31 August 2007
Friday, 11:55 PM
High-Level Journal Summary: Per the introduction in my 8/26/07 online journal entry, this is the fifth of eight caregiver journals. This one is from Erika, the daughter of my friend from the 1984 Garfield Cadets Drum & Bugle Corps, Jim Gardiner. She just turned 13 years old, and when we send e-mails, she goes as "Ms. E." and I go by "Mr. David."
It was on 10/27/05 that I got a message from Jim after not being in touch for over 20 years. From there, he and his family have embraced me and reached out in friendship in amazing ways -- even to the point of traveling to Virginia and taking me to see one of those Canadian hockey games.
The awareness that Jim has as a father is evident in how thoughtful his children are, as can be seen in Erika's caregiver journal. What is especially powerful is that brain tumors are the #1 killer of children & young adults under age 20. As such, Erika's caregiver perspective is all the more impressive and important.
All this even led to a message from Erika on 1/10/07 when she said, "...instead of becoming a music therapist I'm going to become a Cancer Researcher. This is because I know many people who have fought cancer, have cancer and who have died from cancer, I'm going to help find a cure for cancer!"
Countdowns:
1.) Day 26 of 28 in my 24th 5/23 Temodar chemotherapy cycle.
2.) Bi-weekly hematology report on 9/2/07 to see how my blood levels are doing.
2007 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was today. This is now the 7th day in a row where I have had at least 1 SPS. Today, I had a total of 4 SPS's. Ugh. Here is the sequence of my seizures today:
• 1:30 PM -- 1 second light SPS while in travel. It was a what I also call an "aura." Just a brief flash in my head that comes and goes in a flash. No Ativan emergency anti-seizure medication was taken.
• 2:00 PM -- Another 1 second light SPS while in travel. No Ativan taken.
• 2:30 PM -- 1 second medium SPS while in travel. At this point, 0.5 mg of Ativan was taken to help stop this rolling series of SPS's. I learned from Dr. Amy Stone on 8/27/07 that there is a cumulative effect from having these "rolling" SPS's. (More details on this in a future online journal entry.)
• 7:00 PM -- 1 second light SPS while writing in my journal at Starbucks in a very peaceful environment. I was not as worried this time, simply because I had gotten 3.5 hours of great sleep since my last SPS at 2:30 PM. I was on the right track now. No Ativan was taken.
Seven days in a row with at least one SPS. Wow. An entire week of SPS activity. While I did insist on visiting my friends over the last several days, my decision to cut this trip short was a good one. I was listening to what my body was telling me to do. It only reinforces my decision to cancel four out-of-town trips that had slowly built up in September and October. (See 8/24/07 online journal entry.)
2.) In 2007, I have had 56 SPS's in 243 days. This is an average of 1 SPS every 4.3 days. This is a relatively large drop from the 1 SPS every 7.0 days that I have known for much of 2006 and 2007. It has all happened in the month of August, when I have made two trips. At this point, I now directly correlate the stress of travel and seizures. As such, I will base my future travel decisions on this valuable, hard-won information.
Caregiver Journal:
How life has changed knowing someone close has brain cancer
Life has been changed for me in positive and negative ways, but even the negative things always become positive because of the reassurance of the 38 Lemon daily journals and my positive views. I have pretty much opened my eyes to a whole new world that I never knew existed - and even now I know that I will stay aware.
My life has been changed in one major positive way, which is spreading awareness. For example I did a project on cancer last year that spread awareness to my class and my teacher. That made a difference to me because I know that some people listened to the most important parts, even if they didn't choose to hear all that I was expressing.
As well, I can now go to school and when people talk about their grandparents dying of a brain tumour I can say to myself something like "That means that the tumour was malignant" or something along those lines.
Once I even laughed at my science teacher because she knew so little about cancer (and how cancer affected cells) when she was teaching us about cells. But I never said anything to her until close to the end of the school year when I showed her my cancer project. (See 9/9/06 online journal entry to read her cancer project.) She was amazed: my awareness continues to spread.
Some days reading the daily journals I call my self a nerd, because I understand almost everything Mr. David is saying, which is something I wouldn't do in another circumstance.
Knowing that at any moment of any day something bad could happen, I guess I have become partially paranoid because of that. But I have faith that nothing bad will happen because of the support being given to Mr. David and that he will fight the battle until he has won.
-Erika
