After a few "blast" emails to family and friends, this blog was born on November 21, 2005. This is a happy belated blog birthday! Going back and reviewing those first posts has been an interesting experience.
It was four years ago today that I was going in for my second MRI -- the one with VECTOR VISION! I had no idea back then how my life was going to change.
My mom likes to tell my brothers and me that some of the things you worry about will never happen, and the rest will never be as bad as you think, and she's right. However, at first, I thought I had found the exception. I was naive enough to think at first that as long as my tumor was operable, all would be fine if I could just make it through surgery. So the news that this tumor was cancerous in a really bad way was the realization of the worst possible scenario.
However, four years and many words later, Mom has been proven right again. On this day of Thanksgiving, I have more to be grateful for than I did in Thanksgiving 2005. And while glioblastoma was never on my wish list, there is no lack of sincerity in my gratitude today for how the experience has blessed me.
Thursday, November 26, 2009
Friday, November 20, 2009
Messiah 2009!
I've got half a mind to sing again!
December 20, 2009 (two shows)
Artisan Center Theater
418 E Pipeline Rd
Hurst, TX
(817) 284-1200
Free admission, reservations required
Audience is invited to sing along!
December 20, 2009 (two shows)
Artisan Center Theater
418 E Pipeline Rd
Hurst, TX
(817) 284-1200
Free admission, reservations required
Audience is invited to sing along!
Thursday, November 12, 2009
...and...FORTY-SEVEN!
Another month of survival is safely (and gratefully) in the can!
These milestones are always a time for reflection: Was I a good steward with the time I've been given? What have I done in exchange for another month of life? I'm very grateful for each day, and hope that I use it well.
These milestones are always a time for reflection: Was I a good steward with the time I've been given? What have I done in exchange for another month of life? I'm very grateful for each day, and hope that I use it well.
Monday, November 09, 2009
"Thankful Fours"
Last Saturday was a day to be thankful "four":
On Saturday, FOUR Mighty Oakes participated with thousands of others in the FOURTH ANNUAL Dallas-Ft.Worth Brain Tumor Walk, benefiting the National Brain Tumor Society. We were one of more than seventy members on my doctor's team, "Fink's Fighters." (That's Dr. Fink on the left, celebrating with us after we crossed the finish line.) When we moved to the Dallas area FOURteen years ago, I had no idea that I would later be so glad to live in an area with such a skilled neuro-oncologist who was so actively involved in research.
FOUR YEARS ago, when they were holding their first walk in D/FW, I was training for a 5K run. I was having seizures (just didn't know it yet) and would later find out that I had a grade FOUR brain tumor. It changed my life for the better.
FOUR MONTHS ago, I earned my black belt in karate. I was alive and kicking long past my projected expiration date.
FOUR DAYS prior to this weekend's walk, I had ear surgery. I was on my surgeon's orders not to run this weekend, but I was able to walk the 5K course, and I didn't lose my balance and fall into the Trinity River!
This was a good way to celebrate the beginning of my FOURTH year of good MRI scans!
Wednesday, November 04, 2009
Surgery was a Ten
Yesterday's tympanoplasty was a "10," both literally and figuratively. It was the tenth surgery in my 42 years of medical history, and it scored a perfect "10" with me. My surgeon (Dr. Robert Owens), the hospital (Baylor UMC Dallas), and all of the staff were great, and the outcome was much easier than expected.
The only thing that wasn't a "10" was my pain scale, and that's a good thing! I was expecting lots of pain and balance problems, but so far I've been walking straight and managing with an occasional ice pack and over-the-counter Tylenol tablet. I'm fuzzy from the anesthesia and pretty tired from the steroids that kept the swelling down (and me up all night), but I can't complain. It's just a reminder that I have survived GBM long enough to start dealing with some of the long-term effects of treatment!
The only thing that wasn't a "10" was my pain scale, and that's a good thing! I was expecting lots of pain and balance problems, but so far I've been walking straight and managing with an occasional ice pack and over-the-counter Tylenol tablet. I'm fuzzy from the anesthesia and pretty tired from the steroids that kept the swelling down (and me up all night), but I can't complain. It's just a reminder that I have survived GBM long enough to start dealing with some of the long-term effects of treatment!
Monday, November 02, 2009
Stumbling Blocks or Building Blocks
Only God can make a real eardrum, but my surgeon is going to try and make a reasonable facsimile tomorrow. I'm anticipating a painful and wobbly recovery, but hey -- this isn't exactly brain surgery! And I'm looking forward to having an eardrum again. I thought I had stopped taking things for granted, until I realized how much I missed having an eardrum, and how I never really gave it a thought until it wasn't there for me.
(So for those of you with eardrums, give a prayer of thanks!!!)
Something else to be thankful for today -- I wrote another article that was published this month. It's called "Stumbling Blocks or Building Blocks," and it's a short capture of what I've learned about the challenges we all face in life. You can read it online at desertsaintsmagazine.com. (The article is on page 20.)
(So for those of you with eardrums, give a prayer of thanks!!!)
Something else to be thankful for today -- I wrote another article that was published this month. It's called "Stumbling Blocks or Building Blocks," and it's a short capture of what I've learned about the challenges we all face in life. You can read it online at desertsaintsmagazine.com. (The article is on page 20.)
Wednesday, October 28, 2009
I'm Walking!
I'll be four days post-op (tympanoplasty) but as long as I keep it to a walk, I'll be joining Dr. Fink's team (Fink's Fighters) at the 4th Annual Dallas/Ft. Worth Brain Tumor Walk on November 7!
This event benefits the National Brain Tumor Society (NBTS), which funds vital brain tumor research across North America. As the benefactor of this research, I am happy to support this cause. My husband, son, and daughter are joining me in this, and we each have a $250 fundraising goal so that the "Mighty Oakes" can contribute $1000 to NBTS.
This means the four of us are each looking for 10 people willing to donate $25, or 25 people willing to donate $10. (See, I can still do math!) Donations can be made online using the links below:
My fundraising page:
Dallas-Ft. Worth Brain Tumor Walk:
Jared's fundraising page:
Dallas-Ft. Worth Brain Tumor Walk:
Jacob's fundraising page:
Dallas-Ft. Worth Brain Tumor Walk:
Emma's fundraising page:
Dallas-Ft. Worth Brain Tumor Walk:
If you're in the Dallas/Ft. Worth area and would like to walk on the Fink's Fighters team, go to Dallas-Ft. Worth Brain Tumor Walk: and click on the "join team" link.
Any and all support is very much appreciated!
This event benefits the National Brain Tumor Society (NBTS), which funds vital brain tumor research across North America. As the benefactor of this research, I am happy to support this cause. My husband, son, and daughter are joining me in this, and we each have a $250 fundraising goal so that the "Mighty Oakes" can contribute $1000 to NBTS.
This means the four of us are each looking for 10 people willing to donate $25, or 25 people willing to donate $10. (See, I can still do math!) Donations can be made online using the links below:
My fundraising page:
Dallas-Ft. Worth Brain Tumor Walk:
Jared's fundraising page:
Dallas-Ft. Worth Brain Tumor Walk:
Jacob's fundraising page:
Dallas-Ft. Worth Brain Tumor Walk:
Emma's fundraising page:
Dallas-Ft. Worth Brain Tumor Walk:
If you're in the Dallas/Ft. Worth area and would like to walk on the Fink's Fighters team, go to Dallas-Ft. Worth Brain Tumor Walk: and click on the "join team" link.
Any and all support is very much appreciated!
Tuesday, October 27, 2009
Clear Sky and Clear Head
The rainy weather lifted today, and along with the cleared skies came a clear verdict on the MRI. "Stable, and low perfusion, consistent with treatment effect." (Translation: still only seeing scar tissue from the radiation.)
As I was heading down to the medical center today, a phrase from a favorite hymn kept going through (what's left of) my mind: "Thy hope, thy confidence, let nothing shake..."
As I was heading down to the medical center today, a phrase from a favorite hymn kept going through (what's left of) my mind: "Thy hope, thy confidence, let nothing shake..."
Sunday, October 25, 2009
Not On My Mind...(I hope)
Yes, I'm less than 48 hours away from another MRI verdict. I've learned long ago that there are a million reasons not to be anxious about this. And I've been floating along on my prayer cushion, which makes things a lot easier.
Even so, as the day approaches I still find myself fending off the discouraging little thoughts that creep into (what's left of) my mind.
Today started off as a wonderful day. My children spoke and sang in their Primary program today at church, and I was also able to hear good news from friends whose long-awaited hopes for a child may finally be realized soon.
Later I learned the sad news of the passing of a young man who also had GBM. He had long outlived his prognosis and was able to achieve some personal goals in his life, and I guess it was finally his turn to be called home from whence he came. I am grieving for his mother, and I am also having to remind myself that his passing is no reason for me to be discouraged.
When I came home from church I started to remove my jewelry and noticed that I had lost one of my earrings. It was a minor "aw shucks" moment until I took off the other earring and put it in my jewelry box. That's when I noticed the other earring sitting in the box, and I realized that I hadn't lost an earring -- I only put one on this morning. I rolled my eyes and began removing the rest of my jewelry and noticed that I was wearing two LIVESTRONG wristbands instead of one. These were new little "oops" moments. My "baseline" friends (those with intact brains) assure me that this kind of stuff is perfectly normal for someone who is forty-something with small children.
(100/93/86/79/72/65/58/51/44/37/30/23/16/9/2 -- I can still count backwards from 100 by sevens without any problem. Just checking.)
And of course, I started noticing a minor headache this evening. It might have something to do with the high pollen count that's giving everyone else a minor headache, and it might also have something to do with the big hole in my eardrum that feels every change in barometric pressure (and there's a storm approaching). But these are all things that get nothing more than a shrug when I'm not less than 48 hours away from the MRI tube.
After years of experience with both good MRI days and bad MRI days, I think it's silly to have any thoughts like this making their way through the screen door of (what's left of) my mind. But here they come, and thankfully they are small and easy to swat away. I just have to be vigilant and keep swatting, because they like to come buzzing back.
This is where I notice how nice the prayer cushion feels. (Thank you thank you!) And this is where I remind myself that discouragement is never an inspired feeling, and never belongs on (what's left of) my mind.
Even so, as the day approaches I still find myself fending off the discouraging little thoughts that creep into (what's left of) my mind.
Today started off as a wonderful day. My children spoke and sang in their Primary program today at church, and I was also able to hear good news from friends whose long-awaited hopes for a child may finally be realized soon.
Later I learned the sad news of the passing of a young man who also had GBM. He had long outlived his prognosis and was able to achieve some personal goals in his life, and I guess it was finally his turn to be called home from whence he came. I am grieving for his mother, and I am also having to remind myself that his passing is no reason for me to be discouraged.
When I came home from church I started to remove my jewelry and noticed that I had lost one of my earrings. It was a minor "aw shucks" moment until I took off the other earring and put it in my jewelry box. That's when I noticed the other earring sitting in the box, and I realized that I hadn't lost an earring -- I only put one on this morning. I rolled my eyes and began removing the rest of my jewelry and noticed that I was wearing two LIVESTRONG wristbands instead of one. These were new little "oops" moments. My "baseline" friends (those with intact brains) assure me that this kind of stuff is perfectly normal for someone who is forty-something with small children.
(100/93/86/79/72/65/58/51/44/37/30/23/16/9/2 -- I can still count backwards from 100 by sevens without any problem. Just checking.)
And of course, I started noticing a minor headache this evening. It might have something to do with the high pollen count that's giving everyone else a minor headache, and it might also have something to do with the big hole in my eardrum that feels every change in barometric pressure (and there's a storm approaching). But these are all things that get nothing more than a shrug when I'm not less than 48 hours away from the MRI tube.
After years of experience with both good MRI days and bad MRI days, I think it's silly to have any thoughts like this making their way through the screen door of (what's left of) my mind. But here they come, and thankfully they are small and easy to swat away. I just have to be vigilant and keep swatting, because they like to come buzzing back.
This is where I notice how nice the prayer cushion feels. (Thank you thank you!) And this is where I remind myself that discouragement is never an inspired feeling, and never belongs on (what's left of) my mind.
Friday, October 23, 2009
Testing...testing...
We have a series of tests going on this weekend. Today my son has his usual lineup of spelling and math tests at school. This evening my husband is testing for his second-degree brown belt, and tomorrow my daughter is having her first karate belt test. On Tuesday I go in for my MRI test.
These are all very different kinds of tests, but they all have a couple of things in common: 1) they reflect what exists at the time of the test, and 2) they provide opportunities to learn something more.
This series of tests is very short-term. In the long-term picture, we are always undergoing a series of tests called "life."
Sheri Dew said, "For indeed, this life is a test. It is only a test—-meaning, that's all it is. Nothing more, but nothing less. It is a test of many things—-of our convictions and priorities, our faith and our faithfulness, our patience and our resilience, and in the end, our ultimate desires."
The experiences we go through in life do test us in these ways. Each new experience gives us the opportunity to demonstrate what already exists within us, and it also provides an opportunity to learn more.
I am grateful for the comforting knowledge that life is an open-book test when we know who we are, why we are here, and where to turn for help any time we need it.
These are all very different kinds of tests, but they all have a couple of things in common: 1) they reflect what exists at the time of the test, and 2) they provide opportunities to learn something more.
This series of tests is very short-term. In the long-term picture, we are always undergoing a series of tests called "life."
Sheri Dew said, "For indeed, this life is a test. It is only a test—-meaning, that's all it is. Nothing more, but nothing less. It is a test of many things—-of our convictions and priorities, our faith and our faithfulness, our patience and our resilience, and in the end, our ultimate desires."
The experiences we go through in life do test us in these ways. Each new experience gives us the opportunity to demonstrate what already exists within us, and it also provides an opportunity to learn more.
I am grateful for the comforting knowledge that life is an open-book test when we know who we are, why we are here, and where to turn for help any time we need it.
Monday, October 19, 2009
Being remembered
Yesterday was a tender mercy moment, made possible with the help of my youngest brother.
Twenty years ago, shortly after moving to Texas, I decided to take a sign language class. My husband was taking night classes, and I already had my degree, but I had worked in a special education school in Utah and gained interest in sign language.
Shortly after the semester ended, a family moved into our congregation. They had a son about the same age as my son is now, and he was deaf. My husband was his primary class teacher, and I was asked to be his interpreter so that his mother could attend the adult classes.
This became one of those experiences where I felt like I was the one being ministered, when it should have been the other way around. We came to love this family, and I especially appreciated this child's patience when it became obvious that he could read lips better than I could sign. I remember him rolling his eyes and correcting me (or filling in for me when I hesitated). This was long before we had children of our own, so it was a time when we especially enjoyed opportunities to play even a small role in the life of a child.
After a few years, the family moved away and we regrettably lost touch. Not long ago (maybe because of my own hearing loss) I was thinking about this person and whether there was any way to see how he was doing. My youngest brother is the same age, and they were both in our class. He heard me wonder aloud whatever became of our young friend, and somehow worked his magic to find him and reunite us on Facebook last night! We spent a little time chatting online, which is a lot easier than talking via sign language -- at least for me!)
I was happy to learn that he is doing well, he served a mission for our church, and he has a good career. I was pleasantly surprised to learn that he remembered my husband and me, even though it has been nearly two decades since we've seen him.
When I was first diagnosed with cancer (wow -- coming up on FOUR years ago!) one of my initial worries was whether I would live long enough for my children to remember me. This little reunion last night was a way to remember a happy time in our young married life. It also later dawned on me that if my brief and trivial stint as a bumbling sign language interpreter was memorable to an eight-year-old child, perhaps I don't need to wonder if my eight-year-old son will still remember me.
(NOT that I plan to go anywhere anytime soon!)
Twenty years ago, shortly after moving to Texas, I decided to take a sign language class. My husband was taking night classes, and I already had my degree, but I had worked in a special education school in Utah and gained interest in sign language.
Shortly after the semester ended, a family moved into our congregation. They had a son about the same age as my son is now, and he was deaf. My husband was his primary class teacher, and I was asked to be his interpreter so that his mother could attend the adult classes.
This became one of those experiences where I felt like I was the one being ministered, when it should have been the other way around. We came to love this family, and I especially appreciated this child's patience when it became obvious that he could read lips better than I could sign. I remember him rolling his eyes and correcting me (or filling in for me when I hesitated). This was long before we had children of our own, so it was a time when we especially enjoyed opportunities to play even a small role in the life of a child.
After a few years, the family moved away and we regrettably lost touch. Not long ago (maybe because of my own hearing loss) I was thinking about this person and whether there was any way to see how he was doing. My youngest brother is the same age, and they were both in our class. He heard me wonder aloud whatever became of our young friend, and somehow worked his magic to find him and reunite us on Facebook last night! We spent a little time chatting online, which is a lot easier than talking via sign language -- at least for me!)
I was happy to learn that he is doing well, he served a mission for our church, and he has a good career. I was pleasantly surprised to learn that he remembered my husband and me, even though it has been nearly two decades since we've seen him.
When I was first diagnosed with cancer (wow -- coming up on FOUR years ago!) one of my initial worries was whether I would live long enough for my children to remember me. This little reunion last night was a way to remember a happy time in our young married life. It also later dawned on me that if my brief and trivial stint as a bumbling sign language interpreter was memorable to an eight-year-old child, perhaps I don't need to wonder if my eight-year-old son will still remember me.
(NOT that I plan to go anywhere anytime soon!)
Tuesday, October 13, 2009
...and...FORTY-SIX!
(and one day!)
Ferris Bueller was right: "Life moves pretty fast. If you don't stop and look around once in a while, you could miss it." And so was John Lennon: "Life is what happens to you while you're busy making other plans."
My son had surgery on his broken wrist last week. He's doing great, and he's home with me this week with a huge pile of make-up work from school. My husband had a birthday on Sunday, and we'll continue celebrating with a trip to the state fair and his favorite store (Dallas Mustang) this weekend. Between birthday-ing and playing school, it took me a while before I finally noticed that another month of survival has passed.
Not only that, but another YEAR has passed since my husband's birthday in 2006, when I received the unfortunately-timed news about tumor progression and had to begin experimental chemotherapy. That was the last time I'd received such a report, and I'm hoping it will continue to be the last time. (Especially since my next MRI is in two weeks.)
Ferris Bueller was right: "Life moves pretty fast. If you don't stop and look around once in a while, you could miss it." And so was John Lennon: "Life is what happens to you while you're busy making other plans."
My son had surgery on his broken wrist last week. He's doing great, and he's home with me this week with a huge pile of make-up work from school. My husband had a birthday on Sunday, and we'll continue celebrating with a trip to the state fair and his favorite store (Dallas Mustang) this weekend. Between birthday-ing and playing school, it took me a while before I finally noticed that another month of survival has passed.
Not only that, but another YEAR has passed since my husband's birthday in 2006, when I received the unfortunately-timed news about tumor progression and had to begin experimental chemotherapy. That was the last time I'd received such a report, and I'm hoping it will continue to be the last time. (Especially since my next MRI is in two weeks.)
Sunday, September 20, 2009
Lessons from Jacob
I was in the hospital last night -- this time with my son, who had been running with friends and tripped and landed on his wrist. It has a nice, clean break and is expected to heal quickly. The initial trauma and pain is behind him, and he is dealing with having his right hand in a fiberglass splint until he gets a cast sometime in the next few days.
He's managed to get through this in relatively good spirits, especially as my husband was taking him out for ice cream on the way home from the hospital, and as I picked up balloons and gum and small presents along with his pain medication. Something about being excused indefinitely from washing the dishes helped, too.
But today I noticed a special spirit about Jacob in the face of this challenge. As we were getting ready for church today, he started making a mental list of things that he can do with his left hand. Some were easy. ("I can get a straw out of the drawer for my drink." "I can still open Mom's car door.") Some were more challenging -- like dressing and writing -- but he was determined to tackle those as independently as possible. By the time we got to church he was sharply dressed and groomed, and he had neatly written his name and drew a self-portait with his left hand.
This won't always be an easy situation for him to deal with, and perhaps when the novelty and attention wear off he may get frustrated and tired. But today my son taught us all a great lesson as he chose to focus entirely on his abilities and his possibilities rather than bemoaning his disabilities.
He's managed to get through this in relatively good spirits, especially as my husband was taking him out for ice cream on the way home from the hospital, and as I picked up balloons and gum and small presents along with his pain medication. Something about being excused indefinitely from washing the dishes helped, too.
But today I noticed a special spirit about Jacob in the face of this challenge. As we were getting ready for church today, he started making a mental list of things that he can do with his left hand. Some were easy. ("I can get a straw out of the drawer for my drink." "I can still open Mom's car door.") Some were more challenging -- like dressing and writing -- but he was determined to tackle those as independently as possible. By the time we got to church he was sharply dressed and groomed, and he had neatly written his name and drew a self-portait with his left hand.
This won't always be an easy situation for him to deal with, and perhaps when the novelty and attention wear off he may get frustrated and tired. But today my son taught us all a great lesson as he chose to focus entirely on his abilities and his possibilities rather than bemoaning his disabilities.
Milestone
It happened -- I have reached the point where I have officially been married longer than I was single! I was married when I was twenty-one years and three weeks old, and today marks another "month-a-versary," as our wedding was twenty one years and one month ago.
While I was thinking about that today, I decided to set (what's left of) my mind on the point where I'll have been treatment-free longer than I was treated. My last chemotherapy infusion was about two years and two months after diagnosis, and if my math is correct that would mean I would pass this milestone in about seven or eight months if all goes well.
If I pass that one, I'm sure I'll focus next on the point where my "A.D." life exceeds my "B.C." life. That would be in a little over 35 years...
While I was thinking about that today, I decided to set (what's left of) my mind on the point where I'll have been treatment-free longer than I was treated. My last chemotherapy infusion was about two years and two months after diagnosis, and if my math is correct that would mean I would pass this milestone in about seven or eight months if all goes well.
If I pass that one, I'm sure I'll focus next on the point where my "A.D." life exceeds my "B.C." life. That would be in a little over 35 years...
Thursday, September 17, 2009
Answered Prayers/Having a Blast
I don't know how much available space remains on this blog, but it doesn't matter -- there still wouldn't be enough room to list the many ways prayers have been answered for me. There is great power in prayer, and I continue to appreciate the many prayers that have been offered on my behalf.
In my morning petitions I have sometimes felt prompted to ask for the opportunity to help someone that day. Each time I have done that, I have been put in touch with someone else who is dealing with glioblastoma or cancer of another type. I am certain (or at least certainly hopeful) that my prayers are not creating the disease, but rather creating the opportunity to consecrate this life experience to a good purpose. ("Because I have been given much, I too must give...")
I have also been contacted via comments and questions on my blog, by people who do not know how to reach me directly. Some have provided me with their contact information, and it has been a privilege to be able to contact them. I have gotten to know some really wonderful people who share this unwelcome circumstance.
I finally decided to do something more about this. I have just created an email support group for glioblastoma survivors and those who love us. It's on Yahoogroups, and it's called (fittingly) "Having a Blast." Those who are interested may subscribe (it's free) by sending an email to:
havingablast-subscribe@yahoogroups.com
It's a place where more people can share what's on their mind!
In my morning petitions I have sometimes felt prompted to ask for the opportunity to help someone that day. Each time I have done that, I have been put in touch with someone else who is dealing with glioblastoma or cancer of another type. I am certain (or at least certainly hopeful) that my prayers are not creating the disease, but rather creating the opportunity to consecrate this life experience to a good purpose. ("Because I have been given much, I too must give...")
I have also been contacted via comments and questions on my blog, by people who do not know how to reach me directly. Some have provided me with their contact information, and it has been a privilege to be able to contact them. I have gotten to know some really wonderful people who share this unwelcome circumstance.
I finally decided to do something more about this. I have just created an email support group for glioblastoma survivors and those who love us. It's on Yahoogroups, and it's called (fittingly) "Having a Blast." Those who are interested may subscribe (it's free) by sending an email to:
havingablast-subscribe@yahoogroups.com
It's a place where more people can share what's on their mind!
Got Another Date...
...and another new vocabulary word:
tympanoplasty (tim-PAN-o-plass-tee) - reconstructive surgery of the eardrum.
On November 3rd -- exactly one week after my next MRI -- the right side of my head goes under the knife again. But this time my skull remains intact. The surgeon will take grafting tissue from either the tragus (more vocabulary -- this is the little pointy part of your ear that holds earbuds in place) or somewhere else around my ear and make a new eardrum to replace the one that was damaged by radiation.
Four days later, I am scheduled to sing at a Families Supporting Adoption conference. My right ear will be completely packed with dissolvable stuff on both sides of the new eardrum, so I'm hoping the piano will be to my left. And if there is another Messiah performance this Christmas, I should have better hearing by then.
Considering how gruesome the informed consent process was for each of my cancer treatments, I think it's pretty awesome that this eardrum thing is the worst complication that I've had.
tympanoplasty (tim-PAN-o-plass-tee) - reconstructive surgery of the eardrum.
On November 3rd -- exactly one week after my next MRI -- the right side of my head goes under the knife again. But this time my skull remains intact. The surgeon will take grafting tissue from either the tragus (more vocabulary -- this is the little pointy part of your ear that holds earbuds in place) or somewhere else around my ear and make a new eardrum to replace the one that was damaged by radiation.
Four days later, I am scheduled to sing at a Families Supporting Adoption conference. My right ear will be completely packed with dissolvable stuff on both sides of the new eardrum, so I'm hoping the piano will be to my left. And if there is another Messiah performance this Christmas, I should have better hearing by then.
Considering how gruesome the informed consent process was for each of my cancer treatments, I think it's pretty awesome that this eardrum thing is the worst complication that I've had.
Saturday, September 12, 2009
...and...FORTY-FIVE!!!
(No, not 45 days since my last post...although there has still been too much space between blog entries, and lots to write about!)
Today marks forty-five months of survival, and I remembered it without Mom having to call me!
Today marks forty-five months of survival, and I remembered it without Mom having to call me!
Thursday, August 20, 2009
...and...TWENTY-ONE!
Every day brings something to celebrate! Today is our 21st wedding anniversary!
Thursday, August 13, 2009
...and...FORTY-FOUR!
(and one day!)
I was thinking about the calendar, because my husband and I celebrate our anniversary one week from today. But the fact that another 12 has passed by on the calendar escaped my notice until my mom called to congratulate me.
I actually got brave and started on a new project -- getting my office and bedroom (including the dreaded closet) cleaned up. This takes bravery for a number of reasons. First of all, those rooms are truly the most horrific to tackle. But as I've mentioned before, I think that these messy rooms are helping to keep me alive, because the idea of dying and having friends and neighbors help my husband tackle these rooms is a powerful motivator to keep breathing!
The good news is that even when these rooms are finally under control, I've still got plenty to live for!
I was thinking about the calendar, because my husband and I celebrate our anniversary one week from today. But the fact that another 12 has passed by on the calendar escaped my notice until my mom called to congratulate me.
I actually got brave and started on a new project -- getting my office and bedroom (including the dreaded closet) cleaned up. This takes bravery for a number of reasons. First of all, those rooms are truly the most horrific to tackle. But as I've mentioned before, I think that these messy rooms are helping to keep me alive, because the idea of dying and having friends and neighbors help my husband tackle these rooms is a powerful motivator to keep breathing!
The good news is that even when these rooms are finally under control, I've still got plenty to live for!
Tuesday, July 28, 2009
New greeting card needed
MRI was good! My doctor was very pleased, and so am I. The plan is to come back in another three months for another perfusion study.
It appears that everything showing up on the MRI is negative for perfusion, which means that we only see necrosis (radiation damage) in parts of my brain. This is much better than cancer taking over my brain. We'll keep doing perfusion studies with my MRI scans, so that we can continue to confirm that nothing else is growing.
As I was celebrating with the nurses, they congratulated me on my radiation damage, and then we had a good laugh about whether there was a greeting card for such an occasion. ("Congratulations -- no more tumor, just more fried brain!") We kept trying to come up with words that rhymed with "necrosis". I finally came up with the following verse (picture this on gray cardstock with little black spots all over it):
It appears that everything showing up on the MRI is negative for perfusion, which means that we only see necrosis (radiation damage) in parts of my brain. This is much better than cancer taking over my brain. We'll keep doing perfusion studies with my MRI scans, so that we can continue to confirm that nothing else is growing.
As I was celebrating with the nurses, they congratulated me on my radiation damage, and then we had a good laugh about whether there was a greeting card for such an occasion. ("Congratulations -- no more tumor, just more fried brain!") We kept trying to come up with words that rhymed with "necrosis". I finally came up with the following verse (picture this on gray cardstock with little black spots all over it):
There's one thing we know, sis',
And that is: necrosis
Is better than tumor
When it comes to prognosis.
There's no need for psychosis
(And please -- no neurosis!)
It just means grey matter cells
Do less mitosis.
It's not a thrombosis,
Stenosis, or cirrhosis.
And when you have GBM, it's
A GOOD DIAGNOSIS!
Congratulations on your MRI!
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