radioactive results

Yesterday morning I was sitting in a small room, about the size of a modest walk-in closet, all alone. I had an IV stuck in my arm, not connected to anything, just dangling freely. I had my iPad on my lap with some presentations I needed to read for school, but I could not focus. My brain was all mushy. A nurse walked in, smiling, very kind and encouraging. I was being prepped to do a PET scan which would finally give us some much-sought-after answers after months of CT scans that just confused everyone. I asked the nurse if Katie, who was sitting in the lobby, could come back and sit with me. “I’m afraid not,” the nurse began, “because in about 5 minutes you are going to be radioactive.”

I glanced up at the sign on the door. CAUTION: RADIOACTIVE MATERIALS. Welp, there it is. If it says “caution,” then I guess I just asked a really dumb question. I texted Katie, “Sorry you can’t come back here, I asked, but I’m about to be radioactive.” To mess with me, she sent me a gif of my least favorite band in the world, Imagine Dragons, who had a hit single called “Radioactive.” I frowned, then smiled, and we joked about gaining Spider-Man’s powers. I had already been bitten by a spider a few years ago and now I’m being injected with radioactive materials…it’s about time that I can climb a wall or two. I think I’m owed that much.

Soon, I was indeed injected with the radioactive gunk and then I waited. Let me also add this – I was unable to eat anything for eight hours before the scan. So I was also SUPER hungry. Before leaving home I had swiped one of the kids’ Nutri-Grain bars, which was sitting on the little table next to my chair, taunting me. See, a PET scan needs that radioactive stuff – which to the best of my knowledge contains sugar – to course through your body and hit all the various areas. Cancer cells will try to eat that sugar stuff (medical terminology!) and thus, when scanned, will light up in a plethora of color that would be beautiful if it weren’t, ya know, cancer. That Nutri-Grain bar was chock full of sugar so eating it would throw everything out of whack. So I waited.

The scan wasn’t that bad. It was like an extended CT scan, honestly. The difference is, where CT scans take maybe 5 minutes, this one took about half an hour. Every part of my body was scanned. The peaceful hum of the machines acted as a sound machine to me, and I nearly fell asleep during the process a few times. When it was over, I walked out to see Katie (IV still attached because blood work was next) and devoured the egg grill sandwich she’d brought in for me. It was cold, but delicious.

After I went through my blood draws I walked to the cancer center and sat for a while, waiting to see my oncologist. Katie left to take care of some things and I again tried reading my schoolwork. I got through a bit of it but was distracted. I closed my iPad and looked around at the other patients. Most of them were older, in various stages of cancer, some obvious and some not-so obvious. My phone started to buzz – bloodwork results were filing in. Everything looked normal. My tumor markers also came back totally normal. This is a good sign, I thought. After all, my hope during this appointment was to receive some sort of finality. A man walked in and sat down at the piano behind me. He played three songs, songs I didn’t know, but they were beautiful. I closed my eyes and just let the music distract me.

Katie came back and I shared my results with her. Then my oncologist was ready for me. I walked back to do vitals – which were also encouraging – and received another buzz on my phone. My PET scan results had come in. We walked to the room to wait for my oncologist and I pulled up the results. The first part was medical gobbledygook that made my brain feel like scrambled eggs. I looked further down and saw a section labeled FINDINGS. The first part said, “QUALITY of the study: Good.”

I looked at Katie, “Hey that’s good! It says good!”.
Katie squinted, “I think it means that the quality of the scans was good.”
“Oh yeah…,” I said, as if I had also known that (I hadn’t).

Looking through the results, things seemed normal. There was something that popped off in my neck but I didn’t take too much time to think about that. Brain, heart, lungs all looked normal. Then I reached the section labeled ABDOMEN AND PELVIS.

This section showed that my organs looked good. Indicated my orchiectomy from September was visible (duh). Showed that one of my larger lymph nodes did not absorb any of the radioactive sugar. Showed that the other one did. My heart sank a little. Then a note from the radiologist: “FDG avid right common iliac lymph node is concerning for metastatic disease.”

“Metastatic,” I said out loud. I knew what it meant but had to ask anyway. “Is that…” Katie knew where I was going. “It’s cancer. I think it means cancer.” So we got to Googling, and yeah…that was it. I started frantically Googling everything in the report. My oncologist was late for the appointment which left us with a lot of time to think, Google, overthink, overGoogle, etc.

When she arrived, we knew what she was going to say. Except she didn’t say it at all. She was…positive? Kinda. Hesitant, moreso. I wasn’t sure how to take it. I knew what I’d read, and I wasn’t crazy. I’m decently intelligent. She was sure to acknowledge what she read on the PET scan results but was unable to give me a direct answer. I told her it was frustrating and she agreed. She said that my case is baffling. Remember that back in December I was set to start chemo, and then the tumor board couldn’t agree that it was the right thing to do. Part of me wondered, is this why she’s hesitant? Because we had already gone through this song and dance back in December and she doesn’t want another start and stop situation? To me, when the report says “concerning for metastatic disease” then that means we do something about it.

But she made good points. Sometimes PET scans aren’t 100% accurate. And it’s odd that my other lymph node didn’t “light up.” And it’s bizarre that these two nodes have more or less stayed the same size, ever since September 2022. Lots of weird things happening. Unexplainable. “I wish I could just take a needle and poke it, check it out, see what is going on,” she lamented out loud. She can’t – the lymph nodes are behind my abdominal wall. Getting to them would mean a big surgery. She seemed genuinely upset about not knowing what the next steps were going to be. She said out loud a few times that I could very well be continuing surveillance. After a while of deliberating, we thanked her and left.

As a result, I am just disappointed. I really was counting on yesterday being clarifying for me but it wasn’t. It just threw more questions in the mix, questions that can’t be answered by me, or just a doctor, but have to be discussed in a meeting. My body, my specific illness, rests in the hands of experts – I have to remember this – who don’t want to overmedicate me or put me through things I don’t need to be put through.

As a father of three small children, I appreciate the caution. I know it is for the best. When I looked around the room at the other patients, I recognized that treatments are hard, and not everyone is as fortunate as I am to have a curable cancer. I am well aware of this, and try to remember that every time I get frustrated or disappointed. There is a fine line to walk here where I can be thankful for the assurance I have that things will ultimately be okay but I can also be disappointed when I don’t receive the answers I need. I think both things can exist, and that’s where I am.

Right now I have a lot of things on my plate to keep me occupied and fulfilled. I have family, I have work, and I have school, and I am trying very hard to keep a focus on the things that matter and not live inside the “what if” moments. I have friends and family who have been incredibly supportive. I feel every comment, call, or text and offer to help or give food or time to us, and I have an incredible partner in Katie who has weathered every step with and for me. Writing this blog helps me as well. I have a list of everyone who has subscribed and I truly cherish that list. These are the people who care. The ones who take the time to read and send me a note or a “like” or just open the email with something I’ve written. What a gift that is, that someone cares. It’s a gift I will always carry close to me.

So anyway, the next steps are to just wait. I absolutely hate writing that sentence. But it’s something I have to do. Tomorrow the tumor board could potentially discuss my case, but it could (and likely will) be pushed to next week. Regardless, I will give all of you an update as soon as I have processed whatever data has come my way. And as always, thank you for reading along with me.