9 September 2008
Tuesday, 9:35 PM
High-Level Journal Summary: Getting a new White Blood Cell (WBC) count today. Oddly, it was 2.80 K/uL, just 0.20 K/uL short of what is needed to get into a clinical trial at the National Institutes of Health (NIH).
This caused our backup plan to kick into full gear. 2.80 K/uL was the marker we already had in place for going into another gear and wait until the end of the week before starting Avastin. Now, I only have 3 days to get up another 0.2 K/uL.
Think of the money that could be saved, even though I got a generous offer today to pay for all medical costs until Avastin was approved by the FDA (Food & Drug Administration). I have been financially independent since I was 18 years, and that is not something I am willing to change, even in the event of brain cancer.
Countdowns:
1.) On 9/10/08, check my blood levels again and go to NIH immediately if my White Blood Cell (WBC) counts are 3.0 K/uL or more. Today, my WBC count was 2.80 K/uL. That is so close to the 3.0 K/uL lower limit needed to enter the clinical trial at the National Institutes of Health (NIH).
2.) On 9/10/08, meet with a new lawyer to fix things in my Trust that need to be worded correctly. We went today, but the lawyer was not available. I appreciate the help in getting this meeting, but I was not happy with going all the way to her office and being put off as we were. I do not care who you are, this is not acceptable behavior (from all that I know).
2008 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 12 days ago.
2.) In 2008, I have had 79 SPS's in 253 days. This is an average of 1 SPS every 3.2 days.
Actual Journal: We were supposed to start taking Avastin on 9/10/08, but we hit a snag that we were expecting. Dr. Fine said that if we hit 2.80 K/uL in today's Complete Blood Count (CBC) reading for my White Blood Cell (CBC) count, then we would have to do a quick reassessment. That is within a margin of error for the 3.0 K/uL reading we need to get into the Avastin + Enzastaurin Clinical Trial at the National Institutes of Health (NIH).
Like a B Script text in a movie today, I hit 2.80 K/uL (exactly) in today's WBC check. Exactly. No joke. I was not too surprised, though. It was about 9:00 AM in the morning, I had a great shower, and I was fresh. I figured that my count would be up, all given the way I felt.
New plan
Based upon the last paragraph, here is our new plan:
1.) Get new blood checks every single day for the rest of the week.
2.) If I get over 3.0 K/uL for my White Blood Cell count, then I need to go to NIH immediately. There, the only test which must be redone is my CT Scan. They can bump someone so I can get my CT Scan immediately.
3.) Once I get my CT Scan, then I am in a position to get the Avastin + Enzastaurin Clinical Trial. I have the very last position available, and out of ethics, it is being held for me until I am announced unavailable.
4.) If I get into the clinical trial, I will save a tremendous amount of money.
5.) If I do not get into the clinical trial, I will be in formal position for getting all the drugs paid for by Genentech. That was confirmed by Genentech and my local oncologist's office today. I would have to pay for services, but I imagine that this would be quite affordable for the time being.
Generosity turned down
I got a generous offer from a close family member to pay for this treatment outside of NIH, but I have far too much pride to allow this to happen. I will have to decline. Monies are gladly accepted by 38 Lemon for the promotion of brain cancer awareness from a patient's perspective, but that is the extent of what can be accepted. I've been financially independent since I was 18 years old, and I refuse to allow this to be broken.
What a week this is turning into. How will it turn out? Without these 2 new tumors, we could just wait it out and give me a tumor holiday, but that is far from the current situation at this time. As such, we have to work within certain parameters, which brings us to that measley 3.0 K/uL mark for my WBC count.
Will we get past 3.0?
Will I actually hit this 3.0 K/uL WBC mark? Great question. I sure wish I had the answer for everyone now. It would allow us to take less risk and get started with certainty, right here and now.
