(The drumroll beat, that is!)
The verdict? Back in two more months with another perfusion MRI. This one wasn't bad, but it was confusing.
The good news was that the area of interest in January's MRI was found to be completely negative for perfusion. In other words, that spot is more consistent with scar tissue than with tumor.
The confusing news was that the radiologist noted high perfusion in another area. But when my doctor looked at that area on the scan, it was comparable to how that area looked a year ago. The only change was that part of it actually looks a little better now.
Nothing indicated an imminent threat or even a need for additional treatment right now, but there is still some question about what this all means. So another perfusion study is the best course of action, and I go in at the end of April.
Meanwhile, I have a new prescription for some medication that helps "squish" the red blood cells and reduce the scar tissue. And I have just enough good news to keep me going, balanced with just enough mystery to keep me on my toes. I'm blessed.
...And I promise I'm not doing this for blog ratings!
Tuesday, February 24, 2009
Saturday, February 21, 2009
Stuff that keeps me going
Six weeks are finally up. I had my picture re-takes in the MRI tube yesterday--this time with perfusion to see whether anything is acting like tumor progression.
After the first set of scans I had to wait in the tube while the radiologist looked at them to pinpoint the areas to focus on during the perfusion run. The wait was longer than expected because it was a busy day, and my scans had to wait their turn in line. The technician went overboard to make sure I was okay with this. Some patients, he said, were crying and worrying that their delays meant something bad was going on. I was fine, I assured him.
Tuesday is when I will meet with my doctor to find out how things look, and it still seems like an eternity away. I've had many people ask me how I can stand waiting that long to hear whether I have good news or game-changing news. Some have commented that it is barbaric to leave patients in suspense over something like this. And it kind of is. But it may be the way things have to be right now, so I just try not to think about the new films that will sit in my ever-expanding tote bag until Tuesday. And I'm handling the wait just fine.
I have the familiar feeling of being surrounded by the prayers of so many family members and friends. Even though I have no idea what to expect on Tuesday, I'm feeling very calm, with a constant picture in (what's left of) my mind of the many faithful people who have been praying for me. I know that each one of those prayers is heard.
My husband and I spent yesterday evening in the temple. It's a place where silly details like cancer are relegated to their proper place in the big picture of things. A place of peace and even more prayer.
I slept remarkably well last night, which is rare even during non-eventful seasons of my life. And I awakened this morning to an immune-boosting laugh, courtesy of my son.
He woke up early and came into our room. I peered at him and said, "Hey, Jake, why don't you make us some breakfast?" He wisely pointed out that he was not old enough to cook by himself. (A lesson he learned while trying to microwave oatmeal without any water when I was in his sister's room.)
"That's right," I replied. Never wanting to miss a vocabulary lesson, I continued with, "You may only cook in the kitchen with SUPERVISION. That means when an adult is helping you."
He gave me a perplexed look, and then said, "No, Mom. It means when you can see through things."
As in SUPER-vision. Like Superman.
I'm sure I laughed hard enough to add substantial time to my life.
He saved me again this afternoon, giving me a proud moment as he earned his green belt in karate. Those coaching moments before he went in for a grueling 90-minute physical challenge were priceless. So was watching him realize the accomplishment he worked so hard for. Gotta stay around for more of those moments.
My daughter helped, too. I handed her a clean pillowcase today and asked her to put it on her pillow. Having never done this before, she quickly became frustrated. "I can't do it, Mom," she wailed. It was another teaching moment about avoiding discouragement. As expected, she worked at it and finally figured it out. It's a seemingly small victory, but not for a three-year-old. Gotta stay around for more of those moments, too.
Faith and family. Prayer and laughter and precious moments with a karate belt and a pillowcase. A small sampling of the stuff that keeps me going until Tuesday's verdict...and beyond.
After the first set of scans I had to wait in the tube while the radiologist looked at them to pinpoint the areas to focus on during the perfusion run. The wait was longer than expected because it was a busy day, and my scans had to wait their turn in line. The technician went overboard to make sure I was okay with this. Some patients, he said, were crying and worrying that their delays meant something bad was going on. I was fine, I assured him.
Tuesday is when I will meet with my doctor to find out how things look, and it still seems like an eternity away. I've had many people ask me how I can stand waiting that long to hear whether I have good news or game-changing news. Some have commented that it is barbaric to leave patients in suspense over something like this. And it kind of is. But it may be the way things have to be right now, so I just try not to think about the new films that will sit in my ever-expanding tote bag until Tuesday. And I'm handling the wait just fine.
I have the familiar feeling of being surrounded by the prayers of so many family members and friends. Even though I have no idea what to expect on Tuesday, I'm feeling very calm, with a constant picture in (what's left of) my mind of the many faithful people who have been praying for me. I know that each one of those prayers is heard.
My husband and I spent yesterday evening in the temple. It's a place where silly details like cancer are relegated to their proper place in the big picture of things. A place of peace and even more prayer.
I slept remarkably well last night, which is rare even during non-eventful seasons of my life. And I awakened this morning to an immune-boosting laugh, courtesy of my son.
He woke up early and came into our room. I peered at him and said, "Hey, Jake, why don't you make us some breakfast?" He wisely pointed out that he was not old enough to cook by himself. (A lesson he learned while trying to microwave oatmeal without any water when I was in his sister's room.)
"That's right," I replied. Never wanting to miss a vocabulary lesson, I continued with, "You may only cook in the kitchen with SUPERVISION. That means when an adult is helping you."
He gave me a perplexed look, and then said, "No, Mom. It means when you can see through things."
As in SUPER-vision. Like Superman.
I'm sure I laughed hard enough to add substantial time to my life.
He saved me again this afternoon, giving me a proud moment as he earned his green belt in karate. Those coaching moments before he went in for a grueling 90-minute physical challenge were priceless. So was watching him realize the accomplishment he worked so hard for. Gotta stay around for more of those moments.
My daughter helped, too. I handed her a clean pillowcase today and asked her to put it on her pillow. Having never done this before, she quickly became frustrated. "I can't do it, Mom," she wailed. It was another teaching moment about avoiding discouragement. As expected, she worked at it and finally figured it out. It's a seemingly small victory, but not for a three-year-old. Gotta stay around for more of those moments, too.
Faith and family. Prayer and laughter and precious moments with a karate belt and a pillowcase. A small sampling of the stuff that keeps me going until Tuesday's verdict...and beyond.
Sunday, February 15, 2009
...and...THIRTY-EIGHT!
(...and three days!)
Time flies when you're having fun, and the twelfth of the month flew right past me! Another month of survival under my belt. Hopefully many more to come.
Time really does fly. Last night my husband and I went to a Valentine's dance that was 70's and 80's themed. We weren't shy -- we had fun recreating the 80's "look", from hair and makeup (we've got two more wigs in case my hair ever falls out, and it'll be forever before I get all the navy blue eyeliner, pink eyeshadow, and four pounds of mascara cleaned off) to pink shirts and pegged pants to accessories (Swatch, skinny tie, lace fingerless glove, cinch belt, and more shoulder pads than a football player).
It was fun to realize how much time had gone by since we were kids in high school who liked this kind of stuff. One blink later we're the same age our parents were back then.
It won't be long before another quarter century goes by. Who knows what it will bring. As long as we're having fun doing what means most to us, it won't matter.
Time flies when you're having fun, and the twelfth of the month flew right past me! Another month of survival under my belt. Hopefully many more to come.
Time really does fly. Last night my husband and I went to a Valentine's dance that was 70's and 80's themed. We weren't shy -- we had fun recreating the 80's "look", from hair and makeup (we've got two more wigs in case my hair ever falls out, and it'll be forever before I get all the navy blue eyeliner, pink eyeshadow, and four pounds of mascara cleaned off) to pink shirts and pegged pants to accessories (Swatch, skinny tie, lace fingerless glove, cinch belt, and more shoulder pads than a football player).
It was fun to realize how much time had gone by since we were kids in high school who liked this kind of stuff. One blink later we're the same age our parents were back then.
It won't be long before another quarter century goes by. Who knows what it will bring. As long as we're having fun doing what means most to us, it won't matter.
Thursday, February 12, 2009
I'm here so I was there
MRI is 8 days away. Results are 12 days away. I'll finally get to solve the mystery of last month's suspicious MRI.
Reeeeeeally trying not to think about it. (It's like the joke where you tell someone not to think about a green striped hippopotamus.)
"It is what it is." That's my mantra. I repeat that as I make everything a neuro test. I beat a friend at Scrabble. (Good test.) I navigated down a bumpy hill during a walk with my son. (Good test.) I walked into a room and forgot why I was there. (Bad test.) Looking back over an email, I noticed a typo. (Making typo = bad test. Noticing typo = good test.) Had a mild headache when allergies were at their peak. (Probably neutral, but who knows...) And so it goes on.
The good news is that I'm here, so I was there.
On Sunday I was there to see my two children singing with the children's chorus at church. My son had a firm grip on the hand of a cute little girl in his class. My daughter was one of the youngest up there -- but without a shy bone in her body when it was time to sing. (I'm looking forward to teaching her voice lessons when she's old enough.)
Speaking of not being shy, I was also there during the last two testimony meetings, when my daughter walked up to the microphone of her own accord and testified to the whole congregation that she knew that Jesus loved her.
Last month I was there to help my son do another science fair project (on the physics of a "perfect pitch" in baseball). When he didn't win a trophy like he did last year, I was there to teach him that Honorable Mention was a fine outcome, because the most important thing he took home from his effort was a major improvement in his pitching technique. He used science in a way that had practical usefulness to meet a challenge (the upcoming little league "kid pitch" season). I was there to see him be a good sport and congratulate his classmate who won.
I was there to attend my son's baptism preview meeting. This was a soggy-eyed moment. As soon as my husband and I were married long enough that we "should have" had a child this age, we were wistful as we watched other people's children reach this milestone of baptism and confirmation. We wondered if we would ever have the chance to see a child of our own reach this milestone.
As soon as we held Jacob for the first time we anticipated this moment, along with many other milestone moments yet to come. Enter cancer while Emma was an infant, and before Jacob turned five. The statistical odds of my surviving until Jacob turned eight were not good at that time. Seeing Emma turn eight was supposed to be statistically zero. I noted that wistful feeling return again. Would I get the chance to see my children reach these milestones without having to peek from heaven? I want to be there.
So there we were, attending a meeting for all the children turning eight and getting baptized and confirmed this year. I was teary through the whole thing. March 28 is his day. Being there is less of a far-fetched notion.
A couple weeks before that will be his birthday party. "Indiana Jake and the Great Birthday Crus-EIGHT" is the theme. Being there will be a lot of fun. So will helping him get involved in cub scouting.
I was there with Jacob last Saturday night when he achieved a goal that he had set in the first grade. He was an eager reader, and took on a challenge -- to read the Book of Mormon before he was baptized and confirmed. He read to us each night and I was there to help him with the words and answer his questions. I was there on Saturday when he read the last words and expressed his tender feelings about them. Another moment sponsored by Kleenex.
Now our daughter wants to do the same. However, she needs to learn to read first. But I was there with her as she took on her first reading challenge: Dr. Seuss' Hop on Pop. We got as far as "Up, Pup. Pup is up." But it's fun to be there with this child who is a learning sponge.
Her birthday is coming up in June. I've already started planning the party, which is one of those "if we ever have a girl..." ideas back when when having a daughter was a very remote possibility. Being there when she is old enough to enjoy this was also a remote possibility. But it's becoming less remote, so we're having fun anticipating this moment.
I'm so grateful to be here so that I could be there for these precious moments. And I'm grateful that there are more milestones ahead in both the near-term and long-term. It's always good to have something specific to live for.
(Plus it keeps my mind off that green-striped hippopotamus on the 20th and 24th!)
Reeeeeeally trying not to think about it. (It's like the joke where you tell someone not to think about a green striped hippopotamus.)
"It is what it is." That's my mantra. I repeat that as I make everything a neuro test. I beat a friend at Scrabble. (Good test.) I navigated down a bumpy hill during a walk with my son. (Good test.) I walked into a room and forgot why I was there. (Bad test.) Looking back over an email, I noticed a typo. (Making typo = bad test. Noticing typo = good test.) Had a mild headache when allergies were at their peak. (Probably neutral, but who knows...) And so it goes on.
The good news is that I'm here, so I was there.
On Sunday I was there to see my two children singing with the children's chorus at church. My son had a firm grip on the hand of a cute little girl in his class. My daughter was one of the youngest up there -- but without a shy bone in her body when it was time to sing. (I'm looking forward to teaching her voice lessons when she's old enough.)
Speaking of not being shy, I was also there during the last two testimony meetings, when my daughter walked up to the microphone of her own accord and testified to the whole congregation that she knew that Jesus loved her.
Last month I was there to help my son do another science fair project (on the physics of a "perfect pitch" in baseball). When he didn't win a trophy like he did last year, I was there to teach him that Honorable Mention was a fine outcome, because the most important thing he took home from his effort was a major improvement in his pitching technique. He used science in a way that had practical usefulness to meet a challenge (the upcoming little league "kid pitch" season). I was there to see him be a good sport and congratulate his classmate who won.
I was there to attend my son's baptism preview meeting. This was a soggy-eyed moment. As soon as my husband and I were married long enough that we "should have" had a child this age, we were wistful as we watched other people's children reach this milestone of baptism and confirmation. We wondered if we would ever have the chance to see a child of our own reach this milestone.
As soon as we held Jacob for the first time we anticipated this moment, along with many other milestone moments yet to come. Enter cancer while Emma was an infant, and before Jacob turned five. The statistical odds of my surviving until Jacob turned eight were not good at that time. Seeing Emma turn eight was supposed to be statistically zero. I noted that wistful feeling return again. Would I get the chance to see my children reach these milestones without having to peek from heaven? I want to be there.
So there we were, attending a meeting for all the children turning eight and getting baptized and confirmed this year. I was teary through the whole thing. March 28 is his day. Being there is less of a far-fetched notion.
A couple weeks before that will be his birthday party. "Indiana Jake and the Great Birthday Crus-EIGHT" is the theme. Being there will be a lot of fun. So will helping him get involved in cub scouting.
I was there with Jacob last Saturday night when he achieved a goal that he had set in the first grade. He was an eager reader, and took on a challenge -- to read the Book of Mormon before he was baptized and confirmed. He read to us each night and I was there to help him with the words and answer his questions. I was there on Saturday when he read the last words and expressed his tender feelings about them. Another moment sponsored by Kleenex.
Now our daughter wants to do the same. However, she needs to learn to read first. But I was there with her as she took on her first reading challenge: Dr. Seuss' Hop on Pop. We got as far as "Up, Pup. Pup is up." But it's fun to be there with this child who is a learning sponge.
Her birthday is coming up in June. I've already started planning the party, which is one of those "if we ever have a girl..." ideas back when when having a daughter was a very remote possibility. Being there when she is old enough to enjoy this was also a remote possibility. But it's becoming less remote, so we're having fun anticipating this moment.
I'm so grateful to be here so that I could be there for these precious moments. And I'm grateful that there are more milestones ahead in both the near-term and long-term. It's always good to have something specific to live for.
(Plus it keeps my mind off that green-striped hippopotamus on the 20th and 24th!)
Sunday, February 01, 2009
Cub Scouts will save my life?
I serve in many callings in church. I am a music chairperson, a choir director, and a teacher. Recently I was also asked to be a cubmaster.
Naturally I said yes, because:
1. My son will soon be entering cub scouts; and
2. I can do it, so why not?
I think as soon as I held my son for the first time I knew I would be involved in scouting. There's a reason why mothers also get an award when their son becomes an Eagle Scout.
Plus it's kinda cute to be involved in cub scouts. My husband and I always called each other "bear," and so naturally we loved having a "J"-cub (Jacob). We used to call him "the cub" when he was a baby. Soon he'll be a wolf cub.
Today after church I had a brief orientation meeting, and I learned something really cool. I was told that this is usually a long-term assignment, and I should plan on doing this for the next four or five years.
I'm happy to be doing anything above ground for the next four or five years! And if what I'm doing involves working with my son, I'm doubly blessed.
Naturally I said yes, because:
1. My son will soon be entering cub scouts; and
2. I can do it, so why not?
I think as soon as I held my son for the first time I knew I would be involved in scouting. There's a reason why mothers also get an award when their son becomes an Eagle Scout.
Plus it's kinda cute to be involved in cub scouts. My husband and I always called each other "bear," and so naturally we loved having a "J"-cub (Jacob). We used to call him "the cub" when he was a baby. Soon he'll be a wolf cub.
Today after church I had a brief orientation meeting, and I learned something really cool. I was told that this is usually a long-term assignment, and I should plan on doing this for the next four or five years.
I'm happy to be doing anything above ground for the next four or five years! And if what I'm doing involves working with my son, I'm doubly blessed.
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