There are some words that doctors just shouldn’t throw around casually. “Palliative” is one of them. For myself, and I think for the average, non medical professional, “palliative” means death. So long, sayonara, say goodbye, hope you enjoyed the ride. Thats pretty much the only word I heard yesterday. Palliative. If I say it enough, I take its power away. Palliative.
Fuck you, Palliative.
As usual, things continue to change minute by minute, although it feels like nothing is happening. Yesterday we waited all day for the CT guided biopsy of the metastasized site, and it never came. In fact, at one point my sister asked me if Ben had gotten it yet, and I really couldn’t even remember what she was talking about. By the time she asked, I had forgotten it had even been in the ‘plan’. (I say ‘plan’, because lets face it…there is no real plan. I’m starting to hate that word too.)
We were also waiting for Dr P. I no longer even remember how we knew we were waiting for Dr. P. I’ve re read my previous blog post and I don’t see mention of him, so I have no idea how I knew we were waiting. But we were. And we waited.
Eventually the school day ended and I picked up Raegan to come out and visit Big Daddy B. Jaime wasn’t feeling well and I didn’t want to risk her getting Ben sick, so the poor girl went home to sleep. In any case, Beth and I brought Rae to see her Daddy, who was higher then a kite and kept falling asleep and then jolting awake. It was funny and a little sad at the same time. I’m starting to get used to funny and sad together.
Just as we were about to go home Dr P walked in the room, so Beth took Rae for a walk while Dr P talked to us. It was a long talk, and a long exam, and all I heard was “palliative, palliative, palliative.” Its hard to listen when your mind just won’t connect to what is going on around you, and your body betrays you, the room is spinning, and you feel like you’re going to toss your cookies all over the room. Palliative, palliative, palliative.”
Eventually, after quite a long time, I believe I stammered something about “palliative” and not quite understanding why he was using that word. Dr P then went on to say that there is a difference between ‘palliative’ and ‘terminal.’ Well now, why the fuck didn’t you say so in the first place?? (Oh look, there’s that graceful Wendy coming out again.)
So, in doctor speak, ‘palliative’ means pain control. Basically, Dr. P said he cannot cure Ben, but he can treat him. Fine. Treat him until you can cure him. That is now the plan. Treat him until you can cure him. Treat him until you can cure him. I will repeat that phrase to give it the power that I took away from “palliative”.
I would like to share the new ‘plan’, but I really can’t because, quite frankly, I forget what it is. We really needed Barb there to hear Dr P’s ‘plan’, but of course since we didn’t know he was coming, Barb couldn’t be there. I do know that the first part of the plan is radiation. That starts today, and will continue from Monday to Thursday next week. If you recall me mentioning the “unique” radiation and a transfer to VGH, well that is not happening. I cannot tell you why because I don’t remember. But there will be no unique radiation, no spinal surgery, and it sounded like Dr P was not advocating removal of the kidney either. I understand none of that, because I know Dr A wants to remove the kidney, and I know Dr B believes the kidney should come out. We will deal with that later, because we know the first step is the radiation anyway.
I think there is a biopsy somewhere in the near future. I think.
I think there has to be several days prep for the biopsy. I don’t know what that entails. I can’t remember.
Even though I can’t remember many bits and pieces, there are some things you can never forget. You can’t forget hearing the word “palliative” in reference to the Love of Your Life. You can’t forget the feeling of desperately wanting your baby girl removed from the hospital so that there was no risk of her overhearing, or seeing your legs buckle as you try to stand strong beside her Papa. You can’t forget looking at your beloved and hearing him say “Ok, ok, ok” as though this were a perfectly normal conversation, while you just want to take all that pain away from him.
Still, Raegan wasn’t there so she didn’t hear or see. And my legs have stopped buckling and they are strong again. And Ben will be treated until they find a cure. Ben will be treated until they find a cure. Ben will be treated until they find a cure. Those are the words that have all the power.
Ben Will Be Treated Until They Find a Cure. Repeat after me. Ben Will Be Treated Until They Find a Cure.
And now I’m heading back up so say good morning and take My Man some coffee. Its a new day, and I am feeling strong again. Because Ben Will Be Treated Until They Find a Cure.