13 May 2006
Saturday, Midnight
High-Level Journal Summary: Affirmation that I am not mad about having brain cancer. Honestly. When I saw the movie called "Water" this evening, I saw Indian widows who were considered "worthless" without a husband and were forced to beg and become prostitutes. That is the sort of preventable issue that makes me mad.
Unpreventable brain cancer does not light my fuse, whereas identifiable, preventable bad issues do. It actually makes me feel a bit guilty that so much energy is being exerted to help me with my brain cancer when there are tens of millions of people who need help in other areas of this world.
Although a tall order, the ideal would be to have solutions to all these things someday. Idealistic? Yes. Wrong? No.
Countdowns:
1.) Day 27 of 28 in my 7th 5/23 Temodar chemotherapy cycle.
2.) Quarterly meeting with my local neurologist, Dr. Amy Stone, is on 5/16/06. The purpose of this meeting is to keep in sync with her and my primary neurologist, Dr. Steven Pacia (NYU).
Seizure Activity:
1.) Last Grand Mal Seizure was on 6/30/05.
2.) Last Simple Partial Seizure, or SPS, was 4 days ago (10-second sharp seizure).
3.) I have now had 19 SPS's in the past 142 days. This is an average of 1 every 7.4 days.
Medical Goals:
1.) For brain cancer, take Temodar chemotherapy for 2 years. This will improve the chances of stabilizing my brain cancer to keep it slow-growing. This will also "buy me time" as new treatments are found.
2.) For partial epilepsy, get better seizure control. Medication, stress reduction, and healthy sleep patterns are all needed. I cannot change medications while on chemotherapy. Still, the ultimate goal is to eliminate seizure activity.
3.) Game Plan. Treating my chemotherapy treatment as my fulltime job continues to be my overall game plan. This allows me the time and energy to employ the best practices I have learned from my virtual medical team.
Actual Journal: I get a question fairly often. "Are you mad that you have brain cancer?" I can certainly understand this question, and I can especially understand that my parents are mad that I have brain cancer. We talk about this, and they accept but do not like the answer I give.
However it comes across, I am not mad about having brain cancer. I even go further. I have come to embrace this experience. But how do I know that I am not mad? Simply by comparison. I still know what it feels like to get very mad.
Getting mad
I celebrated Mother's Day with my Mom this evening. Sort of a Mother's Day Eve more than anything else. I wanted to avoid the Sunday Brunch madness and do something a bit more creative. After a dinner at Oyamel in Crystal City, we went to see the movie "Water," which opened today in Shirlington, VA.
"Water" is a film about Indian widows in the 1930's. In the past and present, many women whose husbands have died are forced to enter "widow houses." Labeled as worthless without a husband to measure themselves by, they struggle to survive by begging and often turn to prostitution. It happened in the '30s and is still happening today.
- Part of a film review by JASMINE YUEN-CARRUCAN
The trailer at the end of this movie indicated that according to a 2001 Census, there are about 34,000,000 Indian widows still exposed to this treatment as widows.
Now THAT is something that just lights my fuse. This is an example of something that makes me mad. Did I have any reaction even slightly similar to this when I was told that I have brain cancer on 12/6/04? No. I've said it before and I'll say it again, my heart has never taken an extra beat in life because I have brain cancer. No right or wrong in that...just my particular experience.
Dying from cancer
I know that about 1/3 of all people will die of cancer. I hope not to be one of these people, but I can accept this statistic. Of all these people who get cancer, only about 1.4% of them have glioma brain cancer. Of those 1.4%, even fewer get a grade II astrocytoma. I am on the outer edge of the bell curve with my brain cancer. Even more, nobody knows why I got this brain cancer, and it was not preventable. I should repeat that. My brain cancer was not (and is not) preventable. It is only discoverable.
So, for me, there is nothing to get mad about. There are only new things to do...new things to change...new adaptions in life...new treatments. Compare this to the story that was told tonight in the movie "Water." I am not trying to make socio-political points about a topic that is new to me, but the concept at play in this movie is that people are suffering in ways that CAN be prevented. That is worth getting mad about.
Final note
I have not been granted this peaceful morality in life because I have lived through some major brain surgery. I know my surgery sounds dramatic. It was. Dr. Kelly and his team at NYU were deep inside my brain where one error could have left me not walking or talking. Very intense. However, I made it through that and more normal elements of life are layering on with each day and each month.
One of those returning layers of life is anger. Although I am learning more peaceful ways of existing in my life, I am still very capable of feeling anger. After all, I am still a human being. I was reminded of all this tonight in watching the move "Water" because of the anger I felt for good people being treated poorly by other people who were making selfish decisions. That -- THAT -- is what makes me mad.
All this gave me more perspective that I need. It helped me to see that my effort to deal with brain cancer is pretty small in the scheme of things. All this energy by my medical team is being pumped into one person (me). There are so many other people who need the energy of others -- people who have situations that are far more finite and fixable than mine.
Although a tall order, the ideal would be to have solutions to all these things someday. Idealistic? Yes. Wrong? No.
