Fifteen Seconds of Fame

That's right -- I now have a television credit to my name!

Genentech, the maker of Avastin, has asked me if I would be willing to share my story of brain cancer survival. Of course, I said "YES!" If you are reading this blog you know that I'm hardly shy about this situation, and I am hopeful that this will give me the opportunity to give hope to others.

Last week was my first opportunity to share my story on the local news. The timing couldn't have been more perfect. Mother's Day was approaching, and being a mom to my children is my primary motivation to keep breathing. Last week was also the one-year anniversary of Avastin being approved by the FDA for use in brain tumors. And May is National Brain Tumor Awareness month --although (giggle, giggle) I was ironically unaware of this!

I had also prayed for help to get my house in order.

On Tuesday afternoon I learned that someone from our local NBC station would be coming by around 1:00 on Wednesday to conduct the interview. (Be careful what you pray for!) I sprang into action to make myself and my home "camera ready." Once again, my angel friends at church started offering to come and help. (How do these women stay on the ground?) I graciously refused, thinking I would burn more calories doing the work myself. (I also got assurance that the cameras would not go too deep into the house!)

We were ready on Wednesday. My son was even kind enough to be miserable all night with allergies, and stayed home from school so he could conveniently be here with my daughter and me for the interview. (My husband had meetings to attend, and was unable to be present.) By 12:50 I was satisfied with the way the house looked, I had fed the kids (outside) and dressed them in adorable outfits, and it finally occurred to me that I should choose my own adorable outfit to wear. I got dressed, put my lipstick on, and was just realizing that my shirt clashed with my living room colors when the doorbell rang.

Steve The Photojournalist spent over an hour in our home. He first interviewed me in the living room while the children were in the next room with a movie and promises of milkshakes if they stayed quiet. I told my story and answered many questions about dealing with the diagnosis and going through treatment. I answered questions about faith and prayer. I answered questions about the things I have been able to do since my diagnosis. (That was a long list.) It seemed like we talked forever. I even talked about the years of longing to be a mother before we adopted our children, and then receiving this cancer diagnosis, which created a new longing to remain here and be a mother to my children. And on and on we went.

Then we brought in my kiddos, and they were perfectly charming. We moved into the family room, where Emma read to us on the couch. Then Jacob read the poem that I wrote about them ("Jake the Puppy and Emma the Cat," which has been accepted for publication). Jacob and I even played a little Scrabble together. Steve also zoomed in on some family pictures and my karate black belt certificate. We ended with me and the kids singing our family fight song. It was a lot of fun! Steve The Photojournalist graciously said that he really enjoyed doing this story. I sent him on his way with a copy of my book and the URL to my blog. Genentech also provided the station with background information about Avastin. All of this went to a separate person, who wrote and "voiced" the story on the air. There was a lot of material to digest and make into a story. I wondered what angle they would take.

The segment aired on the 10:00 Thursday night news. We set the DVR so the kids could watch it in the morning. And then we waited, until finally we saw this:

http://www.nbcdfw.com/news/health/Targeted_Therapy_Adds_Years_to_Plano_Mom_s_Life_Dallas-Fort_Worth.html

Yep -- that was it! All that filming was condensed down to just a few seconds. All my blabbing was reduced to a sentence. (Even Steve The Photojournalist was expecting the final product to be longer.) But it was a good experience, and I hope that this brief moment will somehow be of use to someone.

Naturally, I saw a life analogy as I considered the whirlwind of activity leading up to the interview. Think of how busy and agitated we can make ourselves over things that won't matter in the end. Ultimately, no matter how long we get to live, we'll be surprised at how fast it's over. So hopefully when all is said and done, we'll have chosen the right things to focus our story on!

Don't Cancel When it Looks Like Rain

I have to give credit to my friend Lauralea for sparking this blogworthy thought...

As this weekend approached, our area received weather forecasts predicting severe thunderstorms. A local elementary school cancelled their spring carnival (wasting hours of volunteer effort) in anticipation of the storms. My son's baseball league kept us in suspense about Saturday's opening day games. Several friends had a day trip planned on Friday, but opted out because of the weather forecast.

For several days the sky was cloudy and threatening, but we never saw a storm. I think I briefly saw some light drizzle. That was it! We enjoyed perfect weather as we watched our son play his first game of the season.

Some friends and I were commenting about all of this when Lauralea explained to us that she learned not to cancel things just because it looks like rain. She told us about a time when the young women at our church had to travel for an activity, and the weather got really nasty. However, instead of cancelling the activity they pressed forward, enduring the torrential rains that often seemed scary. Everyone was safe, and they ended up having a very good experience together.

Her story reminded me of last summer, when my son attended scout day camp. One day the camp closed early due to severe weather, and while we all made it home safely, the drive home was indeed an adventure. Camp proceeded again on the next day, but at the first rumble of thunder they immediately shut down and sent everyone home in a panic. This time, as we drove home we heard a second rumble of thunder. And then it was over. I don't remember seeing any rain that day. This was the last day of camp, so my son missed some eagerly anticipated activities.

Meanwhile, our church youth group had planned a handcart trek activity for months, and despite severe weather on the evening before they were to leave, they still got up early in the morning and hiked toward Oklahoma. At some point during the trip the severe weather returned, but miraculously their little camp was spared while the storms raged nearby.

Practically speaking, it's always better to be safe than sorry -- especially when it comes to North Texas weather in the spring. But as always, I saw a life lesson in these experiences. Metaphorically speaking, when life gets cloudy (or even stormy) should we cancel? Of course not! This is the time to press forward and endure whatever we have to face, so that we don't miss valuable opportunities. It's not as dangerous as driving through a Texas storm. We can navigate the storms of life safely, especially as we put our trust in the Lord, who has power to calm any tempest and protect us from harm.

This also reminded me of a line from a hymn that another friend (thanks, Marnie!) shared with me long ago:

Ye fearful Saints, fresh courage take.

The clouds ye so much dread

Are big with mercy, and shall break

In blessings on your head.

"Perfectly Stable!"

My doctor didn't waste any time bringing the good news! In fact, she said I could come back "in three or four months," depending on my schedule, so I have earned my longest interval between scans!

Testing...testing...

Tomorrow is MRI day for me and the beginning of two days of TAKS testing for my son. My test is a lot easier for many reasons:

1. My test requires a nap in a tube for about an hour, followed by several hours of waiting until my doctor gets the radiologist's report. Jacob's tests go for two days, and we won't know the results for several weeks.

2. The absolute worst outcome of my test would be a heads-up that I am dying, which is something that we already know will happen to all of us. The absolute worst outcome for Jake would be repeating the third grade (which to him is a fate worse than death).

3. Thinking about my son's TAKS test will not change the outcome of my MRI. But thinking about Mom's MRI could distract Jake and affect the outcome of his test. Fortunately, his most critical test is on Wednesday, which we hope will be after we've celebrated a good result.

4. I am well-acquainted with the prayer cushion that has supported me for more than four years. It has calmed and sustained me through good news and bad news. My son may not have as many people praying for him. (However, I'll be compensating for any gap with my own prayers on his behalf!)

So his is a little harder than mine. But the good news is that we'll both deal with whatever comes from these tests. And in a hundred years, we might not even remember that we had them!

Another twelfth!

I have counted off fifty-two "twelfths" on the calendar, and hope to count off many more. Another month of survival under my belt!

Speaking of belts, our family spent Saturday in a karate tournament in Houston. It was my daughter's first year to compete, and it was the second year for the rest of us. With half my brain tied behind my back, I did one of my favorite black belt forms in the kata competition. It went over like a lead balloon (probably because that's what I looked like in my black uniform) but I was happy to be out there, alive and kicking. I didn't win, but I earned some great feedback from the judge and proved that I still had memory and balance.

The rest of my family (those who are allowed to get hit in the head) competed in sparring, and each of them won 4th place in their respective divisions. In each case they had an uphill battle, fighting against people who were older or bigger (or both). It was daunting to face an opponent who was bigger and tougher, but I was happy to see them fight through their fear. My son used the same approach again to win second place in his kata competition. He was the youngest in his group, and he later said that he made some mistakes in his performance, but he kept going as though nothing could stop him. And nothing did! It was a good lesson for any uphill battle in life.

Deja vu all over again

This wasn't the beginning of a seizure. It's one of my favorite Yogi Berra phrases.

Today I registered my daughter for kindergarten. It seems like only yesterday when I was filling out my son's kindergarten registration forms, writing the same information in response to "Are there any special things we should know about your child?" ("Please be sensitive to the fact that Mom has cancer.") Back then I wondered who would be filling out these forms for my daughter, who was an infant at the time.

Glad to discover that it would be me!

Fifty-one, two-and-six, three and almost three, and almost nine!

I never play the lottery (even though I live against the odds). I once heard a comedian say that the lottery was a "tax on people who are bad at math!"

I wasn't failing to count backwards from 100 by sevens. And I'm not having a Hurley/LOST experience.

Is this a brain teaser? (NO! Never tease what's left of your brain! Exercise it and be nice to it!)

What do these numbers mean to me today?

• Fifty-one months of survival since my craniotomy and cancer diagnosis.
• Two years and six days since I "graduated" from chemotherapy. (Will they ever call this "remission"?)
• Tomorrow will mark three years and three months since my first of many stable MRI's.
• Tomorrow my son will be nine years old. I remember when I wondered anxiously if I would be here for his fifth birthday.

In other words, these numbers mean EVERYTHING to me!

Who against hope believed in hope

I couldn't remember if I had posted this before, but I read this passage again last night and was reminded of how delicious it was:

Romans 4:18-21 (discussing Abraham and the promise that he would be the father of many nations) - "Who against hope believed in hope, that he might become the father of many nations, according to that which was spoken, 'So shall thy seed be.' And being not weak in faith, he considered not his own body...neither yet the deadness of Sara's womb...he staggered not at the promise of God through unbelief; but was strong in faith, giving glory to God; and being fully persuaded that, what he had promised, he was able also to perform."

I especially love the conceps of "against hope believed in hope" and "he considered not his own body." Abraham did not give in to discouragement in a seemingly hopeless situation, because he had his trust in God instead of in the arm of flesh. He remained faithful and obedient, and he hung on to hope.

No matter what adversity we may face, we can "against hope believe in hope" and "consider not" perceived barriers. Our perception is far too limited. As we put our trust in God's way of accomplishing His work, we will find ourselves blessed in unexpected ways.

Jim was right!

As the eldest sibling in my family, I always wanted to be the one that was right. Cancer changed that.

I remember my first Messiah solo audition shortly after neurosurgery and the beginning of chemotherapy. I knew that, statistically speaking, it looked like my last chance to sing my favorite oratorio, and so I was anxious for the opportunity to land a solo.

At that time my brother Jim scoffed and predicted that four years later, people would see me coming in and say, "Here comes Sister Oakes again, saying this may be her last Messiah!"

I knew that miracles were possible, and I smiled at his optimism. But I also knew that the odds weren't in my favor.

That's why I'm glad the odds aren't in charge. GOD is in charge. And for whatever reason He has seen fit to leave me here with the ability to do many things.

Today Jim's prediction became reality. I have done other Messiah performances since then, mostly at other venues, but this morning was the "four years later" solo audition. The director is a cancer survivor, too, now, so we both rejoiced in the miracles that allowed us both to be here, celebrating the Messiah through music.

This year the program is short, and there is only one aria in the performance. It's my favorite one: "O Thou That Tellest Good Tidings to Zion." There was a room full of women waiting to audition. I don't know if I will land the part, and I won't know for a few more weeks. But coming in for the audition and proving my brother right was a delicious experience!

GOLDEN!

In Texas, we don't often get a foot of snow in one night -- but we did! Another ordinary miracle that closed offices and schools and let us enjoy the day together. Jacob and Emma made a snowman and a snow fort, and after warming up with hot chocolate, engaged in a neighborhood-wide snowball fight. A day to treasure!


Today I am "golden!" FIFTY months of survival since my cancer diagnosis. GBM survivors don't always get to say that -- but I did! Another ordinary miracle that makes days like today even more delicious. This evening my husband and daughter are attending a daddy-daughter Valentine's party/fundraiser, and my son has asked me out on a dinner date to my favorite Italian restaurant. Tomorrow is a Sadie Hawkins dance at church, and I asked my husband to go with me. He said yes -- it's like our first date all over again! Life is good!


As my husband surveyed the splendor of our winter wonderland this morning, he noticed one stubborn, golden leaf dangling from the white-crusted oak tree in our front yard. Considering the Texas weather that has raged about since all the leaves turned golden last fall, this is one leaf that is determined to hang around.





It reminded me of one of my favorite O. Henry stories: "The Last Leaf," which is a tale of Christian charity and the power of the determination to hang in there:

http://http//www.enotes.com/best-o-henry-text/the-last-leaf

I think I should frame this photograph and envision myself as that little golden leaf, hanging on with complete disregard for what might work against me. Of course, in my vision, I'll keep three other "Oakes" hanging there with me!

Ask and ye shall receive

Matthew 7:7-11:

"Ask, and it shall be given you; seek, and ye shall fine; knock, and it shall be opened unto you:

"For every one that asketh receiveth, and he that seeketh findeth; and to him that knocketh it shall be opened.

"Or what man is there of you, whom if his son ask bread, will he give him a stone? Or if he ask a fish, will he give him a serpent?

"If ye then, being evil, know how to give good gifts unto your children, how much more shall your Father which is in heaven give good things to them that ask him?"

I was pondering this passage today, knowing that some feel disappointed when they don't receive what they asked for. Some question God's love for them (or even His existence) because a prayer seemed to go unanswered. But I happen to know that all prayers are heard, recorded, and answered. I know that every one who asks will indeed receive.

As I pondered the idea of giving good gifts to my children, the remaining fragments of my mind recalled that we were almost out of bread. It's a common situation, because my daughter loves to make her own sandwiches for breakfast and lunch, and she also raids the bread box for snacks. If Emma came to me one evening and asked me for some bread after consuming half a loaf earlier in the day, I certainly would not give her a stone. But I probably wouldn't give her bread, either. I know that there are better things to give her in this situation. Maybe some string cheese. Maybe a piece of fruit. Maybe I'll surprise her with something she's never tried before, and it will become her favorite snack. Maybe it's almost dinnertime, and she should wait a little while so she can enjoy a good meal.

Somehow, some way, she is going to receive something good. She may not necessarily receive the same thing that she asked for, but it won't mean that I don't exist or that I don't love her. What she receives will be on my terms, as a parent who loves her and knows how to provide the best for her.

If I, being evil (or at least mortal and imperfect), know how to give good things to my children, how much more does my perfect Heavenly Father know how to give good things to His children when they ask Him! It may not be exactly what we asked for, which is completely understandable when we realize the limitations of our mortal perspective. What we receive might first require patience. But we will receive good things in response to our petitions. And it will be on His terms, as a parent who loves us and knows (far better than we do) how to provide the best for us.

Rock Solid Stable!

That was how the radiologist assessed my condition!

It was a long wait before we knew for certain, because the perfusion report took longer than expected. But I had my prayer cushion supporting me, and all was well!

Tomorrow, tomorrow, I love ya, tomorrow...

It's MRI day
Tomorrow
Bet your bottom dollar
That tomorrow
Will be fun!

Just thinkin' about
Tomorrow
Hope the stuff that once caused
So much sorrow
Will be done!

When they see my display
Of grey
Brain matter,
Hope they lift up their chin,
And grin,
And saaaaaaaay...
(ohhhhhhhh...)

"You'll have many more
'tomorrows'!"
(Still, don't put off life
Until tomorrow --
SEIZE THE DAY!!!)

Tomorrow, tomorrow,
I love ya, tomorrow!
And thank God
For those who pray!!!!

So now what do I call this?

...and...FORTY-NINE?

...and...4-1? 4.083?

...and...HIGH-FIVE: THE FIRST MONTH?

Whatever it's called, it's another month of survival under my belt, and something to be grateful for!

Being There

I was there today for another milestone: my daughter's first talk in Primary at church! Four years ago Emma was still an infant, and I wasn't even allowed to lift her out of her crib because I was recovering from neurosurgery. At that time, milestones like this seemed like a long shot -- but still something to hope for.

With no stage fright and only a little help, Emma walked up to the little microphone in front of the other Primary children and read her talk:

"We believe in God. I am a child of God. God is the Father of my spirit. We are all part of God's family.

"We believe in Jesus Christ. Jesus Christ is the Son of God. Jesus Christ is our Savior. He saves us from death and sin.

"Heavenly Father and Jesus Christ love me. They love you, too. We should love each other. We are all children of God.

"In the name of Jesus Christ, amen."

(Amen!)

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.

...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.

What's your favorite post?

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

Hallelujah!

There will be a half-brained, half-deaf alto soloist in the cast!

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.

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!

...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.

"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!

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!

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.)

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!

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..."

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.

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.

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!)

...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.)

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...

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.

...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!

...and...TWENTY-ONE!

Every day brings something to celebrate! Today is our 21st wedding anniversary!

...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!

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!

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...

...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!)

Free Markets Find Cures

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

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...

...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!

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!

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.

...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

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.

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!"

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.

...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.

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!

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.

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."

...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...

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).

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!

...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!!

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.

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!