Monday, 11:45 PM
High-Level Journal Summary: Getting slides in the USPS mail that contain samples of my brain tumor. I only learned two weeks ago that such samples are available to patients, and now I finally have this critical information in my physical possession.
32 months ago, to the day, I was diagnosed with brain cancer and we all desperately wanted this information. Now, I have samples of my brain tumor in my physical hands. While I understand what has been done so far, what we are doing right now, and what our medical plans are in coming months, it does not take away from the power of this moment.
Countdowns:
1.) Day 1 of 28 in my 24th 5/23 Temodar chemotherapy cycle. I canceled several planned things today so I could stay focused and not get kicked back on my heels during this week of taking chemotherapy medication.
2.) Inova Brain Tumor Support Group Meeting on 8/7/07.
2007 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 3 days ago.
2.) In 2007, I have had 32 SPS's in 218 days. This is an average of 1 SPS every 6.8 days.
Website Updates:
An online journal was added today for 1/6/05. In this journal entry, I once again reveal that I am somewhere between my old life with Rivermine and my new life with brain cancer. I had not quite shifted gears yet, being alternately consumed by each. This is a transcription of my handwritten journal from that day.
Actual Journal: On 7/24/07, "Brain Tumor Twin" Jill was in town from New York City. She was here in advance of her meeting with neuro-oncologist Dr. Howard A. Fine at NIH/NCI/NOB (National Institutes of Health/National Cancer Institute/Neuro-Oncology Branch) the next morning.
As can be visually seen in my 5/29/07 online journal entry, Jill and I have a lot in common. Not only do our MRI's look a lot alike, but our medical teams are almost identical. Dr. Patrick J. Kelly, neurosurgeon. Dr. Howard A. Fine, neuro-oncologist. Dr. Steven V. Pacia, epileptologist. Dr. Douglas C. Miller, neuro-pathologist. Both of us even had brain surgery at the age of 38. How wild is all this?
What I learned from Jill
Jill and I had dinner on her 7/24/07 visit to Virginia. She had a little surprise for me as we had an outdoor dinner at The Carlyle in Shirlington, VA. On that beautiful summer evening, she opened her purse. What did she pull out? Her brain.
Well, that does sound a bit dramatic, doesn't it? But, she had samples of her brain tumor, right there in her possession. Granted, these were only glass slides with stained samples of her brain tumor from her 6/7/07 brain surgery. However, they were RIGHT THERE in her hands. They were not in a neuro-pathology lab out of her immediate control.
I was just amazed. I asked Jill how she got these slides. After all, when I visited neuro-pathologist Dr. Douglas C. Miller on 8/2/06 (at Bellevue Hospital in New York City), I just wanted to know where they were located. Once I saw they indeed existed, I was satisfied that they were in that very building and not in some storage shed where they could potentially be lost.
Taking action
Once I knew that Jill was able to get official samples of her brain tumor for her personal records, I was all over it to get samples of my brain tumor for my personal records, too. Jill said that she did not want to entrust this critical medical information to anyone else. I completely agree with her. No matter how many redundancies are in place to protect our brain tumor samples, I want to have a sample in my personal possession, too.
It took about a week to fill out the paperwork that was needed by Belleview Hospital. The paperwork was not all that complex, but the overall process is not done that often, so I ended up completing and resubmitting this paperwork several times before all the correct data was collected and tumor samples could officially be released to me.
Brainy mail
When the USPS mail came today, I opened my mailbox, ripped open a thick padded envelope, and found a protective plastic container, as shown below:
Then, I opened the plastic container and found two glass slides.
As revealed above, these slides look transparent. If looked at closely with the naked eye, very slight red stains can be seen. I have to look extremely closely to see these stains. That red stain is used to highlight the brain tumor cells. When this slide is examined under a microscope, that red dye really helps to identify the brain cancer cells in detail.
If I had even a simple microscope at home, I could personally examine these slides and see my brain cancer cells in great detail. Having seen my brain cancer cells on 8/2/06, I can personally say that this would be quite a conversation starter at any party.
Ironic timing
So, bigtime payoff today. I got the tip from Jill, requested samples of my brain tumor, filled out all required paperwork, and received slides in the mail today. I've got a special place in my file cabinet just for these brain tumor slides.
I do take note of the timing of all this. It was on 12/6/04 that I went to the Emergency Room at Inova Fairfax Hospital, got an MRI, and learned that I have a brain tumor. 12/6/04. That was EXACTLY 32 months ago -- to the day.
32 months ago, we desperately wanted the information contained on these slides...the slides I can so calmly hold in my hands today while listening to Stravinsky's L'Oiseau de feu Der Feuervogel (The Firebird) in my living room. Well...that piece does have its fierce, passionate moments, no doubt. Perhaps that adds to the irony of the moment as we all fight the brain cancer contained in these slides with such passion.
