It’s Official: I’m Unusual

It’s been medically confirmed – I’m unusual.

First, the good news: I’m done with MOPP. Today was day 14 of the post-MOPP time period and SuperCoop says I’m not going back on MOPP again. As I sit here typing this, I’m drinking a Coke and eating a giant size Mr. Goodbar. It was such a nice change to be able to look at the candy counter and realize I could eat anything I wanted.

Now comes the bad news. We’ve had a lot of it around here lately, so feel free to skip over the next part if you’ve had enough.

The results of my PET haven’t changed. I still have uptake in the anterior portion of my mediastinum. SuperCoop is as stunned as we are. Well, as stuned as Barb and the rest of the family are. I’ve been feeling pessimistic and depressed the past few days, so it was no big shock to me. Perhaps it will hit me later. Here’s hoping it doesn’t until sometime after I’ve called the parents.

So this one area in my chest has been lighting up since day one. The “unusual” thing about me is, this is the only part that was lighting up on the PET when I initially saw SuperCoop for the SCT referral after ABVD. At that point in time, I was having all of my old Hodgepodge of symptoms – the itching, the night sweats, the itching, the fevers, the itching… you know the drill. Therefore, it was assumed that this was the Hodge, ’cause it wasn’t showing up anywhere else in my body and my body was obviously still under the impression that the Hodge was running rampant through my veins. Or lymph system. Or whatever.

He doesn’t feel this is sarcoidosis, mainly because I have never had any sarcoid-like symptoms. Plus, I had the Hodge symptoms when we started all of this. We brought up the possiblity with him because some of the folks on the Hodgkin’s forum have had positive PET uptake that wound up being sarcoid. He also doesn’t think this is another kind of cancer, also primarily because of my initial Hodge symptoms. I brought up the “alien in my chest” theory, and I should point out that he didn’t definitively say I didn’t have one, so I might still be right about that.

What in the hell’s in my chest? Well, he’s thinking it might be thymic rebound or thymic hyperplasia. These may be interchangeable terms – I haven’t looked them up yet. Basically your thymus is really active when you’re a little kid, because it’s trying to make up for your weak immune system. As you get older and your immune system gets hardier, the thymus eventually fades away. Occasionally when you’re going through a lot of chemo, the thymus will start up again, since you’re messing with your immune system. About the only way for us to know if this could be the case is to do a biopsy.

There are a couple of tricks with that. First is the nature of the Hodge itself. With a lot of cancerous tumors, you can do a needle biopsy to find out what’s going on. The cancer is pretty dense within the mass. With Hodgkin’s, the cancer cells are more diffuse. This means you actually have to get a pretty good piece of tissue and stick it in the blender to see what’s going on. This is why they usually remove a couple of lymph nodes to do a biopsy for the Hodge.

Tricky part #2 will be getting to the area of concern. There are lungs in front of the area and a heart and aorta behind it. SuperCoop’s going to talk it over with a thoracic surgeon to see just how difficult it will be to try to do the biopsy on me. Probable answer: very. He thinks they have some sneaky ways of getting to it nowadays, though.

So now we get the ultimate wait and see. SuperCoop’s going to talk to the radiologists first and see if they agree that it could be thymic rebound. Then he’s going to talk to that thoracic surgeon.

Right now everything hinges on what he finds out from the other docs. If we can do a biopsy, we’ll get that scheduled and done. If not, we’re going ahead with the BEAM and SCT. He’s giving me a week off either way it goes so I can keep recuperating from the MOPP. He was stunned that the MOPP hit me as hard as it did, but it looks like the extreme fatigue was a cumulative effect. Tomorrow will be one year since my first ABVD treatment and I’ve been on some form of chemo ever since with no breaks. It’s been a loooooooong year and I’m still not done.

I’m really hoping the thoracic guy says a biopsy is doable. One, so we can find out what in the hell’s going on and two, if it is thymic rebound, SuperCoop might be willing to let me wait on the BEAM/SCT until we close on our new house. That would mean I could spend the SCT recuperating time at home rather than a hotel, which would rock.