Monday, September 21, 2009

Tis Time!

Exactly one month from today is my brain surgery. For many years the thought absolutely terrified me. Before my first open brain surgery in 2007, I was extremely anxious the entire summer and suffered agonizing turmoil. I felt the dread of when you know there is that big final exam coming up you are unsure about and carries so much weight that your performance could be the difference between passing/failing or an entire letter grade. Further, my stomach churned the way a person experiences jumping out of a plane for the first time with a fear of heights.

I do not feel any of those things now. In fact, for the most part, I have let it go all summer and thoroughly enjoyed the disconnection. It was as if I took a vacation from the reality of having surgery. I knew it was coming, but I put it off.

Since spring, I struggled to get my head "in the game". At my last check up where I will have surgery, the half marathon was in a week so my focus was on that. I could not entirely wrap my brain around a surgery and said that I could not make any surgery decisions at that time.

When I finally did think about it and decide that the last week of August would be a good time, I learned of the NF2 study at the NIH and applied. So we delayed the surgery keeping a September date in mind. I never committed to a date because secretly I hoped at the NIH they would find me some kind of miraculous wonder that did not need the surgery afterall.

At my NIH visit, I still had a hard time getting into "medical mode" as we just returned from a fantasy dive vacation. I was still exhilirated from the whole experience and exhausted by the 3 hour time change, getting up very early every day (3 in the morning Pacific time), the 30 dives we completed in 10 days, and jet lag from traveling from Mexico to Seattle and then Seattle to Maryland. Further, we came down with food poisoning in Maryland and I, a delayed allergic reaction to accidental contact with coral. Because of the illness/coral contact reaction, there was a scare that I may have swine flu on the important appointment day. Therefore, my appointment where I would ask questions about the tumors/my situation was severely delayed while infectious disease investigated everything I had done, where I had been, and how I was feeling. When I finally had my real appointment, it was condensed into a half hour and rushed so that we could try to catch our plane in DC.

Now the reality has sunk in and a solid date set. At this point, I really feel I need this surgery. I held out for many years while it continued to grow waiting for alternative solutions to present themselves. I am out of time. I tried the radiosurgery in 2004 for the larger tumor on the opposite side of the brainstem. It did not work out as I had hoped and caused many unexpected problems that only occur in a tiny minority. I tried the propolis and its effectiveness cannot be determined at this time and it merely is intended to stop tumor growth and not shrink them. As far as clinical trials available, the tumor is at a size and critical location where I just cannot play around with the time it would take for a response to the drugs.

So here I am. I am out of options. The issue is that we again need to relieve the pressure being exerted on the brainstem. My brainstem is nearly horizontal now where it was being nearly pinched off by the tumors on either side in 2007. What happened is that a tumor I did not expect to grow grew and merged with the larger tumor forming one big tumor.

Ok back to "tis time". Last week we unexpectedly lost a young man is his 20s with NF2. He did in his sleep. Another guy responded that the same thing happened to his sister. She was in her 30s and had a brain aneurysm in her sleep. It was concluded that too much pressure built up in her brain.

After learning that, I am anxious to get the dang thing out of my head and hoping I will hold until the surgery in October. I have been having lots of headaches and intermittent spotting of numbness on my lips. I also feel dizzy and nauseous sometimes and some days the double vision is extremely distracting. I was running out of the medication I take for my nystagmus (eye problem) so I sort of stopped taking it to reserve it for any hiking days left or days I need balance. It seems I have become dependent on it as symptoms returned and I got sick from what was probably a drug withdrawal. Therefore I am back on it again and will taper off before surgery. I am really hoping that once we get the pressure out of my head, things will improve.

So the count down is on! Today is the last day of summer and marks 1 month to the day of my surgery. I have begun over the past couple of weeks to work on some major projects in the hope that I will finish before surgery. I will be making 3 trips to Oregon before the surgery (Pre-op appointment is this Thursday in Portland). That leaves me with only 19 working days. Between today and tomorrow (my birthday), I hope to accomplish my interior painting project on the main floor of the house.

I feel ready but nervous. I am nervous about having enough time to finish everything by the surgery date. I am trying to knock out tasks and cleaning so I can come home and relax during recovery in a nice environment. I do not want to have the worry of things left to do hanging over my head and causing any stress. I relate the nervousness to planning for a wedding in the final month. Time flies by quickly and you hope that there are enough days to get everything done so that things will go smoothly without a hitch.

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