Friday, May 06, 2011

The "Beasts" are on a rampage again!

Where do I start? Hmmn....Well first of all, don't be concerned about my lack of posts this year. That really doesn't mean anything. Truthfully I have been too busy "living the life". After the holidays what transpired were a few foundation events with very small and short speaking engagements but none the less required me to think about and prepare for, snowshoe season, 4 trips to Oregon, a visit to the NIH in February, a major involvement with recruiting and leading my largest team (32) in the Leukemia and Lymphoma Society Big Climb March charity event successfully exceeding our fundraising goal, running 2-3 times a week, my regular weekly session with my trainer at the gym along with my consistent strength training 3 days a week, early commencement of hike season (just finished my 8th hike for the year Wednesday), LOTS of connecting with patients around the world, exercising the dogs regularly, and pondering a major medical decision all the while trying to keep up with my normal duties as a wife. Oh yeah, there was a last day of interviews for the upcoming movie too. I keep pretty busy so all that living either left no time to blog or just plain tapped me out! ;-) So sorry for my absence.

Upon my 4th visit to the National Institutes of Health where I am a participant in a natural history study of NF2, we recieved the completely unexpected news that I have had a tumor regrowth of the mass operated on in Oct 2009 - only a year and a half prior! I could not believe it! Harley and I went around battles where I could not accept the situation as concerning as it is. In fact, I pushed it off mostly for a month directing my focus on the Big Climb preparation. My surgeons both on the east coast and west coast concurred that they wanted me to get surgery soon. My inclination was to not schedule until the fall (hehe AGAIN) but neither doctor felt it would be a good idea to wait that long.

The consensus is that I am fit and healthy which makes me a great candidate. The doctors want me to have the surgery while I am strong and before I become sick to offer the best chance of a promising recovery. However, when you feel on top of the world it is very difficult to agree to putting your body through intense trauma and pain which carries significant risks. It is just plain tough and although I made a decision in March, since then I have been playing the conversation back and forth in my mind of convincing myself why I do or do not need surgery. There have been days where I wonder if this is the last time I will be able to traverse a particular hike in the mountains, freely walk again with my hands in my pockets, drive from point A to point B, trample along a narly riverbed shore, or a slew of things. I have often questioned myself in the preceeding weeks if I am making the right decision. Even though I am in the shape of my life and most likely in the club of the fittest patients, some things in life are just beyond our control and out of our hands. The possibility that some fluke thing may happen always exists and in regards to that I wonder if I should have waited just to carry out the fantasy a little longer.

In the most difficult of days trying to connect and find a way to describe the experience, I relate the situation of when to schedule surgery to being on a sputtering plane flying over the wide open ocean. The plane for whatever reason is running low on fuel and you do not know if there is enough to get you to a continental mass safely where you can land. Hence, your options are to sit on the plane hoping to find land when it is likely to crash into the ocean or you can jump out of the plane with a parachute. If you have never jumped out of a plane before and you are terrified of heights, your anxiety will be running wild! But if you are in a situation such as I where you have been there before, let's just say that it did not conquer your fear of heights and that your prior experience inflicted pain. Maybe you broke an arm or leg. Therefore, you would be in no hurry to feel that way again. So instead of jumping out immediately, you sit there and debate with yourself about it. Meanwhile you hope that somehow the plane will magically find land as you are thinking so you do not have to jump out afterall.

So I made the decision to jump. Before the whole plane dilemna I had been engrossed in a really good book. Now that it is time to jump, I hope I am able to find the book again. The book is my quality of life. Surgery always carries risk that you might not be able to return to the same quality of life afterward. That is the scary part. I suppose it would be like jumping through a worm hole. It is likely that you will be just fine BUT there is always a chance that an oddity might happen and your particles are scattered out into the universe or your body does not rematerialize correctly leaving an arm hanging out of your abdomen.

On a better note, the finality of my cancer treatment and commencement of my remission anniversary is this month! I am incredibly grateful for my life and the additional 18 years I have been granted. They have been a thrilling adventure and I have to say that I am really quite blessed. It has been such a joy to do things again which were hindered after the radiosurgery but returned or improved after the first surgery. It is so interesting how deeply you appreciate something after it has been compromised or was lost.

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