I love rollercoasters, but those are off-limits now that I have a hole in my brain. Yet I rode a big one today at my doctor's office, and it wasn't nearly as fun as the Mr. Freeze ride at Six Flags.
Today was MRI day; my second perfusion study since January's questionable results. I enjoyed two years of consistently good MRI results, but I have had a constant drumroll going for the past four months.
After a long wait my doctor came in to discuss concerns that remained yet unresolved. One area looked enhanced, and a different area had high perfusion, according to the report. She considered just putting me back on some chemotherapy, and then decided instead to do a PET scan in two weeks. She would bring everything before "the tumor board" and do a review. She started talking about the possibility of surgery, because the area of concern was most definitely operable. I still felt calmed and comforted by my own faith and that of many others, but it was nonetheless overwhelming and difficult to contemplate. PET scan. More surgery. More chemotherapy. More drumroll.
Soon afterward I was with the office staff, trying to schedule the PET scan and listening to the chaos involved with that process. I went into swan mode, looking nice and graceful above the surface while kicking madly beneath the surface.
As I was getting ready to leave, my doctor emerged from her office after speaking directly with the radiologist on the phone. Some information was clarified, and now there was a solid verdict: "negative/low perfusion, consistent with treatment effect." (Translation: What we're seeing is probably radiation damage, not tumor.) Cancel PET scan. Come back in three months for my next MRI. We'll do a perfusion study again, but things look okay for now.
I'm allowed to get off the rollercoaster for a while!
Tuesday, April 28, 2009
Sunday, April 26, 2009
What they never told me about GBM
(I bet they never told you either. So I will do it.)
40 months after GBM diagnosis, it is not only possible to be alive, but it is also possible to win a trophy in a karate competition.
No one ever told me that, but they didn't have to. The conventional wisdom about GBM usually just falls on my one deaf ear.
Our family traveled to Houston for the USSD tournament on Saturday. My husband won two first-place trophies for senior blue belt kata (forms) and sparring, and my son won two second-place trophies for pee-wee green belt kata and sparring. My daughter did not compete, but won the hearts of many as she cheered us on in her brother's old uniform. And I won third place in the senior brown/black belt kata competition. The small matter of the hole in my gray matter kept me from entering the sparring competition.
It was a great experience. With Tuesday's MRI growing near, my competition form (Shaolin Kempo #5 Kata, to be exact) was a reassuring test of memory, balance, coordination, and neuromuscular strength. If something is amiss, at least I am asymptomatic for now.
But most importantly, it was another great opportunity to make some fun memories together as a family.
And besides, no one said I couldn't do it...
40 months after GBM diagnosis, it is not only possible to be alive, but it is also possible to win a trophy in a karate competition.
No one ever told me that, but they didn't have to. The conventional wisdom about GBM usually just falls on my one deaf ear.
Our family traveled to Houston for the USSD tournament on Saturday. My husband won two first-place trophies for senior blue belt kata (forms) and sparring, and my son won two second-place trophies for pee-wee green belt kata and sparring. My daughter did not compete, but won the hearts of many as she cheered us on in her brother's old uniform. And I won third place in the senior brown/black belt kata competition. The small matter of the hole in my gray matter kept me from entering the sparring competition.
It was a great experience. With Tuesday's MRI growing near, my competition form (Shaolin Kempo #5 Kata, to be exact) was a reassuring test of memory, balance, coordination, and neuromuscular strength. If something is amiss, at least I am asymptomatic for now.
But most importantly, it was another great opportunity to make some fun memories together as a family.
And besides, no one said I couldn't do it...
The Mother's Pin
Thursday was Bobcat day in our family. My son earned his Bobcat badge in Cub Scouts, and we had the badge ceremony at Thursday's pack meeting. Following tradition, my husband flipped Jacob upside down so that I could pin his badge on upside-down (it's turned around after he does a good deed). And then Jacob pinned a mother's pin on me.
This is another set of milestones placed before me, as mothers receive a pin each time their son advances in rank throughout the scouting program. Surely glioblastoma is no match for a mom who is determined to keep receiving mother's pins until her son becomes an Eagle Scout.
Monday, April 20, 2009
The Parable of the Easter Candy
In my last post I promised to include this in my next post, not realizing that it would be so long after Easter. So here it is:
Our children quickly learned that there is a candy jar in the bishop's office, so we always know where to find them after church.
On Easter morning before church Jacob and Emma got to see their baskets filled with candy and other gifts. They also saw a few of the candy-filled eggs that were hiding in the living room, and the bowls of jellybeans that were set out for our family dinner guests later in the day. We reminded the kids that the candy was for later, and they handled that with admirable patience.
After church they headed for the bishop's office. Jacob ran into his dad on the way there, and asked if it was okay to get a piece of candy. Jared made him a deal. He reminded Jacob that we already had a lot of candy at home, and said that Jacob could choose to have one piece of the bishop's candy - BUT - it would cost him all of the Easter candy that we have at home. Suddenly Jacob was happy to turn around and head for the car instead.
It was a cute Jacob story, but we saw the obvious life parallel of choosing between short-term and the long-term opportunities. While the cancer glasses give an enhanced eternal perspective, any adversity can create its own temporal distractions (such as fear) that can be costly relative to the opportunities before us. Part of 2nd Corinthians, chapter 4 comes to mind:
"We are troubled on every side, yet not distressed; we are perplexed, but not in despair; persecuted, but not forsaken; cast down, but not destroyed; always bearing about in the body the dying of the Lord Jesus, that the life also of Jesus might be made manifest in our body...For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory; while we look not at the things which are seen, but at the things which are not seen: for the things which are seen are temporal; but the things which are not seen are eternal."
Our children quickly learned that there is a candy jar in the bishop's office, so we always know where to find them after church.
On Easter morning before church Jacob and Emma got to see their baskets filled with candy and other gifts. They also saw a few of the candy-filled eggs that were hiding in the living room, and the bowls of jellybeans that were set out for our family dinner guests later in the day. We reminded the kids that the candy was for later, and they handled that with admirable patience.
After church they headed for the bishop's office. Jacob ran into his dad on the way there, and asked if it was okay to get a piece of candy. Jared made him a deal. He reminded Jacob that we already had a lot of candy at home, and said that Jacob could choose to have one piece of the bishop's candy - BUT - it would cost him all of the Easter candy that we have at home. Suddenly Jacob was happy to turn around and head for the car instead.
It was a cute Jacob story, but we saw the obvious life parallel of choosing between short-term and the long-term opportunities. While the cancer glasses give an enhanced eternal perspective, any adversity can create its own temporal distractions (such as fear) that can be costly relative to the opportunities before us. Part of 2nd Corinthians, chapter 4 comes to mind:
"We are troubled on every side, yet not distressed; we are perplexed, but not in despair; persecuted, but not forsaken; cast down, but not destroyed; always bearing about in the body the dying of the Lord Jesus, that the life also of Jesus might be made manifest in our body...For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory; while we look not at the things which are seen, but at the things which are not seen: for the things which are seen are temporal; but the things which are not seen are eternal."
Sunday, April 12, 2009
...and FORTY!
Forty months of survival today. Forty months, when fourteen was considered optomistic.
How fitting that this milestone coincides with Easter, which is a day that is all about life.
"For God so loved the world that he gave his Only Begotten Son, that whoso believeth in him should not perish but have everlasting life."
Not only was I alive, but I was singing again with one ear and half of a right brain. I led our choir through five songs, and I sang "Day of Tears" by Kenneth Cope, from Women at the Well. For those who are not familiar with the song, a little sample of a whole-brained/two-eared person singing it is here.
We also discovered the parable of the Easter candy, which is something I'll have to share in my next post. So stay tuned...
How fitting that this milestone coincides with Easter, which is a day that is all about life.
"For God so loved the world that he gave his Only Begotten Son, that whoso believeth in him should not perish but have everlasting life."
Not only was I alive, but I was singing again with one ear and half of a right brain. I led our choir through five songs, and I sang "Day of Tears" by Kenneth Cope, from Women at the Well. For those who are not familiar with the song, a little sample of a whole-brained/two-eared person singing it is here.
We also discovered the parable of the Easter candy, which is something I'll have to share in my next post. So stay tuned...
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