Friday, December 25, 2009

Messiah 2009

http://www.youtube.com/watch?v=7rHV1iYtCFs


http://www.youtube.com/watch?v=5khZ5C9T2Bk

Let Earth Receive Her King

Merry Christmas!

Yesterday it snowed, and as soon as the kids noticed the flurries outside our window they went running through the house, yelling, "It's a miracle! A miracle!!" I immediately thought of the song from the movie Charlotte's Web ("...just another ordinary miracle today...") and was flooded with thoughts of the many miracles that have surrounded us, both big and small.

On Sunday I "Handel-ed" Messiah again, and loved it. (I hope the audience loved it, too.) Last month my right ear underwent surgery. For the past four years my right brain has been under assault. But they still let me sing, and no one threw tomatoes at me. Earlier that day I led the choir and sang in a quartet in church. Today our family went to a nursing home to visit and sing with the residents there. Any venue is a joy.

Speaking of joy, we met a resident named Joy today. When we approached the nursing station and asked who needed a visitor, her name came up first. She was lying in her bed, looking very sad and alone. She didn't speak often, and when she did it was hard to hear. She said that it hadn't been a very good day for her, and she just wanted to lie still and be quiet. When we suggested a song, she consented. And then she brightened as we started with "Joy to the World." By the time we finished our visit she had opened up to us, and it was a precious moment. We saw others, and soon we had a following as residents would wheel along and join with us as we visited rooms.

No one at the nursing home was expecting us to come, but they all received us very kindly and graciously. And we received them as our new friends. Together we blessed each other. As we left, my son was especially happy, knowing that something good had happened. We all felt it. I kept thinking of the words we sang: "let earth receive her King!"

He is given to us as the greatest gift of love, and there are many ways we can receive Him. We can receive his healing, whether physical, emotional, or spiritual. We can receive His word and live according to it. We can receive His promises and trust in them. We can receive His spirit and discover peace. We can receive His goodness and share it with others by doing good works. We can receive all things with gratitude and see our blessings multiply.

This year has been a happy one as we celebrate Christmas. In years past we have had less happy circumstances. No matter what, however, there is always room to receive our King.

Saturday, December 12, 2009

...and...FOUR!

I've just completed my fourth year of survival. (HIGH FIVE!)

The fifth year has just begun. (Hi, Five!)

This is like a mini-jubilee (one-tenth of a jubilee, to be exact). I've been thinking about what I want to do in this year.

Another Messiah performance is an easy pick. That's coming up on the 20th, and hopefully again on Easter Sunday. During auditions for the 2006 Easter concert, my brother Jim predicted that four years later people would see me coming to the audition and say, "Here comes Sister Oakes again, saying this may be her last year for Messiah." At the time I appreciated his confidence, but I thought it was pretty ambitious. However, here we are. In fact, after my last MRI, Jim called me and pretended to be from the Messiah Soloist Auditions Fraud Department, investigating allegations of a person faking a brain tumor to get some stage time.

Another book would also be nice. I just received a contract from a publisher for Jake the Puppy and Emma the Cat, based on a poem that I wrote when my daughter was a baby. In the spirit of the jubilee, maybe I need to free my other half-finished manuscripts from bondage. And maybe the stuff in my closets, too.

Being here for my daughter's fifth birthday next summer is very high on the list. Family vacations, reunions with the "gaggle" and other fun ideas have surfaced as candidates for this year of celebration.

As always, the passage of a milestone reminds me that I have received the gift of life, and like anything I receive, I want to use it faithfully and gratefully for something good. Above all, I pray that I will use this new year to help make manifest the mercies of God.

Wednesday, December 09, 2009

What's your favorite post?

This blog is more than four years old now. I am curious...does anyone have a favorite post?

Tuesday, December 08, 2009

Thursday, November 26, 2009

Happy Thanksgiving and Happy Blog Birthday!

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.

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!

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.

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!

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.)

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!

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..."

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.

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.

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!)

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.)

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.

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...

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!

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.

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!

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!

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):

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!

Monday, July 27, 2009

Life moves fast, except on MRI day



Someone in this picture turned four last month. That's my daughter, Emma. People always think she's older, because she's so tall.

Someone in this picture had just turned 42 that day. That's me -- the Mama. People always think I'm younger, because my kids are so young.

Someone in this picture will be 65 later this year. That's my mom -- the Nana. People always think she's my sister.

Someone in this picture turns 90 this week. That's my grandma -- the Nonagenarian. (There's a neuro test spelling word.) Grandma suffered a stroke last fall, and doesn't really remember who we are. Even so, she still seems younger than her years, and we had a fun time together at her birthday party.

The Emma, the Mama, the Nana, and the Nonagenarian: four generations of people who grew up really fast. It seems like only yesterday when I was four, Mom was in her twenties, Grandma was ten years older than I am now, and Emma wasn't due to arrive for thirty-four more years.

Time flies when you're having fun, and life moves fast, even when you don't anymore.

Not surprisingly, my three-month hiatus from the world of neuro-oncology went by faster than I'd like. It's picture day again tomorrow. I go in for another MRI perfusion study, followed by a three-hour wait before seeing my doctor for the verdict. I'm always very grateful for the cushion of prayers supporting me, because that three-hour span seems to be one of the few times when life slows down for a very long rest. (If I only knew how to make it more fun...)

I got an appointment reminder call from someone who sounded like she expects neuro-oncology patients to have the capability of a four-year-old. Or maybe she doesn't encounter enough long-term patients who can still remember the routine.

"You're supposed to have an MRI before you come in for your appointment. Did someone call you to confirm the MRI time? Did they call you from the Northpark facility? Did they tell you to be there at 10:45?"

"Be sure to bring your MRI films with you when you come in for your appointment."

"Please bring all of your medications in their bottles so we can confirm everything that you are taking. Put them in a plastic zipper bag so they don't get lost." (This one was new -- I used to be trustworthy to remember the two prescriptions that I have been taking for more than three years.)

"Please come fifteen minutes early because we will need you to draw a clock and answer some questions on a form when you arrive. Your appointment is at 3:15, so that means we want you to be here at 3:00."

In case the MRI results are confusing again, I'm armed with tie-breaking evidence of good neuro functioning over the past three months: copies of my black belt certificate, my recent Scrabble scoresheets, and a recently published article that I wrote; my "extra credit" shoes for the walk-a-straight-line-on-your-heels test; and the ability to spell n-o-n-a-g-e-n-a-r-i-a-n. I'm hoping that the verdict will be good and easier to reach than last time, but I know that it is what it is: either something to celebrate or something to start tackling as early as we can.

...starting the drumroll...I'll post again tomorrow with the news...stay tuned...

Saturday, July 25, 2009

...and...FORTY-TWO!

Yes, I just celebrated forty-three months of survival, and no, I'm not going backwards. Today I get to celebrate forty-two YEARS of a very good life!

Turning 42 isn't impossible for someone who was diagnosed with GBM at age 38. (With God, nothing is impossible.) It's just not often expected, so it's something extra to be happy about.

I get to celebrate the day with lots of family, including my grandmother, who will be ninety years old next week. (I hope to follow in her footsteps!)

Monday, July 20, 2009

Free Markets Find Cures

Half-brained cancer lady speaks her mind about public healthcare at about minute 2:20:

Friday, July 17, 2009

KRISTA is the new black!



I had half a mind to do it, and so I did it -- I earned my black belt in karate! Proof positive that I am alive AND kicking!


On a sad note, I learned a while ago that I would earn a black belt by hook or by crook when a boy in my son's karate class died in a drowning accident. Our sensei came to his funeral early and presented his parents with a black belt. It was a thoughtful gesture, as this child had been such a karate enthusiast, but I was haunted by the realization that I could very well be the recipient of a similar kindness.


Fortunately -- and thanks again to the many prayers that continue on my behalf -- I survived long enough to earn my belt the traditional way. The culmination of my efforts over the past couple of years took place in a three-hour test. In the middle of July in Texas. In full black uniform. In a room filled with other students. Part of the test was held outside. It wasn't cool -- but it was awesome!


It's the ultimate neuro test. Master Richard Black has outdone all of my doctors in challenging my mental and physical capabilities. In order to reach this level I needed to recall all of the material that I had ever learned. Memory, reflexes, balance, motor skills, and neuromuscular strength were definitely confirmed as functional.


I had my husband with me to (literally) lean on for support. He was there, earning his brown belt at the same time. As we like to say, "The family that kicks together, sticks together!"


It's all up from here. I'm "only" a first-degree black belt, so the journey can continue as long as I want it to. I hope life's journey can be that way, too.


I already have another big test scheduled later this month. This one won't be in the dojo, but the MRI tube, followed by less grueling neuro tests (walking a straight line, counting backward, tapping and rolling my fingers, drawing a clock, etc.) I'll be sure to bring Dr. Fink a copy of my black belt certificate for inclusion in my chart.


Meanwhile, the Simple Minds song is going through (what's left of) my simple mind:




What you gonna do when things go wrong?


What you gonna do when it all cracks up?


What you gonna do when the love burns down?


What you gonna do when the flames go up?


Who is gonna come and turn the tide?


What's it gonna take to make a dream survive?


Who's got the touch to calm the storm inside?


Who's gonna save you?


Alive and kicking


Stay until your love is alive and kicking...

Sunday, July 12, 2009

...and...FORTY-THREE!

Marking another month of survival, although each day is a moment to celebrate life.
This month's report:
  • I am here.
  • I survived long enough to throw Emma's movie star party and attend my class reunion.
  • I went on a reassuring bike ride yesterday.
  • I have been invited to test for my next belt rank this coming Friday.
  • I can still count backward from 100 by seven's, and I'm better at playing chess.
  • I had another article published in Desert Saints Magazine: http://www.desertsaintsmagazine.com/magazine_articles/Jul2009/DSM%20July%202009.pdf (it's the one on page 12)
  • My office and my bedroom closet are still messy enough to keep me alive.
We were also recently on the front page of the neighborhood section of our local paper. It had nothing to do with cancer survival -- just the fact that we were obviously an adorable-looking family arriving at our local 4th of July tea party!

Saturday, June 27, 2009

The Movie Star Party

Like my class reunion, it was a sore spot for a while. Something I looked forward to, but didn't know for sure if I'd be able to do it. So of course it was nice to do it!

"It" was The Movie Star Party. I saw this idea in a magazine long ago, when I was looking for ideas for my son's first birthday. Back then I thought it was such a cute idea, and I looked forward to hopefully someday having a daughter and throwing this party.

Six months after my daughter was born I had my head cut open and received a grim prognosis. This went on the "wish I may, wish I might" list, with the hope that I might be here when she was old enough for this kind of a party.

Today we did it!

Guests were invited to the premiere of Emma -- Age Four. We met them at the curb, where they donned boas, tiaras, top hats, and sunglasses before heading up the red carpet to our front door. My mom was Nana Barrett, interviewing these young celebrities. My dad was the Grandpa-parazzi and my husband and son were the press photographers.

Inside, the guests autographed a large gold star and pressed their hands into air-dryable clay before heading upstairs for a screening of some Wallace and Gromit short films (complete with hot dogs, popcorn, and candy).

They came back downstairs for the awards ceremony. We opened with a reading of Jamie Lee Curtis' book, When I Was Little: A Four-Year-Old's Memoir of Her Youth. Emma opened her presents and then each child received an "Emma" award. (Emma won hers for Best Actress in a Birthday Drama.)

We had two cakes: one had Emma's name in a star, and the other was frosted and topped with a sugar cookie handprint.

We sent the child celebrities home with a gift bag, complete with cell phone-shaped bottles of bubbles.


It was super-fun! I (literally) live for this kind of stuff!

Tuesday, June 23, 2009

Reunion

There wasn't a better title for this post, as my recent past has been filled with reunions.

We started with a trip to the Austin area, to help my son meet some requirements for his Texas badge by visiting the Texas State Capitol. While there, we made a side trip to meet with "Aunt Barbi," who plays a special role in our family history.



We returned home briefly before flying to Utah for our 25-year high school reunion. The event was held at our school, which had undergone many changes. It was symbolic, as we had all gone through many changes since graduation. And as always, I was just so happy to note that I had made it to another milestone event. It was a really great evening, and I even got in some gaggle therapy.



One of our gaggle -- a fellow cancer survivor and co-founder of the Longflicks -- wasn't able to make it to the class reunion, but I was able to meet up with her later. We continue to share a love of music, the loss of hearing in our right ears, many good laughs, and a determination to hang around and raise our kids. She's especially lucky, because no matter what she faces, she is always able to at least have half a smile going at all times.



There were other reunions that were just as joyful. On our first day in Utah we were invited to meet with Ardeth Kapp, who is a dear friend and mentor as well as my favorite author. She made us lunch and spoiled our kids rotten and let me pick her brain about writing, and made us feel like part of her family.



My husband and I also went to the temple, hoping for a reunion with some of our online 2ofus4now friends in the area. That reunion fell flat, but we were able to go on and reunite some of my ancestor family members by participating in temple sealings.

During our trip we stayed with my husband's parents, and had the pleasure of not only spending time with them but also my husband's sisters and their families. Our last evening in Utah was spent at my aunt's house, where several members of my extended family gathered for an impromptu reunion.

After many days of fun and friends and family we arrived home and found our beagle Chip eager for a reunion with us. There's nothing more wonderful than knowing you're loved in so many places...including back home.

Sunday, June 14, 2009

...and forty-TWO!

...plus two days!

I didn't forget. In fact, on the evening of the 11th I thought about posting early, but didn't. And then on the 12th I was thinking about two people who had birthdays that day, before getting swept up in the joys of cub scout camp.

I woke up this morning, remembering that it was Flag Day, and that's when it occurred to me that I hadn't blogged in a while.

But here I am, not only with another month under my belt, but another half-year under my belt! Three-and-a-half years of survival, with hopefully more to go.

Still trying to do more than just maintain a pulse. Still working toward my black belt. Still busy with work and family and church callings and all the daily stuff that I can't take for granted anymore.

I still have a huge scar on my head, which makes me grateful for long hair that covers it. I still make my husband laugh with my "Mrs. Short-term Memory" skits -- except they aren't really skits. And now I have a new reminder of this experience. My right eardrum is no longer retracted; it has eroded from radiation damage to the point of being perforated.

The plan is to watch it for a while, to see if it will heal spontaneously (although that isn't expected), and to guard against infection. If there is no improvement in six months or so, I get to look forward to another surgery -- this time to make me a new eardrum out of the fascia of my outer ear. (Only God can make a real eardrum, but this one will do.) Meanwhile, I mostly hear white static (and sometimes an effervescent bubbling sound) in my right ear, and sometimes it's not comfortable. But I have the benefit of context -- after all, it would be silly to sit here long past my projected expiration date, complaining about only having ONE good ear.

Gotta get that Cat Stevens "Moon Shadow" song out of my head! There's no "if I ever lose my ear.." lyrics, so (what's left of) my mind of course had to make some, and there's not much to work with here...

And if I ever lose my ear,
And when you say things, I can't hear;
Yes, if I ever lose my ear,
Oh, weeeeee -
I won't sit to your left no more

Sunday, June 07, 2009

Paying it Forward

My brother Jim has saved the lives of each of his siblings. He saved one brother from drowning and another one from choking, and later as a dermatology resident he saved my life. When the ER doctor said it was just one of those things that would go away on its own, Jim was insisting that I was having "textbook seizures" and he wouldn't leave me alone until I had EEG and MRI tests, which is how my brain tumor was discovered.

There's no way to pay something like that back, and I'm not sure I could pay it forward, either. However, I came close the other day. My youngest brother Blake called and told me about a stomach injury he sustained the night before, and he complained of a continuing abdominal pain. He wanted to know what I thought it was. I thought it was a good reason to go to the emergency room, and I finally convinced him to go. A few hours later he was in surgery to remove his appendix, which was in the early stage of appendicitis. They also had to deal with a hematoma that was close to the appendix. Together, those factors could have been devastating if he had not sought proper care.

This is not to boast, or to even suggest that I have anywhere near the medical expertise of my brother Jim. As I saw the parallel in these experiences it became yet another example to me of how much the Lord knows and cares about each of his children, and how he provides what we need. Sometimes he does it in the form of a nagging little brother, and sometimes he does it in the form of a nagging older sister. And sometimes he does it by putting other people in our paths, who are also our brothers and sisters as children of the same God. And so we never know when it will be our turn to pay it forward and unknowingly help someone with a word or a deed.

Saturday, June 06, 2009

You Bet Your Life

I'm not the only one who counts survival time in months!

I read a news story about a British man who bet against the prognosis he was given when he was diagnosed with mesothelioma. In 2006 he was told that he would only live a few months (this is sounding familiar) and he responded by placing 100 pounds in a 50:1 bet that he would live until the middle of the following year. He made 5,000 pounds and renewed the bet that he would live until this past June 1. He did, and now he has put down another bet (100:1) that he will survive another year.

The man explained that physicians told him the longest known mesothelioma survival was 25 months. "I reached 26 months a year ago and on June 1 this year I will have reached 38 months," he said.

I guess I could have made some money this way, except for the fact that I'm not a gambler -- unless you count having insurance. (I heard a comedian say once that insurance was legalized gambling: "I'll bet you $1000/year that you won't wreck your car." "I'll bet you $1000/year that I WILL!" And then if you get in a wreck they say, "Double or nothing, you won't do it again!")

So the question in (what's left of) my mind is whether this man's bet helped keep him alive longer than expected. It's not a huge sum of money, but you never know what motivates people to hang in there. My motivation is my family, of course -- and the fear of people going through my incredibly messy closet.

One news report was headlined, "Positive Attitude Does Little to Boost Cancer Survival Odds, Study Says." However, the actual study conclusion was merely that emotional status was not independently prognostic (because - duh - other factors can weigh more heavily in predicting outcome). But the suggestion in the headline was flawed. Having a positive outlook certainly can't hurt, and surely it helps people take better care of themselves.

It's not hard to find the story of someone who has beaten the odds against a disease, and it's also not hard to find the story of someone who died much sooner than expected. (Another news story was about a man who died one hour after being diagnosed with cancer.) I think ultimately it boils down to what a patient once said to their doctor after being told they wouldn't live much longer: "It's not your call!"

Sunday, May 31, 2009

Clearing the air

We've been miserable with allergies lately. My son's seasonal allergies led to a nasty sinus infection, which kept him home from school and benched him from some of his favorite activities for a while.

'Tis the season for allergies, but I remember the weather forecast describing higher than usual pollution levels this weekend, mostly due to the number of recent hot, dry days.

And then I remembered another comment from several weeks earlier, when some heavy storms came through. The meteorologist seemed to welcome the approaching storms, mentioning that they would be coming through and cleaning up the air.

I naturally considered the storms of life, and the opportunities they provide to clear away the polluting elements that seem to thrive in times of ease. I also realized that storms are often feared for their damaging potential. But unlike the weather -- which we cannot control -- we can control whether the metaphoric storms of life will damage us or purify us. I think they key to that control is knowing where to find refuge from these storms.

"For thou hast been a strength to the poor, a strength to the needy in his distress, a refuge from the storm, a shadow from the heat, when the blast of the terrible ones is as a storm against the wall...He will swallow up death in victory; and the Lord God will wipe away tears from off all faces; and the rebuke of his people shall he take away from off all the earth: for the Lord hath spoken it." Isaiah 25:4,8

Faith drives out fear, just like fear drives out faith. Faith, which is rooted in hope, anticipates the positive in any circumstance. Fear, which results from the absence of faith, anticipates the worst in any circumstance. Fear clouds our perspective, while faith keeps us anchored during the storms of life so that our vision becomes increasingly clear.

Tuesday, May 12, 2009

...and FORTY-ONE!

I even remembered it before anyone reminded me!

Forty-one months of survival. This is fun, because I'm still forty-one years old for a couple more months. I'm looking forward to watching my survival-month tally climb past my age in years.

It's also delightful to realize that if you switch the numbers around you get 14, which was a hopeful prognosis (in months) at the time I was diagnosed. Back then, if someone would have predicted that I would not only survive fourteen months, but would also be doing fine at forty-one months, I would have merely smiled in appreciation at their hopeful thinking.

The other cool thing is that my "graduation day" from chemotherapy was a little over fourteen months ago. So not only did I zing by fourteen months past diagnosis all the way to forty-one months past diagnosis, but I have survived fourteen months after stopping all treatments.

Good times like these breed sick humor. I was joking with some family members about ways to have some fun with my neuro tests. Things like making a face instead of sticking out my tongue. Responding to "What day is it?" with a deliberate nod and a confident answer..."Blue." We remembered Bill Murray faking Tourette Syndrome in What About Bob, explaining that "If you can fake it, you don't have it." As offensive as that probably was to people who know firsthand about Tourette Syndrome, we couldn't resist considering the concept. If I have the ability to fake a bad neuro test...maybe it means I'm still okay...

...or at least a little healthier than my sense of humor...

Maybe I'll be done with sick humor when I'm celebrating fourteen YEARS of post-treatment survival.

Tuesday, April 28, 2009

I'm not really supposed to ride rollercoasters anymore

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!

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...




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."

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...

Saturday, March 28, 2009

I cried myself to sleep last night

I cried myself to sleep last night --
And not because of sorrow,
But of joy --
For my boy
Would be baptized on the morrow.


There was a time when being here today seemed like a long shot. Even last night I felt like King Stefan in Sleeping Beauty, like we should still be burning spinning wheels or something.

But the day came, and I was able to watch my son be baptized and confirmed at the hand of my husband. I was even able to sing a solo during the program, despite being half-brained and half-deaf.

We were surrounded by family members--including my parents and parents-in-law, and all of my brothers and their families--and I didn't have to be lying in a box to bring them here!

It was a moment made possible by the grace of a loving God (and sponsored in part by Kleenex).







Wednesday, March 18, 2009

Gr-EIGHT Stuff

Waiting for the birthday boy to wake up for the family breakfast party:



Jacob the gr-EIGHT!



The Aztec pyramid cake. Just take four yellow cake mixes and bake them in various sizes of square pans, then stack and top them with tons of homemade chocolate frosting, some cookies and Red Vines, candy letters, and a doughnut hole "boulder" chasing a Lego Indiana Jones figure.



Our hero, Indiana Jake:



I couldn't resist making monkey brain jello to go along with the pizza, snake eyes (red and green grapes), spider sacs (olives), beetle wings (potato chips), fried caterpillars (Cheetos), licorice whips, and 7-Up (because he's eight, so SEVEN is UP!):



Some of our birthday crusaders after finding their name in hieroglyphics, playing a geography game, doing the blindfolded snake pit walk, playing "snake hot potato", targeting plastic bugs with blow darts (bendable straws and Q-tips), making crayon rubbing art, eating lots of gross-sounding food, and finding a treasure chest filled with candy and prizes. (And bestowing lots of nice presents on Indiana Jake.)



It was fun -- I had half a mind to do this, and so I did!

Friday, March 13, 2009

...and...EIGHT!

I was so excited about today, that I forgot to do an "...and...Thirty-NINE" post. Yesterday marks thirty-nine months of survival. But more importantly, today marks my son's eighth birthday, and I am HERE!

When I was diagnosed, Jake was not yet five years old. I wondered if I'd live long enough for him to remember me. Surviving to his eighth birthday seemed like a long shot. But most miracles seem that way.

Not only am I here, but I am well enough to pull off another birthday party. We had a family breakfast party this morning and will continue the festivities after school. And tomorrow we will have sixteen children in the house for "Indiana Jake and the Gr-EIGHT Birthday Crusade". We have foam fedora hats and "blow darts" (aka straws and Q-tips) and rubber snakes and a treasure chest and more strewn in our living room, waiting to be organized for tomorrow's event. A Mayan pyramid cake and some monkey brain Jello molds are waiting to be created in the kitchen.

It's Friday the 13th, and I've never felt luckier!!

Friday, March 06, 2009

You know you have cancer when...

...you think going deaf would be a blessing.

I went to the ENT today. I thought I had ruptured my right eardrum a couple of weeks ago, and have had both pain and hearing loss, so I finally went to get things checked out.

The doctor extracted even more crystallized wax and dead skin from my ear canal, which are the continuing effects of radiation from three years ago. (I had a similar experience with this last year.) The good news was that my eardrum appeared to be intact. However, the doctor noticed that my eardrum has a large retraction pocket, which is the result of continuing radiation damage to the eustacian tube.

Testing verified that my nerves are okay, but my eardrum is not functioning properly, and I have significant hearing loss in my right ear as a result.

My favorite part of the visit was when the doctor explained that the full effects of radiation damage will take several years to manifest, and he suggested a course of monitoring over the next four or five years. He explained some possible interventions to relieve discomfort, but nothing that would restore my hearing or prevent further deterioration in the long term. (Long term! I like thinking long term!)

In other words, I'm not completely deaf (yet) in my right ear. But if I'm lucky to live long enough, I may become so.

Only cancer can make a musician actually look forward to the day when she loses her ear.

Tuesday, March 03, 2009

Kind of fun

Whenever I go to my karate lesson I notice the inspirational quote that my sensei puts on the wall.

This week's was definitely blog-worthy. It's a quote from Walt Disney:

"It's kind of fun to do the impossible."

Sometimes the "impossible" is just something that isn't expected. Sometimes it merely requires some extra imagination, effort, or a willingness to step outside of our comfort zone, combined perhaps with a little luck. Sometimes the "impossible" just takes a little faith.

Surviving glioblastoma for more than three years is hardly impossible. Statistics (which are not fun) suggested it would be a long shot. But I'm not the only one who has been able to do it. And I can look back on moments of imagination, effort, and stepping outside my comfort zone. I can look back on moments where my faith was tested and strengthened.

Cancer isn't fun. But over the past three years there have been moments of celebration each time a milestone is reached. Moments of gratitude at the dawning of each new day. Moments when the routine became cherished. Moments when relationships became more dear and love was expressed more frequently. Moments when I finally dusted off old goals (like writing a book and working toward a black belt) and put some action toward them. Moments when I could find a reason to laugh and make the terrible more bearable.

If life were Disney World, I doubt I would have picked the ride that I'm on. But since I'm on it, I'm grateful that this ride has moments that are kind of fun!

Tuesday, February 24, 2009

And the beat goes on

(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!

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.

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.

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!)

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.

Friday, January 23, 2009

Brown Belt Girl


from left: Sensei Eric, Sensei Orren (my first instructor), ME, Master Black (sans uniform -- he changed before I asked for a photo), and Sensei Doug (my current instructor)


I keep hearing the Van Morrison song in my head. ("Brown Eyed Girl") I have a brown eyed girl -- my daughter. I have a brown eyed son, too. And now I have a brown belt.

Three years ago I had no idea that today I would be a third-degree brown belt in karate. Three years ago I was early in the fight for my life. I was recovering from neurosurgery and taking daily chemotherapy and going in for radiation treatments five days a week. I was also preparing for the worst and hoping for the best in a grim situation.

During this evening's belt test Master Black talked about preparing for the worst and hoping for the best. He said and quoted so many blog-worthy things, I wished I could have had a pen and paper with me. And his wisdom came from experience, because he is a real survivor.

One of my favorites was "I do not fear today, because I have seen yesterday."

He also taught us about perseverence. About listening and being aware of our surroundings. About not panicking. He taught us to believe and to visualize what we want to achieve. He put us through a grueling yet inspiring three hour test. I kept thinking that my body was hating the experience, but "I" wasn't my body. "I" was savoring every minute of the experience, so grateful for what I was capable of doing.

I tearfully accepted my brown belt and the congratulations of Master Black and my instructors past and present. I kept marveling, because this was not expected of me three years ago.

It wasn't expected. But it was possible. And I believed it enough to give it my best shot.

Wednesday, January 14, 2009

Blessons

As some of you know, Blogger uses a word verification process for those who wish to post comments, to keep spam machines out.

A friend of mine looked at the comment page, and noticed the verification word was "BLESSONS". It's a nonsense word, of course, but my friend called it to my attention and noted the fitting blend of the words "blessings" and "lessons". This friend is also a cancer survivor, and she is quick to recognize the "blessons" of adversity.

Let that be a blesson to anyone riding the rollercoaster of life!

Come What May, and Love It

If you like the title, you'll love the rest of it. I can't take credit for it, and I couldn't add anything but "amen" to it, but I'll share it with you:

Come What May, And Love It

Tuesday, January 13, 2009

The drumroll continues...

I knew something was up today when my doctor came in and went right into the neuro test without telling me how my MRI looked. (Usually she starts off with the good news.)

Today's MRI showed a couple of areas that warrant further review. It could be nothing, or it could be slight growth. Some views look identical to the previous scan, and some look subtly different. We decided to look again in six weeks, this time with perfusion. So the drumroll continues.

My doctor said that even if this is something, it is small. If needed, the probable course of action would be to start some more Avastin infusions at less frequent intervals than before. And probably more frequent monitoring. She really tried to be as reassuring as possible.

Despite this uncomfortable news I still felt calm and supported by much prayer and faith. There were a few tears as I called family and friends who were waiting to hear how things went. But I felt a sense that I am still in good and loving hands, and that all is well, no matter how this plays out. And I think this is a reminder not to get too complacent. I've had good MRI scans for two years now, and while that has been a great blessing, I'm sure this latest twist in the story will reveal itself to be a great blessing, too.

Monday, January 12, 2009

...and...THIRTY-SEVEN!

My mom called today and noted that when children turn three, parents usually stop counting their ages in months. She wanted to know if I was still going to count my survival birthdays in months. It was her way of reminding me that today is the twelfth, which means that I have completed another month of survival!

I'm celebrating in the morning with a trip through the MRI tube after a nice three-month hiatus. The drum roll has already started, and will continue until about noon tomorrow. But I'll be keeping my nerves steady like I normally do -- by floating on the faith and prayers of so many. (Thank you!!)

Meanwhile, to answer Mom's question: Yes, I will still keep track of my survival birthdays in monthly increments, and I hope it continues long enough to become really ridiculous. We still notice the days when our children get a month older. My husband and I have been married for more than twenty years, and we still celebrate our "month-a-versary" on the 20th of each month. We always try to see who is faster at calculating how many months we've been married. (Even though it got tougher after our 13th anniversary, because Schoolhouse Rock only taught us our multiplication tables through the twelves.)

I value my family and my life. I'm happy to celebrate both as frequently and as long as I can!

Sunday, January 11, 2009

Catching Up

Finally adding some video from the Messiah concert:

O Thou That Tellest Good Tidings to Zion:


He Shall Feed His Flock:



Throwing down the gauntlet with Jared (the video picks up in the middle of the song):

My New Year's Resolution

People ask me if I have a new year's resolution.

It's the same one I had last year and the year before: LIVE.

And if I can lose 30 pounds and finally get my house organized and finish writing my second book and earn my black belt and pay off our mortgage and see my son get baptized and confirmed and help my daughter learn to read, that would be cool, too.