This morning, I was so tired, I didn’t get up to see the girls off to school. I know one of the side effects with the radiation is fatigue but I’m surprised since it’s only been one day. There must be a lot more to it like the dizziness, lack of hearing, the change in diet – has really made me tired! Even after going to my second session, I was really tired where I took a long nap! I’ve been taking more naps recently but now I feel like I have no energy or drive to do anything but rest! Even if I try to do something, I’m so dizzy that I feel very unstable and end up not doing it to be safe! After having those vomitting episodes yesterday, I decided to just try to eat healthy for a while and not take the supplements that make me gag! I find myself hungry but not wanting to eat since it triggers more gagging! I started drinking some Pelligrino and fresh squeezed OJ with it and it seemed to calm my stomach a little (I think the bubbles help a lot!) But hopefully it will get better soon -I can’t wait till everything gets better!
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The nausea is still prominent so she had to stop that Detox diet thing this morning. The shakes and other foods were just too difficult to keep down. She makes this hacking vomit noise that is just about the most awful thing I’ve ever heard.
Even so, Satomi seemed to have a better day today. She slept a lot and she didn’t seem to suffer much. Her activity was limited to travel to-and-from her 5-minute radiation session and a few trips downstairs to eat. The session itself was uneventful.
But that’s from my persepective. I just gave her a short note: “Today was a better day?” In a loud voice she said “No-the same as before”. That’s sad but not surprising. She may not show it but she’s still suffering.
I confirmed with our Oncologist that delaying the Portacath procedure would not be an issue. With the upcoming Holidays, it couldn’t happen until January. It goes against my expeditious nature but I think the extra time would be easier on Satomi with no downside beyond our annual insurance deductible.
Today was a long day for our Satomi. It was only a couple of months ago that a day like this would have been easy: A CT scan at 10:00am followed by a short walk downstairs for her first Radiation Treatment at about 10:45am. Out of that office by 11:00am. A 10 minute drive to see her surgeon to fill out papers. The surgeon’s office is in the new St. Joseph’s Cancer center; Beautiful building but the handicapped spaces are still about a hundred yards away. Satomi made the trek both ways with her walker as usual. We weren’t going to see the surgeon at all at first but since we hadn’t seen her for nearly 2-years, a quick exam was warranted. We didn’t have an appointment but she fit us in after a 20 minute wait. I had Satomi home by 1:00pm.
There were signs that things were getting bad for her. We don’t really have a routine for filling out her medical forms. Sometimes I do it, sometimes she does it. At the surgeon today I opted for her to do it because I can’t ask her questions. Her hearing is completely gone now. After she filled out the surgeon’s medical forms, I checked them over and was shocked to see that they were almost unreadable. There were many instances that she repeatedly changed her mind to Yes/No questions that we’ve answered a million times over these past years. A lot of scratching things out.
I was relieved to get her home. She was safe and done for the day so I went to the office. She texted me several times. Her Mom arrived sometime in the afternoon just in time for things to get worse. Her dizziness and nausea was so bad that she couldn’t keep down her food anymore.
When I got home, she was in bed with a wet towel on her forehead trying to sleep. The vomiting also screwed up her medication. We figured that most was expelled but didn’t want to risk mixing drugs so she ended up taking Tylenol instead of her normal Darvocet. She ended up falling asleep so things eventually calmed down. I hate seeing her suffer like that.
In retrospect, I am considering delaying the surgery until after the Radiation therapy is over. We really need to limit her activities to one or maybe two a day. I think I’ll start pushing her in a wheelchair to save her strength. I’m always reluctant to do things that look like she’s getting worse.
The Radiation therapy started this morning. It’s a very quick procedure so it’s hard to grasp that anything is being done at all. It took longer to get her on the table. Here are a few photos:
The technology is similar to the Cyberknife in that it uses a Linear Accelerator as a radiation source instead of some chunk of glowing metal. The main difference is that the radiation beam isn’t focused. In the big rotating head, there’s actually an adjustable metal shield that is configured to cover her face and but expose her brain.
Look at the projected light in this next photo. Notice how there is a distinct shadow over Satomi’s face but the rest of her head is brightly lighted.
The light is an aiming device used to verify that the shield has been correctly configured. Interesting.
This morning, I went in for my first whole brain radiation treatment. I first had to lie flat on my back so they can simulate how the radiation will work with the mesh mask similar to the one I used for Cyberknife so that they know which areas to concentrate on. Then after about 15-20 minutes of the simulation, I had to go down to the basement where the actual radiation machine is (when I had radiation for my right breast a couple years ago, it was the same place and the staff remembered me) and again on my back with the mask on, this time actually getting the radiation to my brain which took about 5-10 minutes! After getting up, I was dizzier which made me have a bad headache! After that, we went to my surgeon’s office for pre-op/paperwork for the placement of the port. I still can’t hear anything and reading lips has become harder now that I have double vision centrally as well as peripherally. So I have to have people who talk to me write it down on paper or dry-erase board at least I can respond by talking!
I came home and had some lunch, then went up to my room to rest and after a couple hours, I got really dizzy and nauseous that I threw up 3 times! I also got a really bad headache! I tried to eat dinner but made me feel more nauseous! I tried to rest but hard to do feeling nauseous with a headache!
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