Wednesday, 11:55 PM
High-Level Journal Summary: After my MRI review at NIH, an unexpected turn of events. It appears that my tumor has now changed state from a slow-growing tumor to a fast-growing tumor.
As a result of this, I was ordered to stop taking chemotherapy immediately. As well, I need to be in surgery as soon as possible. We need a biopsy within 10 days to learn the pathology of my brain tumor. From there, we can determine and start a new type of treatment to stabilize this brain tumor again.
My MRI's are in transit to New York City at this very moment, and I just got an e-mail back from neurosurgeon Dr. Patrick J. Kelly. He understands my situation and will review my MRI's on 12/20/07. At that point, we will talk and see if I will have a biopsy or brain surgery next week at NYU.
This tumor is acting aggressively right now, but we are responding with at least equal aggression. We are going to be smart about this, but we understand that this is probably time to pull out our "big guns" and really go at this thing hard.
Countdowns:
1.) Day 24 of 28 in my 28th 5/23 Temodar chemotherapy cycle.
2007 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was yesterday. None today!
2.) In 2007, I have had 190 SPS's in 353 days. This is an average of 1 SPS every 1.9 days.
Actual Journal: At 5:30 PM, I met with Dr. Howard Fine at the National Cancer Institute. This is not a meeting I will ever forget. Impossible.
Dr. Fine came into the room to see me before the CRNP had any time to meet with me. He asked how I was doing, as he always begins our conversations. I told him about the 57 Simple Partial Seizures (SPS's) I had in November, as well as the 57 SPS's I have had so far in December. He did not look surprised. It was because Dr. Fine had information that I did not yet have.
Dr. Fine then told me that there are enhancements on my MRI, which means there has been tumor growth. He took me back to the room where my MRI's were ready for viewing.
Is that my MRI?
Usually, Dr. Fine has two co-registered MRI's which are roughly 1 year apart in time. This time, he had my 10/15/07 MRI right next to my 12/18/07 MRI. In other words, these MRI's were only two months apart. They did not look at all the same. The "hole" in my tumor from my 5/5/05 brain surgery was gone and there was this big fuzzy mass in its place.
I immediately asked if this was my MRI. Dr. Fine said that he had the exact same reaction. But, he pointed to all the markings which show that this is indeed my MRI. Plus, it was in the same part of the brain, further verifying that this was my MRI. Basically, there was not good news to report.
Unexpected news
As always, I scribbled notes as Dr. Fine reported his observations and medical opinions on my current situation. These notes are as follows:
1.) There are new areas of enhancement. As a result, Dr. Fine wants a biopsy as soon as possible.
2.) The cavity from brain surgery has now filled in.
3.) There is swelling.
4.) There is a lot of enhancement.
5.) Dr. Fine is concerned "that it may have changed" in grade from a slow-growing tumor to a fast-growing tumor.
6.) The enhancement is in the frontal lobe and temporal lobe. It is a diffuse enhancement, so the MRI looked more fuzzy than anything else.
7.) I asked Dr. Fine about how unusual something like this is. He told me that it is "not very common to see this kind of change" in a grade 2 astrocytoma.
8.) I was ordered to no longer take any Temodar chemotherapy medication. I asked why. The answer is simple. "It is no longer working."
9.) Dr. Fine recapped where we are and what we need to do.
• It is a transformed tumor -- possible a high grade tumor now.
• A biopsy and pathology is needed ASAP.
• Dr. Fine needs to determine if it is a high grade tumor.
• If I have a fast-growing tumor, we need to throw everything at it.
• We need to control what we can control.
• Be smart.
• Be aggressive.
10.) Dr. Fine gently reminded me that we cannot control everything.
11.) My Mom called the Debra Rivera on the spot. Debra is the assistant of neurosurgeon Dr. Patrick J. Kelly. Debra confirmed that Dr. Kelly will be in the office on 12/20/07.
12.) Dr. Fine secured copies of my MRI's on CD right away so that we could FedEx them to Dr. Kelly this evening.
13.) Dr. Fine will work with Dr. Kelly to get a frozen specimen of my biopsy so that more detailed analysis of the tumor can be done at NIH/NCI/NOB.
14.) As I inquired about what may have caused this to happen, Dr. Fine explained that I have millions of brain tumor cells. He said that there is "one bad actor" in that group that has survived. That single bad cell is what has undergone mitosis enough times that it is now growing at an exponential rate.
15.) The changes we are seeing in the 12/18/07 MRI were probably taking place over the past several months. However, these changes were happening at a microscopic level. As such, they did not have enough collective mass to be seen via Perfusion MRI. Only in the past two months has the mass gotten to the point where it can be seen via Perfusion MRI.
16.) Only after we have the pathology complete can we decide on what treatment is most appropriate. All we know for sure is that it will no longer be Temodar chemotherapy.
17.) Being logistical, I asked about the desired timeframe for next steps. Dr. Fine would like the biopsy to be done within the next 10 days. Absolutely no longer than that. The sooner the better. Then, pathology reports need to be generated ASAP. If I have surgery next week, then we could get the pathology done and be talking about what treatment to use next by the first week in January.
18.) The issue of biopsy versus more debulking of my brain tumor was discussed. Dr. Fine said that "getting 30-40% of the brain tumor doesn't help us." Why? Because this is an aggressive tumor at this point, so it would take additional time to heal from brain surgery before more treatment could start. By that point, whatever was removed could have already grown back.
19.) Dr. Fine concluded by saying that I should expect some form of biopsy.
20.) If Dr. Kelly is not available to do my biopsy, then Dr. Fine said that we need to find another neurosurgeon ASAP. Dr. Fine could help with recommendations. I told Dr. Fine that if we face this situation, a new doctor would have to be approved by Dr. Kelly. In other words, if Dr. Kelly did not give a thumbs up to me about a certain doctor, I would NOT go to them. I just hope I can get Dr. Kelly to do this biopsy.
FedEx time
The first thing we did after this meeting was find a FedEx station. We found a store, but it was 7 PM and we missed the last pickup time of the day by 30 minutes. However, they were able to direct us to a central location where they would pick up packages until 8 PM.
We found this FedEx station and had all my MRI's in the mail to Dr. Kelly by 7:30 PM. By tomorrow morning, they will be in his office for review. We should be able to start sketching out a plan of action within the next 12-18 hours. I'm just thankful that we were able to find this FedEx and get these CD's in the mail on time. We saved an entire 24 hours by doing so.
Every day counts
Right now, my mind is in logistical mode. So many things I have had on my plate are just dropped. The thing that matters is getting a biopsy. If Dr. Kelly could do this on Monday (12/24/07), I would be in New York for it. I am openly encouraging the most aggressive approach possible regarding timeline.
• We need the biopsy ASAP.
• We need the pathology ASAP.
• We need to determine the next treatment ASAP.
• We need to start the next treatment ASAP.
Why? Because this tumor is growing aggressively in my head this very moment. As I type, I know what is going on in my head. The longer we wait, the more damage is done. The sooner we start a new treatment, the sooner we can put the brakes on this nasty change. We need to start stabilizing what is happening, and every single day is critical.
Heard from Dr. Kelly
When I started this journal entry, I shot a message to Dr. Patrick Kelly to let him know the situation. He's a late-night worker like me, so I was hoping he would be online, too. Well, I just got a message back from him:
Sorry to hear this. I have to do a surgery in the morning and will head back to the office as soon as I'm done. Hopefully the scans will be there. I'll call you as soon as I've reviewed them.
That is great news. His assistant knows what is going on. Dr. Kelly knows what is going on. My MRI's are in transit to New York City at this very moment. Plus, Dr. Kelly and Dr. Fine are both going to be available over the holiday season. They are not committed to personal trips during this time, so I know that there will not be delays because of this. (That is just damn good luck.)
Being more aggressive than the tumor
So, a lot has changed in the past 6 hours. We got completely unexpected information and already have a plan in action. I am going to push and push and push until I am in surgery sometime next week. With the way things have gone so far, we are well on our way towards achieving this goal.
This brain tumor may have its own wicked intelligence. However, it will be greeted with as much brain power, technology, and clinical experience as possible. I am just happy that I already have my "A Team" in place so that we can respond so incredibly quickly.
What a turn in events. Mark the day. 19 December 2007. That's 3 years and 13 days since I was first diagnosed.
