1 September 2006
Friday, 11:40 PM
High-Level Journal Summary: Personal reactions to sending out a mass form of communication regarding my current health status. While I have pretty human reactions to not communicating this information in a more personal way, there are things that come of it all that balance the equation. In particular, I was reminded today of 2 important things:
1.) The shared knowledge that is generated with such communication is invaluable.
2.) The "underground world of brain tumors" is larger and more stealthy than most would realize. For example, I have a friend from college who reads this website regularly, and her sister was just diagnosed with a brain tumor on 8/4/06.
In the end, the relative lack of personal touch in mass communication seems forgivable to me considering the increased awareness that comes of it all. That is how I can justify such activity to myself. Awareness is important, because brain tumors are more democratic than we would like to think.
Countdowns:
1.) Day 26 of 28 in my 11th 5/23 Temodar chemotherapy cycle.
2.) Bi-weekly hematology report on 9/3/06 to see how my blood levels are doing the day before starting cycle 12 of my chemo cycle.
3.) Monthly Inova Brain Cancer Support Group Meeting on 9/5/06.
4.) Bi-monthly Perfusion MRI at NIH on 9/15/06. Review of MRI with Dr. Howard Fine is scheduled on the same visit.
Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was 2 days ago.
2.) I have now had 40 SPS's in the past 253 days (since 12/22/05). This is an average of 1 every 6.3 days.
Actual Journal: Tropical Depression Ernesto was upon Northern Virginia today. So, when I went for my evening walk, I got absolutely soaked. It also meant that I had the entire trail to myself. In an hour of walking along Four Mile Run Trail, I only saw one other person – someone going for a jog. These are my favorite moments; when most everyone else is saying no, I like to say yes. Psychologically, it has an uplifting effect. It somehow tells me that I am doing everything in my ability to do the things I need to do to take on brain cancer. It leaves little room for doubt or second-guessing myself. That has an emotional power to it.
Communication
Today, a mass e-mail was sent to friends, family, other patients/caregivers -- even people I have yet to meet. This message gave an update regarding my health since 5/5/06. As well, I sent an announcement about the premiere of art by Rosemary Feit Covey based on my particular experience with brain cancer. (The party and exhibit will be held on 10/14/06 at the Torpedo Factory in Alexandria, Virginia.)
In any case, it is wonderful to be able to communicate this way. While it lacks the personal touch of one-on-one communication, it does create awareness.
Mixed reactions
Awareness aside, I have all sorts of mixed emotions and thoughts when such messages are sent on my behalf by Blue Water Media, the company that manages the 38 Lemon website. In no order, here are some of the things I think about whenever communication like this is sent:
1.) I am glad that the technology exists to maintain communication with people I love, even when in a mass-communication format.
2.) I feel a bit "slimy" that this communication is not one-on-one, even though I fully understand that this is not possible to do.
3.) I find myself really grateful when I learn that sharing my experience with other patients and caregivers has positive effect. After all, I think that the knowledge that has been accumulated on my behalf is somewhat wasted if only for me. Too much work has gone into building medical teams and deciding on treatments and learning things over time. Using all this knowledge within the brain cancer community is far better, in my estimation.
4.) I am self-conscious that I am most often the center of attention. I use this website to think out loud. I write to understand. I write to connect all the dots. This is the tool that works for me. That is a big part of why this website exists. It is an important part of my fulltime job as a brain cancer patient. It is how I "exercise my brain." However, it also means that my name is attached to almost everything. Do people think I am incredibly egotistical? I suppose that could/would be assumed. For myself, my perspective is that I write in more symbolic ways. I assume that if I have particular experiences and reactions, then many other patients/caregivers also have similar experiences. I assume that my voice is probably the voice of many.
5.) I am thankful for all the real support that I get. Emotionally and practically, this is very powerful.
6.) There are certain people with whom I cannot share all this information. For example, my Grandmother Welch and my Grandmother Miller passed away long before my diagnosis. I often wonder what it would be like to share this news with them. I wish I could give them more of the full story of the events in my life. They died without being able to see everything play out, and it leaves a mysterious sense of wonder.
7.) I think of long lost friends from grade school, high school, college, my early professional career. I have this real feeling of need to reach out to them, as well. Sometimes, I am prompted to do this out of need to heal old wounds I helped to create. Sometimes, I just miss them and wonder how we lost contact. Sometimes, I just reach out in full curiosity about how their life has gone since last being together. When messages like today are sent, I wonder what it would be like if their e-mail address were included. What would it prompt? What would our conversation be once our bond was reestablished?
8.) I am self-conscious and guilt-ridden when I am unable to quickly answer e-mail responses.
More important things
Beyond this active imagination, there are much more important things in play. I can think of a few things, right off the bat.
1.) Knowledge.
People respond and tell me things that I should know and who else I should talk with and what other treatments are in clinical trial. How can I possibly put a price on that? It is like expanding the Inova Brain Tumor Support Group to more of a national (and international) audience. That is powerful, because patients and caregivers don't have to be nearly as polite as doctors who are somewhat bound by decorum. Patients and caregivers call it like they see it and are less afraid to hurt the feelings of practitioners in the brain cancer community. (This makes the price of maintaining this website a bargain for me!)
2.) The need for awareness.
Each time, I learn more about the "underground world of brain tumors." After the message was sent today, I got an e-mail from a college friend at Virginia Tech, Ashley, who told me about her sister who was diagnosed with a colloid brain cyst tumor. I have photos of Ashley and me back in Blacksburg, VA and she has been so supportive of me during my brain cancer. Then -- all of a sudden -- WHAM! -- her very sister is diagnosed with a brain tumor on 8/4/06.
This sort of thing seems less and less uncommon to me. The only difference is that I am tapped into this network of brain tumor patients and caregivers, which is more vast than I ever knew or suspected prior to my diagnosis. There is more need than I realized, and with more communication/awareness, the more I understand that this is true.
Final thoughts
In the end, whatever hesitations I have about sending out a mass form of communication are hesitations with which I can live. Even if my motives are questioned, there are good things that happen as a result. There is more awareness, both for others and for me. As long as that happens, there is value for both the giver and the receiver. And if this is not desired, the delete key is only one stroke away.
I say the latter a bit in jest, because I hope that -- at the very least -- the democracy of brain cancer is a prompt for everyone to get an MRI at your next physical exam. That single thought is a great baseline of awareness regarding brain tumors.
