I forgot to mention the additional news from my neuro-oncologist. She decided I was ready to not come back for 8 months!! I know this is good news, as she feels that I do not need to be monitored as closely, but it is scaring the crap out of me! Waiting six months between MRIs was difficult, I can only imagine eight months will be much worse. I know I will have a difficult time deciding when to call her with a concern and when to wait it out. New issues are consistently popping up and so far it has not signaled tumor growth, but how am I supposed to know when it does. I have not received any explanations on why new things come up. I am only told that it could be my seizure medication, seizures, or surgery side effects. That does not help me distinguish when to be concerned. Two weeks ago my neurologist also decided I can go longer intervals without seeing her (from 3 months to 4 months). I did not mind that as much because she primarily does my seizure medication changes, which can be done over the phone. When I have an increase in seizures between appointments she always calls me right back and discusses everything with me. It is just so much uncertainty at once. My NO feels since in the past I was aware of the brain tumor symptoms before it showed up on the MRI there is no harm in a longer gap between MRIs. I still felt much solace in knowing an MRI was coming up soon if I had any problems. I also try to remind myself that since this is a slow growing tumor there has never been a rush to have surgery. But I cannot calm my nerves with facts.
This reminds of my pre-brain tumor health problems. On my 21st birthday I was diagnosed with a rare degenerative eye disease when I woke up missing the central vision in my left eye. After months of failed treatment I went for visits and follow up angiograms. I had many false alarms when I thought my vision deteriorated, but luckily no further damage has been done. I have been getting follow up appointments every 6 months, with testing done once a year. Over time my fears of a flare up have calmed and I no longer fear going blind every day. When did this fear subside? How did it happen? I will never know. I used to consider my eye disease the sword of damocles and could never imagine not worrying about going blind. Yet I feel this situation is different. I cannot imagine not thinking about the time bomb in my head. With my eye disease it is known that the longer one goes without a flare up the chances of having another one decreases. It is not the same with my brain tumor that took at least 12 years to grow. It is funny that just one month ago my retina specialist decided I only needed to see him annually. I was fearful for a few minutes, but quickly got over it. I know it will be obvious if I have a flare up, as I woke up completely blind the first time it happened. There is no way of mistaking that from anything else. It is not the same as having an increase in seizures or a bad memory day, which can be from brain tumor growth, fatigue or stress. It is funny how going blind in one eye seems like a small fear compared to what I have been dealing with the past 2.5 years. I know I should be relieved that I will have less doctor appointments to go to, but it only adds to my stress between appointments.
1 comment:
I feel you.
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