I'm going to step forward for a second, by means of going back.
While I want to talk about the chronicling or my life and our life, I want to talk about MRIs. I've had an amazing amount of scans since I was diagnosed. The original scan, a CT scan (1) that shook me. Three MRIs (2, 3, 4) at USC University. The pre-op scan (5) at Cedars, a night before the surgery, when they put the Life Savers all around my face, as a means to marking where they'd cut in my head open.
The post-op results (6), as a total resection of a grapefruit-sized tumor, a good sign. Clearly.
Two months later, I had the follow-up MRIs (7), which as a low point. Not only wasn't able to do Immunotherapy (after going through an hour and a half of immuno prep), we weren't able to use our regular neuro-oncologist (Dr. Jeremy Rudnick) for the results of the scan. Instead, we met with Dr. Phuphanich, who is the director or the neuro-oncology department. Ok, right? I mean, we really like Rudnick ... as a catastrophic result presents to us, Rudnick is exactly the doctor you want to deal with. From what I've been told, oncologists are supposed to be human first, to translate all the shit you're dealing with as it happens. So, if Rudnick is supposed to be good, then the director should be equally as good, if not better, right?
Not so much. Rudnick is very good at it. Phuphanich is, well, the opposite. It was an awful experience, and Dana and I told Rudnick that we will never use Phuphanich again.
The end result was that we couldn't to Immunotherapy, I was put back on Dekadron (steroids) because there was still swelling around my brain, and everyone felt like we had been emotionally raped.
Next MRI (8) was March, which resulted in another piece of stellar news. Not only the fact that the swelling is still pervasive, now we have to deal with a separate part of tumor or a lesion was cropping up. At first, Dr. Yu wanted to do Gamma Knife, a one-off procedure, an intense dose of radioation.
Instead, we decided to use IMRT (9), a focused beam of radiation that's more "pleasant" than Gamma. Honestly, I don't know the difference between IMRT and regular radiation, outside the fact that is 8 minutes a session as opposed to 3 to 5 minutes, and that IMRT only takes 5 days. The original sessions lasted 6 weeks.
The next MRI as on April 25 (10). Fool's gold. I remember that Dana and I went to 3rd Street and got "celebratory" dinner because we were rewarded with a passing grade, so to say. All that means that we had put the cancer at bay for a while. Rudnick told us that we had 2 months off.
We were damned determined to enjoy that time, too, even know that everything could change with the next MRI.
Which was the next one (11), as it were. Personally, I felt less than stellar. I had been trying to as hell to get off Dekadron, to no avail. I had two car accidents sandwiched between someone broke into my car, all in the span of 6 days. Because I had was off steroids, I was having significant problems speaking, and after the third incident, I put myself on Dekadron again, three mg/day. Not a extensive amount, but it still felt like a failure to me.
So, when I got the results for this MRI, it wasn't really a surprise that I was slipping. Since the first time we met Rudnick, told us that he would take aggressive action when it was needed.
Well, that was time now, which meant Avastin. Rudnick and Nassir would tell us that Avastin would replace Dekadron, as it would act as a super steroid. Which it did that. For the first time in months, I felt clear. I tapered off the steroids, and now I was dealing with a familiar sensation: headache pain. Intense headache pain. Plus, the scar was leaking pus, as well. When it got too painful, we met with Nassir Sunday night.
Next MRI! (12) We were scheduled to see Rudnick at September 12, but that wasn't soon enough, as we were admitted to Cedars again. Had another surgery, and the result was that a big chunk bone was taken out. After the surgery, I had a pikkline put in. Great. Everything looked like shit and my head was leaking constantly. Yu put three additional stitches in, with no anesthesia, and still leaking.
Finally, Yu hooked up with a plastic surgeon named Dr. Aronowitz. I would still have a dent in my head, but it would look so much normal. After a couple of weeks later, no leakage, and I was able to take the pikkline out.
I haven't taken Avastin in three months and change. I haven't taken steroids. And while I'm getting pre-MRI anxiety, it's not as bad as it was before.
lee
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