Never Doing That Again!

Gamma Knife Radiation treatment didn't go well yesterday, in fact it ranks up there with one of the most painful experiences of my life. My mastectomy is number one, eye surgery is number 2, GNR ties for number 3 since I've had it twice and both times were agonizing.

The day before the treatment I met with a nurse to go over things and both my husband and I mentioned several times that the pain of the first treatment was extreme and asked what could be done. We went over my allergies (I have a lot of allergies to pain meds in particular), and she said she'd mention in to my doctor. The day of, the pain concern was brought up again a few times but with little result. I hate being a problem patient. I hate being the patient that nurses and doctors roll their eyes at. So I tend to keep quiet when things aren't going well. My husband does his best to speak up for me, but even that isn't enough some times. My husband talked to my surgeon the minute he walked into the room and he immediately prescribed some IV drugs so I wouldn't feel discomfort when they attached the metal gear to my head (held in place with 4 screws directly into my skull). I needed a little more Novocaine on one of the screws on my forehead, but my doc was quick to give it to me. The process of gamma knife radiation can take several hours and by the time I was wrapping up the meds were wearing off. I mentioned it to the nurse and she kinda shrugged me off.

Then they took out the screws and that's when it all went to hell.

The pain was instantaneous and overwhelming. I couldn't stop crying and then started hyperventilating. The nurse acted like I was just a big cry baby, but my husband and the student nurse who had been observing the whole thing were both trying to get me to calm down and asking what could be done. My doc came in and saw my state and immediately prescribed something for me to take when I got home, but what I couldn't understand was why no one was doing anything for me RIGHT THEN. My surgeon got called away and the nurse just handed me my clothes and told me to change. I couldn't get dressed without assistance because of the pain and I was cursing in frustration. We finally started to leave but the student nurse stopped us and said one of the other nurses was going to the pharmacy to get me something. So we went back to the room to wait and MY nurse came in and was surprised we were still there. We waited 10 minutes and finally the other nurse came in with the meds. My husband asked why this was happening to me and why they weren't prepared for it. She explained that some people feel nothing and some people feel extreme pain, but both extremes aren't terribly common. They do have medications on hand to give to people, but I was allergic to them so they literally had nothing to help me. She admitted that she'd been trying to have more medications available for situations like this, but hadn't made any progress.

So yesterday was agony, today is pain, hopefully tomorrow will be better. When I see my radiation oncologist in 3 months for a follow-up MRI I'm going to tell her what I experienced was unacceptable and I'm never doing it again. Another hospital in my area does a different type of radiation, Cyber Knife, that doesn't involve screws in the head and my rad onc works both places. The only problem is my surgeon doesn't work at the other hospital so I'll have to have another neurosurgeon, and that makes me sad because it's hard to find a surgeon with a good bedside manner.

Impossible Decision

I have a tiny tumor on my left frontal lobe; somewhere above and behind my left eye. So once again cancer is having a grand time finding places in my brain to settle down and raise a family. I'm getting it gamma knifed next week. Then what?

Spot Treatment (current plan)
Keep taking Herceptin 'cause it works from the neck down. Keep getting MRIs every couple of months. Hope for the best expect the worst. When tumors show in my brain, zap 'em with radiation. REPEAT. If the tumors in the brain start to get out of control, then whole-brain radiation.

The Alternative
Lapatinib aka Tykerb. Herceptin's cousin. Oral medication so no more monthly treatments. Very expensive. If it works at all, it may offer some protection for my brain.

What to do?
I have no idea. I'm afraid of what constant zapping will do to my brain. I don't want to go through this over and over and over until the end of my days. So part of me wants to try Lapatinib . The other part of me is scared shitless of going off of Herceptin. It's working, sort of. Is "sort of" the best I can expect? Is "sort of" better than the "maybe" that I'll get by switching to Lapatinib? If I go on Lapatinib and it doesn't work there is nothing else. All I can do is go back to Herceptin and hope it works again, but since that is never presented as an option I can only assume going back isn't ideal.

I don't know how to make this decision and I feel very alone and helpless. Half the time I want to sleep and never wake up. Half the time I can't sleep for the constant worry in my head.