22 May 2006
Monday, 11:55 PM
High-Level Journal Summary: The unexpected death of the Director-General of the United Nations World Health Organization (WHO), Lee Jong-wook.
All new treatments for brain tumors must be approved by WHO before they are considered standard practice for brain tumor patients, so the drive for medical innovation is often in conflict with (essentially) the "approval process" of WHO.
The terrible irony of this breaking story is that Lee Jong-wook died after surgery to remove a blood clot in his brain. Lee Jong-wook had worldwide oversight of practices related to the health of brains (among many other things), and he died after brain surgery.
Countdowns:
1.) Day 8 of 28 in my 8th 5/23 Temodar chemotherapy cycle. My fatigue factor was not nearly what it was on day 7. I felt much better today. Amen.
2.) Bi-monthly MRI at NIH is on 6/7/06. This will determine if my brain tumor is larger, smaller, or the same size.
Seizure Activity:
1.) Last Grand Mal Seizure was on 6/30/05.
2.) Last Simple Partial Seizure, or SPS, was 4 days ago. It lasted 2 minutes and required me to take my emergency drug, Ativan.
3.) I have now had 23 SPS's in the past 151 days (since 12/22/05). This is an average of 1 every 6.5 days.
Actual Journal: Only one time before have I gotten such response from an online journal entry. The "Chemosabe Cinema" journal from 5/21/06 generated all sorts of direct responses, from corrections about the spelling of the name to corrections about who played what part in "The Lone Ranger" to offers to actually pay for movies I see on Chemosabe Cinema weekends (yeha!) to folks who also want to watch movies with me on Chemosabe Cinema weekends.
The other time I got this kind of overt response? 4/3/05 when I wrote about saving a worm -- an actual event that felt metaphoric for the kind of medical attention I have been getting to deal with my brain cancer.
Well, for the moment I will simply say that any errors I made in stories about "The Lone Ranger" are generational in nature. I have only caught a few re-run episodes in my life -- that's it. The basic point of turning a negative weekend into a positive one is already moving in the right direction. I truly welcome this generous response. I can see this developing nicely into something healthy for more people than just me.
The real story today
That was a light introduction. However, there is an ironically sad story to report today, very much dealing with the health of brains.
All new treatments for brain cancer must get World Health Organization (WHO) approval before they are considered standard practice for brain tumor and brain cancer patients. Therefore, the drive for innovation is often in conflict with the methodologies (and slower pace) of WHO.
As a studied and informed patient, I have seen first-hand the friction between a.) doctors who are dealing directly with patients, and b.) the efforts of WHO to place worldwide parameters on treatments. As I see things, there is a certain and real tension that exists -- even though all doctors I have visited have been nothing less than polite about the patriarchal role of WHO in medical practice.
So, my awareness of WHO is based on what practices are approved in the world of brain cancer treatments. As I take chemo for slow-growing brain cancer, there is sufficient evidence to allow Temodar chemotherapy medication to be prescribed to me. But if I understand things correctly, my current treatment for brain cancer does not have WHO endorsement yet. I will be one of the data points who makes the case for eventual WHO approval, but that time is yet to come. Things move slowly when it comes to WHO. They are controlling worldwide standards, so the slow pace is easy to understand.
Death of the Director-General of WHO
I do not want to speak out of hand about things I don't understand. That has always been a premise for my online journals. I write about direct experiences I have as a brain cancer patient. I write to that and stop there.
What I know from today is that I was driving home at noon from Best Buns, listening to National Public Radio in my car. All of a sudden, I heard the story that the United Nations Director-General of WHO, Lee Jong-wook, died after brain surgery to remove a clot in his brain. This was breaking news that took national headlines.
The questions that arise
First, this is a human being who died. I have respect and sympathy, even though I have never met this gentleman. To rise to his level by the age of 61 says much about his drive to help others, which I admire tremendously. It also makes my questions sharper:
1.) Could this blood clot have been discovered earlier?
2.) Could a blood clot be discovered by having regular MRI's -- something which is NOT a standard part of annual physical exams yet?
3.) Could this have been discovered earlier? If so, could his death have been prevented at this time?
4.) Who did the brain surgery? Does Dr. Patrick Kelly (my neurosurgeon) know her/him?
5.) Will this attention to brain surgery have any lasting impact on current battles that are being waged to be more aggressive with WHO about approval for brain cancer treatments?
6.) Will there be any REAL coverage of what a blood clot in the brain really means?
7.) Will there be an educational aspect of this brain-related death? Or, will brain-related deaths remain a voo-doo topic of conversation, too complex to put into sound bytes (and therefore left alone)?
The list of questions goes on, but perhaps the point is made. I hope to learn more about what really happened, but the fact that the Director-General of WHO died after brain surgery just blows me away. What irony. There are so many people who deal with brain-related illnesses/problems each year.
I hope this does not sound insensitive at a moment of sadness to those who knew Lee Jong-wook personally...but I hope that his contributions are extended an additional measure, even to how he died. Will his brain-related death bring more attention to the randomness of brain illnesses?
Blood clots in the brain. Brain tumors. Brain cancer. Who is immune from any of this? Not even the person who was overseeing brain health on a worldwide basis -- not even he was safe from being taken by brain-related problems. Lee Jong-wook was active and rigorous only a few days ago. Now, Lee Jong-wook has passed away, all from something in the brain that did not go right. Is there something to do here other than grieve for him?
