And it keeps getting better and better
November 9, 2010
tags: bone metastases, brain metastases, breast cancer, Cancer treatment, cyber knife, gamma knife, metastatic breast cancer, triple negative breast cancer
- Last week I went in to see the neurosurgeon thinking we were going to talk about cyberknife for my back, which is absolutely the most painful thing I have ever felt.
- As it turns out he wanted to talk about my brain, specifically the one lesion that looks like it’s growing.
- The radiation oncologist had just wanted to watch that thing for a few weeks and do another scan.
- The neurosurgeon wants to drill a hole in my head this Thursday and take a piece out to look at it. He wants to see why the radiation didn’t work on that spot.
- What if it didn’t work? It could mean they’ll physically take it out (with possible brain deficits), do a different kind of radation, or whatever. I could be untreatable and it could kill me.
- This is not what I was exepcting that day or I’d have taken someone with me.
- I went home and talked with Hank. That was last Wednesday. We both felt that God was telling us just to not say anything to anyone at that time.
- I am having no brain symptoms. The neurosurgeon did all the tests…. stand with your eyes closed, touch my nose then touch your nose, all that stuff.
- The only symptom I’m having now is incredible pain and increasing numbness down my left leg. I can barely walk on that side. I can’t take pain medicine because I’m allergic to it. When I talked with the neurosurgeon I had been on steroids for two weeks and hadn’t slept for more than two hours at a time. I begged for Ambien and got it, though for some reason he’s worried about my getting additicted it. I didn’t jump down his throat, rip his heart out and throw it against the wall, but I thought about it. Never never never never give a woman steroids and then play with her mind.
- On Thursday the neurosurgeon called the gamma knife people who did the brain surgery on August 2. Apparently there’s a very rare thing called “radiation effect” or something like that where a lesion that has been treated can appear to be growing (and this one looks like it also has a second one attached to it), but it actually is not. The gamma knife people recommend another scan next week. On Friday the neurosurgeon said he’d go up the gamma place and look in to a similar case and get back with me.
- The neurosurgeon forgot to tell me that he went out of town and won’t be back until tomorrow.
- So I made and appointment with the radiation oncologist today and told him all this (This is Dr. Hope #2). He has a call in to the neurosurgeon’s office and will get back to me tomorrow. He thinks we should just do a scan since I’m not having symptoms, and he thinks we shouldn’t do it until December rather than next week. However, he agrees that we need to talk with the neurosurgeon to see exactly why he is so anxious to do this now — just in case.
- Meanwhile, the cyberknife people are doing their busywork and it looks like they want to start treating my back on Monday the 15th. This is the only cyberknife in the Seattle area and you just have to queue up with everyone else. They are, however, putting me on a fast track. They are very nice.
- I can’t lie on my back for more than two seconds without excruciating pain. How am I supposed to lie on my back for two days after getting a hole drilled in my head? Stupid stupid stupid stupid doctor. STUPID! But still, I don’t want to be medically stupid myself.
- If I have brain surgery on Thursday I might not be physcially well enough to have cyberknife on my back starting Monday. I can feel the nerves being damaged in my back progressively. So, my choices are skipping something that might be medically necessary for my brain or skipping something that might be medically necessary for my back.
- Sorry. Roid rage.
- I talked with the naturopath today who is requesting the neurosurgeon’s notes and will call me tomorrow if she can get them and parse something out of them that might be useful.
- Meanwhile, I just need prayer for wisdom in figuring out what to do first, next, or whatever.
- I’m inclined to ask the neurosurgeon why, other than he happens to be available on Thursday, we need to do this NOW???? Stupid stupid stupid doctor. (He’s extremely competent and I actually like him when I don’t feel like kicking him in the shins.)
- I might end up in rehab to get function of my left leg back all the way. The real puzzle here is that the brain thing is in a place that can cause left-side motor problems, but I’m getting nerve “zinging” down my back when I move in certain ways and it goes from that part of my spine and then downward, so it seems like a spine/nerve problem to me rather than a brain problem at the moment.
- Nobody say anything like “It’s going to be okay,” “I’m sure you’ll get through this just fine,” or anything like that. We’re getting down to little things that can kill me at a moment’s notice — stroke, whatever. I’m in a pretty darn bad place and don’t relish anything that trivializes the current crisis.
- And I know you’re all a lot more thoughtful than that. Steroids make me crazy. Did you notice?
- What we really need is just a huge bath of wisdom and prayer about next steps. It’s time to share this now because tomorrow is Wednesday and I’m scheduled to get my head drilled on Thursday. I need to hear from doctors and I need to hear from them early and I have absolutely no patience left.