This is the time where it would be advisable for someone to lock me in a closet for a couple of days. Lock me up and render me unable to type, so I won’t say something stupid and burn a very important medical bridge. Here I sit, feeling like I’ve been dipped in hot french fry grease, itching from the top of my head to the soles of my feet. Looking around and nobody’s come to lock me up, so I’ll continue.
<Pause>, while I argue with myself.
Should I say it?
Maybe I shouldn’t.
Hell, I know I shouldn’t.
I’m trying so hard to keep this disease from making me irreparably angry. Irreparably, as in I can’t recover from it and return to being a non-angry person. A little anger is a good thing. But, if I can’t recover from it, I’ll become Jack Basset, and I damn sure don’t want that (even though I love Jack Basset and he’s never been angry with me…until now).
I have now been officially told that I’m not going to be given another dose of HD-IL2 at Duke. That my creatinine soared too high during the therapy and that it didn’t rebound back to baseline quickly enough after the last dose was given. I’ll reserve comment on that for now (an uncharacteristic show of discretion).
Here’s what I have asked Dr. George:
• What are your plans for scans to determine whether HD-IL2 round one, part A’s 9 doses have benefitted me?
• If those scans show efficacy, what will we do next?
• If those scans show disease progression or disease stability, what will we do next?
• What about the tumors in my left adrenal and right kidney? Is there a surgical option to remove them and under what conditions?
These are the questions I’ve posed in an email to Dr. George this afternoon and I’m waiting for his reply.
I’m particularly agitated right now because I’m so itchy, but I also feel untethered. Dr. Pippas has spoiled me. When I was (and, technically, I still am) under his care, he made me feel like I was the only patient he had. This is a gift that man has that is more valuable that gold. I felt connected to him. He had my back. He always knew where we were and knew what to do next if something went awry, and he communicated that to me when we talked. And, we talked often.
Right now, I feel like I’ve been thrown out of the community pool and I’ve got a hankering to swim, but I’ve got no place to do it. I have active tumors in my body and with the news I got this afternoon, there isn’t a plan in place to deal with them. Dr. George may well have a plan, but as I sit here right now, I don’t know what that plan might be. I don’t like feeling this way.
I know I’ll hear from him, even though it wasn’t on Tuesday as I was promised. What I have to realize is that the Duke operation is a large, regional cancer center, not a community cancer center. That comes with all sorts of volume demands on the gifted doctors who practice there. I marvel at how much these doctors have to do to manage their case loads and still have time for research. I know all of that. But, I am fidgety as hell when I want information and it comes more slowly that I want it to. Right now, I am just fidgety. And itchy. These things don’t play well together.
I either need a tall glass of Woodford Reserve bourbon…..
JUST HEARD FROM DR. GEORGE: We have set up a phone call for tomorrow afternoon. He’s got some time when he’ll be traveling (not driving) in a car that we can talk. I expect much will be accomplished with this call and that I’ll have some direction about next steps.
or a massage, or some sleep, or to be dipped in a large vat of motor oil, laced with coconut butter or all of the above. I probably should just throw this post out and start over, but that would be dishonest. I intend to chronicle my life with this cancer, the good parts and the bad parts. This is one of those not so good days and I feel like I should talk about it.
I am looking forward to my talk with Dr. George tomorrow. Maybe the pathway will become clear again. I need for that to happen.