Jan 15, 2013

5th Germany Update

Just woke from a bad nightmare. I have such vivid dreams. Yesterday, when I arrived at my appointment, the nurse took one look at me and called Dr Germany. I tried to explain that I looked awful because I was reading a sad book (true story) and it made me cry (also true), but she wasn't having it and postponed my immunotherapy for later this morning.

I'm feeling much better after having a break. Now I just have the immunotherapy this morning at 9:30 am, then tomorrow I have the immunotherapy primed with my dendritic cells. Then I'm done. Until my reoccurring New York appointments, that is. I had more hyperthermia appointments scheduled, but I'm canceling them, obviously that treatment does not work well with my body. I had been so excited, but oh well.

Here's a photo of green and I last night when we wondered off for her birthday dinner. We were literally laughed at in our bright coral and yellow coats (by our bell boy) because 99.9% of Duderstadters wear black, brown, or gray coats - either puffy or real fur trench coats. Apparently we did not get the memo.

Jan 14, 2013

Fourth Germany Update

So ever since my first hyperthermia on Friday, I've been experiencing an ongoing headache. I thought that maybe it was an effect of the immunotherapy shot. When we checked into the appointment yesterday for my next hyperthermia, I mentioned the headaches. The nurse gave a concerned look and called Dr Germany. One of the side effects of hyperthermia can be edema (swelling) and it looks like that's what I'm dealing with. They canceled my hyperthermia, but still gave me my immunotherapy shot. I've been feeling pretty off so Green walked me back to the hotel and we put me back to bed.

My body is exceedingly exhausted from all the travel, and all of the procedures. My sleep patterns are all messed up - in fact it's three in the morning. When I finish this post I will take two Advil PMs and see if I can knock myself out.

The headaches have been very bad, but I didn't really want to write about them and complain. I should be honest though so that people who may want to try these treatments can have my account and have all the information.

I have also been taking high doses of boswellic acid that Dr Germany prescribed. It's an anti-inflammatory. It's much more concentrated than I can get in the states. I stopped taking those pills yesterday afternoon as well. I'm trying to pinpoint exactly what's making me feel so sick. I keep having to remind myself that it hasn't even been three months since my brain surgery. I need to be careful and listen to my body. My body feels dangerously close to having a seizure, a feeling that has hovered lately in my cells. I feel bad for Green because I spend most of the days in bed. I've missed dinner at least three days because I was unwell, and sleeping. I'm really grateful that she's comfortable eating alone.

Ok. Time for me to pop some pills and try and get more sleep. Below is the bed that you do hyperthermia do, it's a waterbed, and that half bubble thing goes on your head. I was all ready to go yesterday. Oh well.