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Health Rollercoaster
Jun. 3rd, 2017 10:28 amI've been doing better at keeping up with my life here than I remembered. I was going to recap the Coachella Valley and Corflu trips, but I see I don't have to. Now I'm back from Micronesia, which I'll be writing about at greater length later. Short version is that it was an epic trip, both geographically and emotionally. However, one of the unpleasant occurrences out there, fortunately toward the end of the trip was that I had two seizures, the second of which I was able to nip in the bud with a drug called Lorazepam. I'll write more about this experience in my fuller trip report. My instant assumption was that the seizures were an indicator that the cancer had continued to spread and was interfering with normal neurological function.
Yesterday was the day of reckoning, as I got my first MRI since the one with the bad news in April or late March or whenever it was. My sister was here, having driven me up from Portland, where the Micronesian trip originated and ended. The MRI was not the only medical item on yesterday's agenda. First off were lab tests for the Avastin infusion scheduled for later in the day. Then the MRI. Then a visit with Dr Shetabi, who is a medical oncologist helping my neuro-oncologist, Dr Taylor, until she can hire more specialists. Dr Shetabi is a kindly old gent who has retired from his practice at Virginia Mason, but is temporarily helping out at the Alvord Brain Tumor Center. He wanted to know how my Micronesian trip had gone and seemed genuinely pleased that it had mostly gone very well. We talked about how I was feeling (exhausted) and about the seizures.
To my surprise, he didn't seem to care much about the seizures, other than to tell me to up the dosage of the daily anti-seizure drug I take. Then he let the cat out of the bag: the MRI showed that the cancer had been diminished since the previous MRI. That was completely the opposite of the news I was expecting, so it was kind of hard to digest. Shetabi advised us to savor the news and not get carried away by it. Time will tell whether the cancer is truly being beaten back, or whether it's just taking a breather. Still, it was hard not to feel like I'd gotten a reprieve. Shetabi thought it was the Avastin that had done the job, although I'm not sure why he thought it was that rather than the microdoses of chemo that I took daily during the trip, not to mention the emotional/spiritual boost of the trip itself. He didn't care to speculate about the cause of the seizures, but said it could have been any number of things (the long trip, the heat and humidity, etc) or combination of things.
In any event, I'm feeling a little whiplash, but I can't say it hurts. Going forward I'll continue with the biweekly Avastin infusions, and I'll get back on the Optune and on the old schedule of five days of 300 mgs of Temodar every 28 days. We'll see where I'm at at the end of the year, but Shetabi was hopeful that we'd be able to beat the cancer back enough for me to finally take a break from treatment. Other than having to get back on chemo, this was all welcome news. Dr Taylor had said we might try another form of chemo, and she'd even hinted we might try another form of radiation, like the cyberknife. Fortunately, the diminishment of the cancer in the meantime apparently pushed them in another direction, and I'm fine with that.
Despite the advice to take the news cautiously, I'll be celebrating this for a few days at least. I'm now taking a break from the Temodar until the heavier doses start next Wednesday or so.
Yesterday was the day of reckoning, as I got my first MRI since the one with the bad news in April or late March or whenever it was. My sister was here, having driven me up from Portland, where the Micronesian trip originated and ended. The MRI was not the only medical item on yesterday's agenda. First off were lab tests for the Avastin infusion scheduled for later in the day. Then the MRI. Then a visit with Dr Shetabi, who is a medical oncologist helping my neuro-oncologist, Dr Taylor, until she can hire more specialists. Dr Shetabi is a kindly old gent who has retired from his practice at Virginia Mason, but is temporarily helping out at the Alvord Brain Tumor Center. He wanted to know how my Micronesian trip had gone and seemed genuinely pleased that it had mostly gone very well. We talked about how I was feeling (exhausted) and about the seizures.
To my surprise, he didn't seem to care much about the seizures, other than to tell me to up the dosage of the daily anti-seizure drug I take. Then he let the cat out of the bag: the MRI showed that the cancer had been diminished since the previous MRI. That was completely the opposite of the news I was expecting, so it was kind of hard to digest. Shetabi advised us to savor the news and not get carried away by it. Time will tell whether the cancer is truly being beaten back, or whether it's just taking a breather. Still, it was hard not to feel like I'd gotten a reprieve. Shetabi thought it was the Avastin that had done the job, although I'm not sure why he thought it was that rather than the microdoses of chemo that I took daily during the trip, not to mention the emotional/spiritual boost of the trip itself. He didn't care to speculate about the cause of the seizures, but said it could have been any number of things (the long trip, the heat and humidity, etc) or combination of things.
In any event, I'm feeling a little whiplash, but I can't say it hurts. Going forward I'll continue with the biweekly Avastin infusions, and I'll get back on the Optune and on the old schedule of five days of 300 mgs of Temodar every 28 days. We'll see where I'm at at the end of the year, but Shetabi was hopeful that we'd be able to beat the cancer back enough for me to finally take a break from treatment. Other than having to get back on chemo, this was all welcome news. Dr Taylor had said we might try another form of chemo, and she'd even hinted we might try another form of radiation, like the cyberknife. Fortunately, the diminishment of the cancer in the meantime apparently pushed them in another direction, and I'm fine with that.
Despite the advice to take the news cautiously, I'll be celebrating this for a few days at least. I'm now taking a break from the Temodar until the heavier doses start next Wednesday or so.
