you.

    • apainintheneck says:

      Thank you, Mary! I really appreciate it. Everyone’s thoughts and good wishes really do help, especially when I’m feeling alone.

  3. nino says:

    This too shall pass. I am rooting for you and I believe you will win this battle. YOU CAN DO IT. Here’s a virtual hug (or pat on the back if you’re not into hugging strangers on the interwebs.)

  4. […] I wrote my last post, I was feeling pretty low. I didn’t want to deal with cancer anymore. Sometimes, when you put […]

  5. Renn says:

    Josie, I’m just catching up to the ordeal you have recently gone through, and I’m so sorry you have had to deal with so much.

    For what it’s worth, the pathology on my breast cancer tumor also came back “well-differentiated,” which means slow growing (vs poorly differentiated, which is more aggressive). It’s like a game of opposites; it sounds bad but it’s actually good. Im hoping for the same for you! I’ll keep a better eye out for your posts. I have been blog remiss lately. Hang in there and here’s to nonleaky healing!

    • apainintheneck says:

      Thanks! I still have a lot of questions for the doctors when I see them next month! Right now I am going to focus on recovering from surgery and then figuring out how I’ll deal with this if/when my tumor comes back.

  6. […] Right now, the healing incision in my belly and the adjustments of my newly rearranged organs give me pain, but nothing really ever compares to the pain of hospital bills, does it? Go ahead and tell me that you’re going to shoot so much poison into my veins that you will have to harvest my stem cells to rebuild my immune system. Make me lie down for long periods of time while you radiate my organs and burn my esophagus so much that I cough pieces of it up weeks later. Slice me open and remove organs and organ pieces and reroute my digestive system so that I’ll end up spending hours in gaseous pain with sore abs. I can handle that, even when I have moments when I am sure I can’t anymore. […]

  7. […] Right now, the healing incision in my belly and the adjustments of my newly rearranged organs give me pain, but nothing really ever compares to the pain of hospital bills, does it? Go ahead and tell me that you’re going to shoot so much poison into my veins that you will have to harvest my stem cells to rebuild my immune system. Make me lie down for long periods of time while you radiate my organs and burn my esophagus so much that I cough pieces of it up weeks later. Slice me open and remove organs and organ pieces and reroute my digestive system so that I’ll end up spending hours in gaseous pain with sore abs. I can handle that, even when I have moments when I am sure I can’t anymore. […]

  8. […] Right now, the healing incision in my belly and the adjustments of my newly rearranged organs give me pain, but nothing really ever compares to the pain of hospital bills, does it? Go ahead and tell me that you’re going to shoot so much poison into my veins that you will have to harvest my stem cells to rebuild my immune system. Make me lie down for long periods of time while you radiate my organs and burn my esophagus so much that I cough pieces of it up weeks later. Slice me open and remove organs and organ pieces and reroute my digestive system so that I’ll end up spending hours in gaseous pain with sore abs. I can handle that, even when I have moments when I am sure I can’t anymore. […]

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