I wanted to share a story of early in my whole treatment, an adventure with having T-Cell Lymphoma that illustrates a really important point. I had a tumor in the back of my leg, above my hamstring, the doctors weren’t exactly sure what it was, so they had done a needle aspiration, where basically they stick a needle in your leg and try to scrape out the tumor, which was not successful, so they were going to go in and remove it. I go into the hospital to have the surgery, they knock me out, they take a small portion of the tumor, and send it down to pathology while I am still knocked out on the operating table. At that point they still weren’t able to sort out exactly what it was and it was a big deal because if it was cancer (which it turned out to be) then they take not only the tumor but a whole bunch of other tissue with it, and if it’s not cancer then they just chop out the tumor and off you go.
They had gone through that process, we went through the first surgery, and pathology was inconclusive, so they essentially just sewed me back up and left the tumor in its place. So probably three or four days later I go in to see my cancer surgeon and he’s like well you know we’re still working through it with pathology and we’re not really sure what we’re going to do next and of course I’m ready to go and asking how soon I can have the surgery to get it removed and he’s like well you know we might just let the medicine take care of the tumor and I’m like really medicine, I’m no idiot, I knew at that point I had cancer. But I also knew at that point they weren’t totally settled on exactly what it was, so forcing the issue at that point probably wasn’t going to be super productive, so once they did get the full results back they decided to not only have another surgery to remove the tumor, but I got sent on my way for chemo and eventually radiation.
So what’s the moral of the story here? There’s two points that are really important here. 1.) You have to listen to your doctors. I knew at that point I was in big trouble. 2.) You have to kind of get a sense for where your care team is in respect for what they’re trying to figure out for you. They may not have all the answers at the time and that’s okay. It’s stressful for sure, but you adding stress to the pile by making a huge point of it and making a huge issue of it isn’t helpful. Give them time to do their job and give them the respect they deserve. They’re just trying to help you. They’re not holding anything back to be difficult, it’s just sometimes everything isn’t a straight line in terms of treatment.
That’s a little bit about how I found out I was sick before I was actually diagnosed and a couple things to remember – pay attention, be nice, and give your care team the time they need to sort out what they’re trying to do to fix you.