I hit a bad wall today. I was set up to meet with Dr. Williams, the neurosurgeon whom I have liked from long ago (the past 2 years). But it was hard to keep it together. Surgeons have different goals and different statistics to look at and I cannot begrudge this. But then, how much of the post surgery do they truly see? I think Williams is probably one of the kindest fellows in his industry. Yet for me…too much negative, not enough hope. And it just pushed me too low.
Statistically, Williams put me past the mark where I should have been. Sigh. Now I am…average.
Years ago people died fast with brain tumors. And yes, it is still in that era. And I am crying more now that I had the first year. I am scared. I am resentful. For the first time, for the last few months there have been pieces of crap sitting around my brain. And I am mad. I am sad. Then I will be mad. The feelings shift.
Now, I am in a chance to shift. Now is the chance to put the kids in school and look to see what other things I can try out there. I have a lot of reading to do. I have chances to see the latest and experimental things we can try. When I got the treatments the first time around, it was treating an empty brain. Now there is material and I am mad. I’ll be sad in a few moments, I am sure. But when I am mad, I am mad.
For now, I am hoping that I will be able to stay on the current path of Avastin and Irinotecan. But it is time to get the next steps looked into, slowly, but yes. I had shoved things aside for the time it was appropriate. Alas, it is time to balance both things. The positive survives and the traditional end.
I will get most of it out here on the death part…my view (not those who are left). I believe in a higher power. I believe that I get to harass people later in life. I believe that I have a cousin Jim who showed me the way long ago (still not the beer man he is, but we can argue about that later). I believe that the family I was so fortunate to be a part of since 1971 will always be part of my existence. I believe I get to spend time with those who went before. Jim was an incredible cook. I believe I will listen as he teaches me with everyone around.
I guess the best thing to say is that I am of fortune. I believe in today. I believe in the dragon-fly that Jim sends around. And I believe that today I get to fight it.
What I need to work on more is laying out the future in both directions. Steve can see both futures ahead and it must be one of the most difficult plans to see. Growing up, he did not have what I did. I am so glad that he knows what he has. He knows the families and friends that will be there for him. Knowing is not the same as feeling. In the mean time, he has to juggle work, being worried about me, the boys, his folks, the list goes on and on. I do believe that the next era will be the hardest. He does not read this site too much. And I think that is good, at the end of the day. He is always fine with what I write, but the silent support is what he needs. He gets worried now when I am not loud. That makes him worry.
Please forgive this one. I just wanted to get out the emotion today. Now. I want to be able to go into war mode and not victim mode. This page lets me vent to the page and free the love of my life.
The next few days tell us what one point of medicine has. As that calms, I have to approach a different approaches are there. We have to do the practical plan, then push in a different world.
Tagged: Planning for the Worst