15 May 2008
Thursday, 11:30 PM
High-Level Journal Summary: My first day of life outside of the Inova Hospital, without waking in the hospital or going to bed in the hospital. After giving a quick list of 10 top events since that time, here we are, 3.5 years later. I am at this new point. This is where we are as a team. It gives a new, high-level view on where we are and where we are headed. What a learning point.
It leaves me wondering how such a learning for dual treatment was so widely misunderstood by family medical team. We thought we were so ahead of it because of our performance during my first two chemo cycles. Now, it leaves me completely humbled by it all. I am taking a back seat and listening to the medical team we have worked with, come to love, and trust entirely.
These next chemo cycles are so critical, and I will approach with as much trust and respect as I do now. They will be the toughest things I will face in all of what we have done to date. I have not a doubt of trust in that statement, and that is a lot to say after 3.5 of brain tumor work.
Countdowns:
1.) Day 10 of 21 in Cycle 3 of Carboplatin + VP-16 chemotherapy.
2.) Meet at Dr. Dipti Patel's office on 5/16/08 to see how I am doing after seeing her at the Inova Hospital on 5/14/08 (Wednesday). I am really looking forward to her incredibly important input.
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 3 days ago, on Monday night/Tuesday morning -- just before heading to the Inova Hospital. They were all mild and 30 seconds or so. Since then, I have been okay. Hospital records are needed to get right back on track with where I was with precise data.
2.) In 2008, I have had 64 SPS's in 136 days. This is an average of 1 SPS every 2.1 days.
Actual Journal: It took about 30 minutes with my Mom just to get our overall bearings for the last week on what has happened exactly during the past week. We were able to get a solid agreement about when I got to the hospital, when I left, and what has happened since. Normally, this is easy since I have been such a solid journal in life and my words as so accurate. But this last week? I have been relatively out of touch, leaving me at the need to reconstruct each day with the help of other people. I hate to have this feeling, even if only at a high-level touch for the day.
I feel a bit caught today, and that gives me a more solid grip on where I have been and where I am going next. Amen. It helps so much in so many odd and solid ways.
Where am I?
There is far more than I can write in the next few days about what had happened with me this evening. It will take the next several evenings to catch up. So, here is a quick, high-level summary as a starting point.
1.) I made it from 12/6/04 diagnosis through my 5/5/05 brain surgery that was considered inoperable.
2.) I then made it through 28 cycles of Temodar chemotherapy, which is unusual given my brain composition.
3.) My brain tumor changed from slow-growing brain tumor to a fast-growing brain tumor. This is not unusual at all, from a medical standpoint (although it felt the other to me personally).
4.) I had an immediate brain surgery on 12/27/07 by Dr. Patrick J. Kelly, once again.
5.) I went through an uncertain radiation from 1/16/08 to 2/26/08 at the National Institutes of Health.
6.) After waiting for an MRI on 3/18/08 to review on 3/19/08, we found that my radiation was successful. This was great news, obviously. "We got to first base" after all that surgery and radiation.
7.) We began dual therapy of Carboplatin + VP-16, which was started on my Dad's birthday on 3/25/08.
8.) I did very well on my fist 2 cycles of this 6 cycle-period.
9.) I got my butt kicked on the 3rd cycle. I was not to the surprise of my medical team. It was to my total surprise. The reason? Because of the Neulasta shot delivered to me on Day 4 of this chemo cycle. It adds up tremendously to me as a patient. I has no idea how much it would hit me physically.
10.) The pain from Neulasta was so severe that I was on the phone every few hours with my Mom, telling her that we were in a dangerous spot. I told her that were perhaps needed to have me in the hospital as soon as possible. I even cried over the phone to her from this amount of pain. The cause? The Neulasta caused the bone marrow to create lots more White Blood Cells. This caused White Blood Cells are actually created in the Sternum and Hips. The crowding of the young, immature cells may cause pressure and extreme pain.
I did NOT have this pain during the first two cycles, but the pain all added over time where it took 2-3 days for it to pass during this third chemo cycle. Cycle 3 here has DEFINITELY been the most painful thing other than coming out of my 5/5/05 brain surgery. Period. It was so painful, and we have learned so much as a result.
Sleep needed
There we are, 3.5 years later. I am at this new point. This is where we are as a team. It gives a new, high-level view on where we are and where we are headed. What a learning point.
It leaves me wondering how such a learning for dual treatment was so widely misunderstood by family medical team. We thought we were so ahead of it because of our performance during my first two chemo cycles. Now, it leaves me completely humbled by it all. I am taking a back seat and listening to the medical team we have worked with, come to love, and trust entirely.
These next chemo cycles are so critical, and I will approach with as much trust and respect as I do now. They will be the toughest things I will face in all of what we have done to date. I have not a doubt of trust in that statement, and that is a lot to say after 3.5 of brain tumor work.
