Posted by Stephanie 10pm CST from the apartment Houston, TX
Well, somehow I have managed to yet again stump the Dr. Benny. Leave it to me to perplex the world’s top sarcoma specialist. Yes, this means that something’s going on. Allow me to try my best to explain.
Dr. Benjamin’s very first action upon entering my exam room was to walk over and start pressing around on the area just to the left of my initial surgery site (what we fondly refer to as my ‘chest hole’). Not much for wasting time. 
He felt it for a few seconds, then looked at me with a twinkle in his eye and said, “Has somebody been beating you up?” “Of course not,” I say. “So you haven’t had any recent trauma there?” I shake my head no. “Okay, just checking.” When I asked him why, he went on to say, “Well, because there’s something weird going on in there.” Oh goody.
Gotta back up for a second so I can explain something before we keep going forward. I’m not sure it’s ever been mentioned previously by me in a post, because it’s never been of any importance, but ever since my original surgery, there’s been a shadow/outline of a soft tissue segment just to the left of the resected sternal area that has appeared on CT scans. Because of the rearrangement of that area of my chest, it wasn’t visible until post-surgery scans, and radiologists and doctors have always believed it to be residual thymus gland that wasn’t removed during surgery. It’s never done anything but be there, unchanging, in every scan for years now. It was there, as usual, on my previous chest CT from December of last year, but on the scan I had done last night, that area looks very different—it’s turning into bone. Calcifying, as they technically call it. Evidently, that’s a strange way for it react, because when I asked what would cause it to do that, and why it would be happening now, Dr. Benjamin looked at me and said, “I don’t know what it is, why it’s doing that, or what to do about it.” Oh goody. According to him, there are two things that could cause that reaction, but neither of them make sense in my situation. First, it could be something called ‘fatty necrosis’, which happens when there’s major trauma to an area. As the area heals, soft tissue can calcify. But, I haven’t had trauma to that area anywhere in recent history. He then said, “Could this be tumor related activity? Yes, it absolutely could be, but that area has never been active, and never shown up as a hot spot on a PET scan, so it just doesn’t add up.” If it is tumor activity, evidently the calcification would be a sign that the tumor is responding to chemotherapy and “healing”, so in his mind if it is cancer activity, it’s at least activity in the right direction. However, the lung metastase I had in 2007 was a mutation of my original osteosarcoma and caused bone to grow instead of be destroyed, so what’s to say that this isn’t a repeat of that?? What’s unnerving to me is the fact that if it is indeed tumor that has decided to wake up and be active, it did so in the middle of me receiving treatment which is meant to keep that from happening. Ugh, I shouldn’t let my mind wander about this—that will get me nowhere.
I got to see with my very own eyes what he was talking about. He brought up split screen on the computer the scan from December and then the scan from yesterday. On the December scan, you can see the soft tissue area, dark gray, just next to the aorta (yeah, that’s a scary spot for it to be). The spot is the same size in the scan from yesterday, but instead of being all dark gray, it’s now flecked and streaked with white—not solid, but at least half calcified. Now, to me, on the scan, that area looks huge. However, it also looks on the scan like my aorta is as big around as a golf ball, and obviously, that is not true, so it’s hard to say how big of an area we’re talking about. I asked exactly where this was—in the lung was my first guess. He said it’s actually in the mediastinum, which is the space in your chest between your lungs. So, it’s somewhere in there, right next to my aorta, just hanging out. Oh goody.
At this point, I asked what exactly the plan of attack was. Do we try to figure out what this is with more tests, or continue chemo? His response—we do both. Because he’s stumped, he wants to consult his ‘friendly neighberhood radiologist’ (his words, not mine) as well as Dr. Swisher (my thoracic surgeon) and his team in the hopes that they can shed some light on things. In the meantime, he wants to continue with more methotrexate, because, if this is tumor activity, obviously we need to keep hitting it with stuff. I asked how many more rounds he was thinking. He shrugged, which prompted me to ask, “Or are we just going to wing it?” “Don’t we always have to with you?”, he chided. He said he thinks maybe four more rounds, but again, we don’t know anything for sure, because we have no idea what we’re really dealing with here.
As if this all wasn’t enough to process, he then said, “At least I don’t think they’ll have to do much to get at it, they can probably go through the opening that’s already there.” Oh, you’re going to take it out? Um, yeah, apparently. He said he’d like to have some of it. Well, preferably all of it, since he doesn’t think it belongs in there anyway, behaving like this. So, looks like more surgery, too, although, again, he can’t tell me when they might want to do that or how they’d do it, since we are dealing with something strange and unknown. At least I continue to live up to my title of ‘medical freak of nature’. “Haven’t I had enough weird things happen to me?” I asked him. “Your case has been weird from the start, this is normal for you,” he replied. Sad,but true. I guess the good news is that despite learning this, Dr. Benjamin doesn’t seem alarmed. Confused, yes, but this is not a huge setback, or something catastrophic, and I feel confident going forward that success at the end of treatment is still in my future.
I think that’s it for all the big important points—I’m sure I’ve forgotten something, but after a day like today, can you blame me? I mean, I knew we might go in and hear that we need to do another couple of rounds, but I never expected to hear that they’ve found something on the scans, and even worse, it’s something that can’t be explained. Not news I was anxious to have to share. Sammy, obviously, was upset, and not even so much by the fact that we’ve had another wrench thrown in things, but more by the fact that we don’t have an answer about what is going on or when it’ll be resolved. We’re used to curve balls thrown our way, but learning that life will not, as we had hoped, get back to normal anytime soon is hard to take. I am thankful that he’s got spring break coming up—it’ll be a good solid week of time for us to spend together. That’s more than we’ve had in months!
Alright, it’s off to bed with me. I know I promised Reba stories, but after news like this today, and then chipping a filling (yeah, that happened at lunch, good times, gotta get that fixed too) and then still being puffy and tender despite all those steroids, well, the fun stories can wait. Hope everyone is well, and I hope to talk to lots of you soon. Some contact and encouragement from those I love will come in handy while we face the next few weeks. Goodnight all.
--Steph
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