Monday, 10:15 PM
High-Level Journal Summary: A day which progressed from negative to positive. It was just a slow transition from the yucky parts of life to some of the best parts of life, all within 12 hours.
A big part of this perspective came from stopping (all that I could) and focusing on the basics -- plenty of sleep, good food, and exercise. This opened the door for more human moments like burying a bird I found dead on a walking path. And then some of it was just luck, like hearing from Brain Tumor Twin Jill and learning that she has successfully started chemo.
A liberating transformation in a single day. Amen. And all while starting my 27th cycle of Temodar chemotherapy.
Countdowns:
1.) Day 1 of 28 in my 27th 5/23 Temodar chemotherapy cycle. I got another Comprehensive Metabolic Panel (CMP) today. Compared to my 10/28/07 CMP, my Calcium level is in the normal range. Yesterday, it was considered to be in the critically high range, but that now seems to be due to a sampling error, which sometimes happens. The bottom line is that all my numbers are fine for the time being.
2.) On 10/30/07, meet with Congressman Robert Aderholt on Capitol Hill. He serves on the House Appropriations Committee and wants to know more about the National Institutes of Health. I certainly have much information to share, no matter how he drills down for additional perspective.
2007 Seizure Activity:
1.) Last Simple Partial Seizure, or SPS, was today. At 5:55 PM, I was 30 minutes into a long walk when a 1-2 second light SPS rose in the left part of my brain. My thoughts on other subjects were completely stopped as this aura and SPS came and went. There is no mistake when this happens -- it is like sneezing. That is, you know when you have sneezed. There is zero doubt about whether or not it has happened.
2.) In 2007, I have had 72 SPS's in 302 days. This is an average of 1 SPS every 4.2 days.
Actual Journal: After going through a few upsetting situations today, I was able to center myself again as the day progressed. I slept for a solid 2.5 hours this afternoon, without setting my alarm. I just gave my body all the sleep that was needed. Then, I woke up, ate an organic apple, and went for a long walk as the sun set on a crisp autumn day.
Moving to a better place
During my walk, I found a robin that had died. It was right there, in the middle of the path. Who knows how long it had been there, but its feathers were still fluffy, making me think it died sometime today. Instead of walking past it, I stopped. I found two branches that helped me to lift this limp bird. I slowly took it into the woods at the side of the trail. I simply laid this robin down, face up. Having its head down in the dirt seemed disrespectful. Then, I got a whole bunch of leaves and sprinkled these leaves atop, as a gentle breeze blew away a few more of its feathers. It was as close to a funeral as I could give to this bird on the side of a heavily traveled bike path.
Sleep, exercise, a human gesture. All these things took me to a much healthier place than I was in this morning. Amen. I just slowly shed what I felt this morning and did things that reduced stress and brought the perspective I needed.
Brain Tumor Twin call
Shortly after my 1.5 hour walk, I was finishing dinner when a 917 area code popped up on my cell phone. I knew exactly who it was. Brain Tumor Twin Jill.
I knew that Jill was in Hawaii with her Mom. Jill's Mom had planned this trip before Jill got the news on 10/17/07 that her tumor had a few millimeters of enhancement and that Temodar chemotherapy needed to begin as soon as possible, in the recommendation of neuro-oncologist Dr. Howard Fine.
I have been thinking about Jill every day, wondering if she had begun chemo or not. But since she was in Hawaii, I could not quite call her at noon Eastern Time. I would have waken her at 6 AM in Hawaii. So, I just left my thoughts there, waiting until she returned from her family vacation.
Chemo or no chemo?
I was very relieved when Jill told me she was on Day 5 of her first chemo cycle. What a relief. A huge relief. I was happy to learn this news and I told Jill this directly. It spilled out of me quickly -- surprisingly so. I did not tell Jill what to do, leaving that decision to her. I guess I revealed my personal opinion with what I said this evening. Hard for me not to have such a positive opinion after all I have learned in the past two years while on Temodar chemotherapy.
In any case, Jill had all sorts of questions, and she just fired away for a while. It appears that her body has tolerated the initial round of chemo just fine. That is, she was not throwing up after taking her chemo in the morning. That is great news. From all I know, this means that Jill is not part of the 5% of all people whose bodies outright reject Temodar chemotherapy.
Jill's only comment was that she felt like she was "on a trip." Not a trip to Hawaii, but on a drug trip. That is when it paid to be in the 10/17/07 meeting with Dr. Fine and Jill. I reminded her what Dr. Fine had said. Her tumor recently enhanced into her right hippocampus, which is what was making her feel a little "spaced out." I do not know the anatomical reasons for this, but this was an exact and pointed comment by Dr. Fine.
Hippocampus
So, we bounced around the information that feeling spaced out is not because of medications. Rather, Dr. Fine said it is because of the location of the tumor. This is the kind of conversation that a caregiver can have with a patient. Four ears are better than two, basically. And my Mom was in that meeting, so we had six ears, not just two. All the better.
Even better news
As I type right now, some Latin jazz is playing on 89.3 FM in Washington, D.C. I also have an invitation to stay with Jill, her boyfriend, and her Mom in New York City when I go there for Brain Tumor Awareness Day on 11/11/07. (A reflecting sigh.) To think that Jill and I did not know each other a year ago...meeting at the 11/12/06 Brain Tumor Awareness Day.
A lot has happened in that time. We are both helping each other through this journey, without doubt. Plus, Jill is just cool. Flat out cool. No doubt about it. She brings out the musical wild side in me, which I appreciate so much since I am not playing my french horn at this time.
The point of this journal entry
The point of this journal entry? Good question. This is a more scattered journal entry than normal. I am aware of that. I suppose this journal shows my progression throughout the day, as I reflect upon it all. Today sort of went like this:
1.) Going through challenges this morning (which will someday be an important journal topic).
2.) Identifying the negative feelings I was having.
3.) Doing something about it (sleep, healthy eating, exercise).
4.) Feeling sorrow for that poor bird.
5.) Getting in better touch with what is most important in life.
6.) Hearing from a new and loved friend.
7.) Trying to help each other.
It was just a slow transition from the yucky parts of life to some of the best parts of life, all within 12 hours. Only by writing this online journal entry can I fully understand that this is the dynamic that slowly unfolded throughout the day.
How ultimately liberating.
