1 May 2006
Monday, Midnight
High-Level Journal Summary: Anticipating my 5/2-6/06 trip to New York City for medical meetings. This trip coincides with the 1-year anniversary of my 5/5/05 brain surgery, thus stirring up unexpected thoughts and feelings. As I head into this trip, 3 things:
1.) I have more context for what happened on 5/5/05.
2.) I know that my life has been changed.
3.) I see the beauty that brain surgery has brought.
I feel something special as I head to NYC. I don't know why, but there is an allure about this trip. I can feel it. Perhaps I will understand more in a week.
Countdowns:
1.) Day 15 of 28 in my 7th 5/23 Temodar chemotherapy cycle.
2.) My quarterly EEG and Perfusion MRI with Spectroscopy will both be conducted at NYU on 5/3/06.
Seizure Activity:
1.) Last Grand Mal Seizure was on 6/30/05.
2.) Last Simple Partial Seizure, or SPS, was 21 days ago (60-second heavy seizure that woke me from deep sleep). Is 3 weeks a record for me? I would need to check my notes from the past year to verify.
3.) I have now had 17 SPS's in the past 130 days. That is an average of 1 every 7.6 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: This evening, I am preparing to head for New York City on 5/2/06. Before this trip, I have a couple of local meetings. One is with my local oncologist and one is with a support group.
My local oncologist, Dr. Dipti Patel, is very pregnant and is on bed rest until she delivers her second child. So, my bi-weekly meeting with her has been transfered to another oncologist, Dr. Miller (who I have never met). The point of the meeting is to review my Temodar chemotherapy progress for my 7th chemo cycle. I am hoping that this will be a fairly benign meeting. While Dr. Patel's health during pregnancy is key, I am not that enthusiastic about the lack of continuity in my chemotherapy oversight.
I could head to NYC right after this meeting with Dr. Miller, but I would rather go later so I can attend the monthly Brain Tumor Support Group Meeting hosted by Inova Fairfax Hospital. Consistently valuable, this meeting may be one of the best to date. There is a Race for Hope on 5/7/06 to support the cause of brain tumor awareness, and many members of this support group will attend. As well, Dr. David Schiff from UVA will be speaking in Fairfax, VA on 5/9/06, which is fairly rare since UVA (the University of Virginia) is about 3 hours from Fairfax. Given all these events in early May, I anticipate healthy discussion at this noon-time support group meeting.
After all this, I am highly-anticipating my trip to NYC. It is amazing to me that this trip is happening on the 1-year anniversary of my brain surgery. Perhaps it is a curious thing, but I look upon this anniversary as a big deal.
Anticipating the anniversary of brain surgery
It is surprising how much I am thinking about the anniversary of my 5/5/05 brain surgery. Compared to a year ago, here are the things that I did NOT know as well as I do today:
1.) My parents did not want me to have this surgery.
This was an emotional rather than intellectual reaction on the part of my parents. They were going to support me in whatever I ultimately decided to do for treatment, but they were just worried sick. They hid it so well that I never knew this.
2.) The decision for surgery was truly my decision.
My Mom, Dad, and I worked so closely together on our treatment research that I subconsciously thought that decisions were group decisions. Yes, I knew that I made the ultimate decision, but somehow, I thought that my parents had steered me in the direction of brain surgery because they wanted me to have this treatment. (It did not matter since I knew for myself that surgery made sense.) But, little did I realize how scared to death they were. If I had said "no" at the last moment, they would have been relieved emotionally.
3.) Dr. Kelly was hesitant to do this surgery.
Dr. Kelly said that my operation would take years off of his life. Perhaps that is a little bit of dark humor, but my post-surgery research on brain tumors and brain surgery has helped me to better understand what had to be done to make this happen. All I can say is that Dr. Kelly is a brave, brave man for leading his NYU team through brain surgery for me. It is intensity taken to new heights. No room for errors at all.
4.) There were issues during surgery that were big concerns at the time.
The texture of my brain tumor was a bit tougher that anticipated. This almost caused an abortion of the surgical procedure after the actual craniotomy and pulling apart of the Sylvian Fissure. But, techniques were used to get around this "tough tissue" issue and still do a resection of about 50% of the brain tumor. These were judgment calls that had to be made on the spot by Dr. Kelly. Can you imagine making such calls, knowing that a human being was on the other side of these decisions? What gravity.
5.) I thought I would just recover from surgery and return to work within a few months.
Little did I realize how major this event was in my life...and I was prepared for the worst. But when I woke and saw that I had lived, I thought that I would just return to the way that things were before surgery in relatively short order. Instead, I gradually came to realize that things are quite different. The path is more circuitous. The path is longer.
Life has changed
I guess what all this gets down to is that I realize -- 1 year later -- how much of a life-changing event this has become. I have a much more full appreciation for this. No matter what comes my way in the future, I know that the way I perceive the world will never be the same again.
And what is really weird, in some ways, is that I almost have fond memories of my 5/5/05 brain surgery. It is like this happy time in my life...something that I remember with good feelings. I know that I felt pain after surgery, but there are so many good things that came before, during, and after my brain surgery that I am looking back on it with sentimentality.
A quick summary
This has been a somewhat rambling online journal entry...a flowing range of feelings. That said, here is a summary of what I am feeling as I head to NYC:
1.) I have more context for what happened with my brain surgery. This humbles me. Plain and simple, parents and doctors were brave on 5/5/05.
2.) I have a more full appreciation that this brain surgery has changed my life. Life will not be like it was before brain surgery. That has already been proven.
3.) I know the good that has come from this brain surgery. I have never received such outflows of love and support from family and friends.
Let me be even more concise than the above. I'm going to NYC with these thoughts:
1.) Better context for 5/5/05.
2.) Knowledge that my life has been changed by brain surgery.
3.) Appreciation for the beauty surrounding brain surgery.
What does this do to me?
Good question. What does this do to me? I suppose that will be one of the things that is answered when I go to NYC this time around. I am certainly not trying to live in the past. After all, I am only about 25% through my second form of treatment, chemotherapy. I still have a large tumor in my brain. This tumor is still slowly growing. This is not a past event.
But, I feel something as I head into this trip. There is something special about this trip. I hope I can articulate this better in the coming week. For now, I have this almost lustful feeling for making this trip. It feels very special. It is actually making me cry as I type. I feel that damn lucky.
