Thursday, 11:55 PM
High-Level Journal Summary: In advance of going to NIH to review my Perfusion MRI, comparing how I felt in cycle 10, cycle 16, and now in cycle 22. In doing so, I realize that I am really changing in what I expect from each visit. At the start, I did not know if I could go this long on chemo, let alone how I would feel as I went in to review my MRI at this stage in my chemo treatment.
These comparisons aside, there is one big question that needs to be answered on 7/6/07. That is, when do we stop my chemotherapy treatment. Will it be now? Cycle 24? Cycle 26? Cycle 28?
I have no expectation that my tumor has enhanced in the past two months. I know that I am focused and humble about my brain cancer treatment. I know that I am doing everything possible in my treatment, which brings me peace. But, when do I stop chemo? That is the question that has now risen to the top and should remain there for the rest of 2007.
Countdowns:
1.) Day 25 of 28 in my 22nd 5/23 Temodar chemotherapy cycle. My left arm is bruised today from where the catheter was inserted for my 7/3/07 Perfusion MRI. The person inserting the catheter "missed" on the insertion and was moving the relatively large needle around under my skin trying to hit the vein in my arm. It took about 30 seconds to achieve this and caused external (and internal) bleeding. This was the first time this has happened during catheter insertion. It took until today for a brownish-yellowish bruise to appear where the needle was inserted. I knew this was not a quality insertion, especially when she ended with the words, "Are we still friends?" I could tell she felt bad about it.
2.) Meet with Dr. Howard Fine on 7/6/07 at 5 PM to review my 7/3/07 Perfusion MRI.
3.) Bi-weekly hematology report on 7/8/07 to see how my blood levels are doing.
2007 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was yesterday.
2.) In 2007, I have had 30 SPS's in 186 days. This is an average of 1 SPS every 6.2 days, exactly.
Website Updates:
The June 2007 Awareness Statistics have now been posted. The search engine optimization (SEO) efforts of the past month have paid off. The number of brand new readers to 38 Lemon (in just the last month) has increased from 15,836 to 24,177 (see red part of the graph below). I believe that this is a great way to quantify awareness about brain cancer. I also believe in the importance of brain cancer awareness, which I call "the underground disease" or "the underground illness."
Actual Journal: On Friday, I go to NIH to meet with Dr. Howard A. Fine, Chief of the Neuro-Oncology Branch of NCI. He is also my neuro-oncologist. It will be our opportunity to review my 7/3/07 Perfusion MRI and assess how my chemo treatment has progressed in the past two months.
As I walked for an hour this evening, I thought about how I felt prior to this meeting. That is a question which only I can answer. In the past, I have felt everything from angst to humility before learning the results of my Perfusion MRI.
Chemo cycle 10 thoughts
On 7/27/06 (cycle 10 of chemo), I asked things like "What will be found this time? There is NO guarantee of what will have happened in the past few months. Have things degraded, stayed the same, or improved? Anecdotal evidence aside, nobody in the world can predict the answer. As such, this 'MRI Moment' always brings a mix of feelings...I wonder what data is being discovered...It may be great news. It may be bad news."
Well, I now read my cycle 10 thoughts and sense outright trepidation. That is before I knew there was a measure of "shrinkage" that would eventually result from my Temodar chemotherapy medication.
Chemo cycle 16 thoughts
On 1/16/07 (cycle 16 of chemo), I noted that "I never seem to escape (the above) feelings. I almost don't want to, either. Could I ever get to the point of hubris where I expect good results each time? If I were to do that, I would not be planning for the worst while hoping for the best. In advance of each MRI, I get myself in the mindset of getting the worst possible news. I gear myself up for such an outcome. That is not easy emotionally. Perhaps that is why I require so much rest this evening. It can be a bit draining emotionally."
In my cycle 16 journal, I was realizing stability in my brain tumor and was cautiously optimistic. However, I was trying to guard against having expectations of good news. As always, I was planning for the worst but hoping for the best.
Chemo cycle 22 thoughts
Another 6 cycles of chemo have passed. This is now cycle 22 of chemo, not cycle 10 or cycle 16. How do I feel this time around? Do I react the same? Here are some thoughts which immediately come to mind (in no order).
1.) In cycle 22, I have enough data, education, and self-awareness that I do NOT expect to see any kind of fast-growing tumor. That just does not match the data I have to date. So, that is not an overt concern at this stage.
2.) In addition, I do not have to remind myself about succumbing to hubris. I know full well how focused I am:
• I exercise in the snow, the rain, the good weather.
• I track data to the point where I know it better than most of my doctors.
• I have only had three days (I believe) during my entire chemo treatment when I have not napped. That's three days out of 1 year and 247 days! I am taking care of my body.
• I have had tests that not even my doctors prescribed, discovering anomalies that they essentially said were "unlikely."
3.) I am focused, focused, focused. Factually, I know this to be true. So, whatever happens, I am at peace that I am doing just about everything at my disposal. This brings me peace.
4.) I have nothing to apologize for, and I know that I am not being cocky about how things have progressed to date. It is NOT lulling me into being complacent. I have the data points to prove it (to myself).
Shifting perspectives
As I head into NIH/NCI/NOB (National Institutes of Health/National Cancer Institute/Neuro-Oncology Branch) on 7/3/07, I have a specific agenda. First, I will listen and take lots of notes. Then, I have a specific list of questions for Dr. Fine.
I objectively understand that an enhancement of my tumor is extremely unlikely at this stage. I subjectively feel that I am doing all I can to advance progress. I intellectually go in with specific questions to advance my knowledge.
All this makes me realize that my perspective has changed over time. My reactions in cycle 10 differ from cycle 16. My reactions in cycle 16 differ from cycle 22. I did not expect that to be the case back in cycle 10.
The elephant in the room
All this said, there is one HUGE question that needs to be answered right now. One and only one. The big question right now is whether or not to continue with Temodar. It will be stopped at some point, but when? That is the question that needs to be assessed with great scrutiny. Will it be at the end of cycle 22? At the end of cycle 24? Cycle 26? Cycle 28? Cycle 30? When? That is the new big question that needs to be studied with each visit. That is where my focus needs to be during this visit with Dr. Fine.
In summary, I have no expectation that my tumor has enhanced in the past two months. I know that I am focused and humble about my brain cancer treatment. I know that I am doing everything possible in my treatment, which brings me peace. But, when do I stop chemo? That is the question that has now risen to the top and should remain there for the rest of 2007.
