I’ve seen a lot of waiting rooms in the last month. Big ones, small ones, with hard plastic chairs and comfy faux-leather recliners. They all have the same five magazines, though. People, Us Weekly, Sports Illustrated, Men’s Health, and Sport Fisherman’s Monthly. Some of them have TVs, which are almost always tuned to HGTV, showing reruns of House Hunters or Flip or Flop. These programs are designed to be as vanilla and non-offensive as they possibly can be, even though they are depicting the real-world struggles of couples having to decide between which of three caribbean islands to purchase, or agonizing over whether to add the tennis court or the infinity pool to their mansion.
All of this is to distract you from the fact that they’re going to bring you in a room and tell you that some part of you is broken.
When we saw the three doctors before our vacation, we knew that things weren’t good, but two of them had told us that things looked benign. We asked them point blank whether we should go on vacation, and they said that we should, so we did. For a lot of reasons that made sense then, and still do now, it was the best choice, and I’m glad we had that time to relax and be together.
I got a call from Surgeon 2’s PA with some preliminary biopsy results last week: a leiomyosarcoma, which is a cancerous mass originating out of muscle tissue, and usually aggressive in nature. We saw him in person yesterday and got the first face-to-face confirmation of what I’m facing: surgery to remove the tumor, and under his breath, probably some of my bowel. This thing is big enough that it’s taking up most of my pelvis and the rest of my organs are shoved up under my ribcage, but my bowel is where it should be and somewhat compressed. He was positive and nonplussed, scheduling surgery for October 2 to go in and get it out. We thanked him and left, feeling cloudy on the details.
When we first got opinions we didn’t get to meet Surgeon 3, from Johns Hopkins. We’d been referred to the bone guy in his group, who came off like Debbie Downer, and we decided to go with the other two opinions because they came from soft-tissue experts. Today, we met first with an Oncological Radiologist in his practice, who sat us down and explained how Hopkins was thinking they wanted to shoot it with radiation for five weeks before attempting surgery, so that the chance of recurrence in the future would be smaller. So according to him, the timeline to surgery moved back to somewhere in late November. Then we went to meet with the surgeon.
Surgeon 3 is a warm, pleasant fellow, who immediately explained what their collective thinking has been, why they were recommending radiation first (and possibly chemotherapy to help) before cutting, and what that would mean for recovery. What I’m looking at–and this is preliminary–is surgery to remove the mass, some of my bowel (if the tumor is leaching into other tissue) and possibly some of my bladder. While those parts heal they’d do an ileostomy for a few weeks while my guts heal up before reconnecting the plumbing.
He then answered our questions, in the clearest way possible, giving us the worst-case scenario because that’s what he’s supposed to do. I was stunned at this point, which is why I brought Jen with me to help navigate the details. When he answered the life expectancy question by saying five years is the standard measurement, I almost threw up on his pretty shoes.
I know they have to manage my expectations, and they have people who have gone ten and fifteen and twenty years after cancer. I know this is a rare and mean version of cancer that could come back anytime, especially given how big it is now. I know human bodies are imperfect machines that make no sense and do what they want when they want to.
I just want enough time with my girls to be here for the important stuff.