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!

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!

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.

...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.

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!)

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.

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.

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

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.

...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!

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.

It's all good

Pictures and video will have to come later, but I should mention that everything has been wonderful!

Messiah was another dream come true -- twice, actually, because we had two back-to-back performances that evening in order to accommodate the audience. The cherry on top of my joy was watching my children in the audience, singing along to some of the songs.

Christmas Eve brought my brothers and dad and families together for dinner at my house, followed by a children's Christmas pageant and a gift exchange. It was so good to have the chance to establish new traditions with so many loved ones close by. Having my youngest brother there was especially nice -- we're all hoping that he enjoyed it enough to consider joining the rest of us here on a permanent basis.

One of the gifts my dad gave me was a framed snapshot of a sunset scene, taken on his cell phone while driving down the highway on December 14, 2005. He had seen me earlier that day at the hospital, as I was preparing to be released. We knew since my surgery on the 12th that I had cancer, but I had not yet gotten the final pathology results when he had to leave. The photo was taken shortly after I called him with the awful pathology news: grade four glioblastoma with a lousy prognosis. The sun was setting, and he stopped and took a snapshot just to capture what he saw at that memorable time. And then as he gave me the framed picture he pointed out the sunset, which was quite red, and he reminded me of the old adage: "red skies at night, sailor's delight". That hopeful symbolism was a tender mercy at such a dreadful moment.

This Christmas morning was my fourth Christmas since that fateful day. Getting one more Christmas with my family was what I wanted most, and on top of that I received many generous gifts from family and friends. My children were angels, squealing with delight at every package bearing their name, and even helping dig out and straighten up after all the unwrapping was over.

In the afternoon we went to a local nursing home for our traditional caroling and Christmas cheer with family and friends. We had a big group this time, and we met some charming and grateful residents who were eager to talk to us. We returned home for wassail and cookies, and then had the missionaries come to our house for dinner.

As I finished the day I noted in my journal that all of the events of the holiday were reminders of good things -- life, love, faith, tender mercies, and miracles -- things that surround us every day.

The next day we hit the road to see my mom. We also saw my aunt and uncle, who were visiting from Chicago, and we visited my grandmother in a nearby nursing home.

My grandmother is twice widowed and descends from a long line of healthy women. At age eighty-nine she had only been to the hospital to give birth, visit relatives, and heal from injuries sustained during a fall. But a few months ago she had a rapid decline in health, and although she is now living closer to us, the version of her that we always knew seems to be moving farther away. Long gone is the original Scrabble master who was virtually unbeatable. I recognize many neurological changes as I visit with her, and I have a greater appreciation for what my own neuro tests are looking for. But it's still good to have more chances to see her and express our love and enjoy what remains to enjoy.

Everything surrounding this season is good. It's good because Christmas is about the One who can heal and bless any situation and make it good.

Warming Up

Temperatures warmed up just briefly enough this weekend to trigger another round of seasonal allergies. Yet somehow my husband and I managed to make it (sniffles and all) through our rehearsal with the Messiah orchestra.

We threw down the gauntlet again, rehearsing "O Death, Where is Thy Sting?" and those notes always take us back to the first time we sang that together, just a few months after my surgery and diagnosis. (So does the video, courtesy of my brother Blake):



It was so exciting to realize how long ago that was.

I then got to run through "O Thou, That Tellest Good Tidings to Zion," which is such a cheery song for me. Like most of the oratorio, it is very dance-like, and it's a fitting celebration (in many ways) of survival.

(More video from the 2006 performance):



We moved to the next one, and I giggled as I rehearsed the recitative, "Then Shall the Eyes of the Blind Be Opened," because the last words are, "and the tongue of the dumb shall sing." It's funny to me, because I (the dumb?) immediately follow that by singing my next aria.

And then my giggling stopped as I sang the words, which remind me of the Lord's care for us: "He shall feed his flock like a shepherd, and he shall gather the lambs with his arm. And carry them in his bosom, and gently lead those that are with young."
Like any mother with cancer, my biggest concern has been less about myself and more about the children who must deal with it. As someone "with young," it is a comforting realization to know that I am not the only one who knows their needs and cares for them.

As I left the rehearsal I had a smile on my face and a tear in my eye, feeling full of gratitude for yet another chance to do something that has come to mean so much to me. I remember that first "A.D." Messiah performance, when I thought it might be my last. I remember my brother joking back then that four years later people would be rolling their eyes, saying, "Here she comes, thinking it's her 'last Messiah' again." Back then I thought the idea was so far-fetched. But here I am -- three years later and looking forward to my fifth performance this Sunday.

Hallelujah! Glory to God!

Probably the least inspirational blog entry

Yeah, this one is just a shameless correction of a shameless plug I posted earlier. My book signing this Saturday is now from 2:00-4:00 at Moon's Bookstore. I'm not Glenn Beck, so I doubt there will be people lined up in anticipation, and I doubt that I'll need people in purple "Team Oakes" jerseys to manage crowd control.

But there's always hope!

Happy New Year

A.D. (After Diagnosis) Three is officially over today. I was wide awake, as eager as a child on Christmas Eve, as I watched the clock display 12:00 midnight, ushering in the twelfth day of the twelfth month of the year. Welcome A.D. FOUR!

Three years ago on December 12 I awakened from neurosurgery to hear the word, "malignant." I would later hear "glioblastoma" and receive somber explanations that a grade IV tumor had a prognosis of less than a year to maybe fourteen months, with my age and tumor location being favorable conditions. At that time, three-year survival was considered "long-term survival" -- a category for only a tiny percentage of patients. But I think that percentage is growing, especially among Dr. Fink's patients. I've met others who have survived longer.

I thought I should say, "Let the celebration begin!"

But we were celebrating last night. Jared and I stood in line with the kids for hours at a Wal-Mart in Irving, waiting to meet Glenn Beck on his book signing tour.


When he finally arrived, we had a brief book swap moment, as he signed our copies of The Christmas Sweater, and I handed him a signed copy of Fertile in Our Faith. Jared snapped a picture just as Glenn (that's him in the hat) was tapping the cover and saying, "I think I actually have a copy of this -- but thank you!" (He's an adoptive parent, too.) I think he was just being a gracious recipient, pretending to recognize the book, but I did try to send him a copy last year. So maybe now he has two. And I got to feel like a Make-a-Wish kid again.



We'll also celebrate tonight with a big party at our house. Actually, it's an Elders' Quorum Christmas Party hosted at our house, but hey -- it's still a party! And it's celebrating the birth of the One who has gotten me through the past three years.

And really -- although this is a milestone that I have had my eye on for a long time, every day of the past three years has been a day to celebrate. Waking up from neurosurgery three years ago was something to celebrate. And even though I carried devastating news with me, going home from the hospital two days later was something to celebrate. Surviving treatment and tumor progression and more treatment was something to celebrate. Graduating from treatment earlier this year was something to celebrate. Preparing for my fifth Messiah performance next week is something to celebrate. Working toward my brown belt is something to celebrate. Attending every baseball game, school recital, science fair, and birthday party has been something to celebrate. And I could go on and on.

Let the celebration CONTINUE!

Thankful

I didn't forget Thanksgiving Day. It was very much on (what's left of) my mind as I enjoyed a wonderful weekend with my family at my mom's house.

We celebrated my mom's birthday and the 26th anniversary of my first date with Jared. These dates are appropriately aligned with Thanksgiving Day.

We visited my grandmother, who has lived 89 years very independently and in great health, but who has recently become dependent on 24-hour assistance. As we visted with her I couldn't tell if she really recognized us or was just being polite, like someone at a party who can't recall the familiar face who greets them. And as someone who has become quite familiar with neurological tests, I couldn't help but notice things that made me appreciate the easy daily functioning that is so quickly taken for granted.

Mom and I played many games of Scrabble, and I won most of them, until one game when I got all of the "I" and "O" vowels and not much else. I tried to think of Corrie Ten Boom (the author of The Hiding Place) as she would have tried to come up with a reason to be grateful for those vowels. All I could come up with was that I wouldn't be able to spell my name without them.

Mom and I also enjoyed the thrill of the hunt during Black Friday. We pulled into the first store at 4am when it opened, and emerged victorious with a small list of items just in time to make the opening of the next store. A few more stores later, and a quick breakfast at I-HOP, and we were home when the others awoke. I was grateful for the opportunity for adventure.

During our adventure we visited a bookstore that used to carry my book, and when we didn't see it on the shelf we inquired and were told by the store employees that it was out of print and no longer available for ordering! I became very thankful for a quick-responding publisher, who assured me that my book was most definitely in print and prominently displayed in their latest catalog, and that sometimes booksellers will say anything to avoid the embarrassment of being sold out when the author comes in. And I became extra grateful for our local bookseller, who always keeps my book in stock, and who is ordering more copies for my upcoming signing event. (Which, by the way, ***shameless plug alert*** will be on December 20 from 12-2pm at Moon's Bookstore in Dallas, and will feature other authors and artists, too!)

We went to church with Mom on Sunday, and saw familiar faces from our days long ago when we lived in the area. Together we expressed our gratitude for the Savior, whose life and mission become more meaningful to me all the time. And then we drove home slowly (but safely) with thousands of other drivers, to find that all was well and ready for a new week with jobs and school and responsibilities to keep us busy. Much to be grateful for.

That weekend alone represented so many countless blessings. There are more yet to be acknowledged, and there are many more yet to be discovered. But we know from whence these blessings come, and that knowledge gives us cause to be thankful and hopeful in any circumstance.

With the Thanksgiving weekend behind us as a happy memory, our thoughts quickly turned to the celebration of Christmas. We have become a blur, finishing year-end projects and decking our halls. It occurred to me that I hadn't updated my blog in a long time, and I hope that I haven't lost readers with so many gaps between posts. But all of this bustle is an exhausting but wonderful reminder of what I am still capable of doing, and it reminds me that the day for giving thanks is never really over, no matter what the calendar says.

E.R. Anniversary

Okay, so I can't always remember where I put the car keys, and even though it's the one I call the most, I rarely remember my husband's cell phone number (probably because I just push "Jared" on the speed-dial). But mention November 16, and I remember vividly what happened on that date three years ago.

After my third seizure that day my husband took me to the emergency room. I had a fourth seizure on the way there. We didn't know what was happening, but we knew it needed medical attention.

The ER doctor insisted that I wasn't having seizures, and after the C-T scan was negative he sent me home with the reassurance that this was just one of those weird things that will just go away, and we'll laugh about it six months later.

Neither he nor I had any idea that glioblastoma cells were busy at work, and without intervention they would have consumed my brain within six months. The doctor even said, "It's not like you have a brain tumor..."

Thanks to a perceptive dermatology resident who wasn't afraid to nag his sister over the phone ("You're having textbook seizures! Get an EEG!"), and a handy neurologist who prays a lot, we got to the right answer a few days later.

I've told this story many times before. I should explain that I hold no ill will against the ER doctor, who was probably sincere in his confidence that he was right. I'm grateful that circumstances compensated for his error so that my life could continue. I'm grateful to understand that this experience is safely in the Lord's hands.

Three years ago November 16 was preceded by a Saturday at Six Flags, and it was the last time I rode a rollercoaster. My husband's company has a private party there each November, and we go every year. We were there again this weekend with all of my family. Once again I passed up the rides that I used to love (there's this thing about avoiding g-forces when you have a hole in your brain) but it was a joyful experience, because it was another survival milestone and an opportunity to spend time with loved ones.

We left the park and headed to our church Saturday evening for another exciting experience. Since I'm not dead yet, and since I still had the capacity for it, I was asked (and able) to write and direct a roadshow for our youth group. The roadshow performances were held that evening, and it was great! I wrote ours based on "Jake the Puppy and Emma the Cat" -- a poem that I wrote as a love story for my children. We made it into a musical, and we were lucky to have a great selection of talented and enthusiastic teenagers to form our cast. And my kids loved seeing "their" poem being dramatized on stage. I was just happy to be there, savoring a day of family, friends, fun, and all that good stuff that makes life so wonderful.

The next day we heard many inspiring talks during our sacrament meeting at church. The concluding speaker told his stories of survival, and the continuing challenges facing his family. Among these are the fact that his wife is a brain tumor survivor, and his youngest daughter undergoes neurosurgery this Wednesday. In the midst of this was his message, which is not to "handcuff the Lord". We should put our faith into our righteous desires, with a willingness accept the Lord's will concerning the outcome. I understood very clearly what he meant, having learned for myself the peace that comes from knowing that the Lord is always trustworthy. I was once again reminded of the great blessings that have been accruing for the past three years.

I personally don't think it was any coincidence that he was assigned to speak to us on November 16 this year, just as I don't think it was coincidental that my brother could diagnose a seizure over the phone three years ago, and that the right neurologist could take a walk-in appointment. This whole experience has been surrounded by tender mercies, so it's not surprising to discover more.

I have a date for Messiah 2008!

Sunday, December 21
(2 evening performances, each about an hour long)
Artisan Center Theater
418 E. Pipeline Road, Hurst, TX

Free to the public, but reservations are needed (call 817-284-1200).

Audience sings along for the choral numbers.

I get to do my favorite alto arias, and Jared and I get to throw down the gauntlet again and sing the duet, "O Death, Where Is Thy Sting?"

This will be my fifth Messiah performance over the past three years! Each time I get to do this, it's a reminder of the miracles of both life and quality of life, and the One who makes all things possible.

...and THIRTY-FIVE!

The twelfth has rolled around again. I've survived another month, for a total of thirty-five since the day I heard "malignant".


I did my own neuro test today, just for grins:

• I know where I am (I'm right here!) and what day it is.
• I can draw a clock and a cube (actually gained that ability since the craniotomy).
• I can count backwards from 100 by 7's (ditto).
• I can close my eyes and stretch out my arms and touch my nose with each pinky and forefinger.
• I can walk a straight line on my toes and heels.
• I can tap my fingers and thumbs together and roll my hands over each other in rhythm.
• If I run my finger along the outer edge of my foot, my toes curl under like they should. (Did you just try that one?)
• I can close my eyes and trace a letter or number on either palm and feel what it is.
• I can spell WORLD backwards (without writing it first).
• I have coordination, balance, and neuromuscular strength (just ask my sensei about karate class this week).
• I can still do stuff (like my own neuro test) "just for grins".
• I can still remember Scarlett O'Hara's opening lines in the movie Gone With the Wind ("Fiddle-dee-dee! War, war, war --this war talk is spoiling all the fun at every party this spring. I get so bored, I could scream! Besides, there isn't going to be any war.")
• I can still recognize and match musical pitches--which is really important, because another Messiah performance is coming up!!!
• Although I do it less frequently than I should, I can still write a complete sentence or two.

I'm working, I'm teaching Relief Society and directing the choir at church, I'm enjoying my husband and my kids, I'm serving on the PTA board, and I'm working toward my brown belt. If someone pulls a knife or a club on me, you should feel really sorry for them.


The only signs of brain damage are my really messy bedroom and my tendency to lose car keys and shoes when I'm in a hurry to get somewhere.


But most importantly, I'm alive!

I was there

During our many childless years, my husband and I worked with primary-age children at church, and as we watched them grow and give talks and sing we'd wish for the day when we had a child of our own doing those things.

When I was diagnosed with cancer I felt that longing again -- not for the child (because we had our children), but for the opportunity to be there and enjoy all the wonderful moments a child experiences as they grow up.

Last month my son gave a talk in primary at church. It wasn't his first talk, but it was a special one. He helped a lot with the preparation, and even did his own illustrations to show the audience while he spoke. In my completely unbiased opinion as his mother, I thought it was very charming. And although it was a small moment, it meant the world to me to be there.

Now you get to be there, too -- sort of. I finally loaded the video onto YouTube:




Tomorrow is Veteran's Day, and he has a small speaking part in his school program. It's another brief moment, but I'm really looking forward to being there.



(...and I was!)

Despite the election, I still want to live

I try not to get too political here, but I will admit that I'm still proudly displaying my McCain/Palin yard sign and bumper sticker. They didn't win, and the potential consequences are sobering, but I don't regret my choice. And if I can survive brain cancer for three years, surely I can survive four years of blue domination. (Those in power may end up destroying the world's best healthcare system, but I also rely heavily on prayer to stay alive.)

This morning I awoke to read the following article, which was both brilliant and timely (in my humble and completely objective opinion as the author) as well as a good reminder of stuff I've preached before:

http://desertsaintsmagazine.com/2008/11/01/in-everything-give-thanks/

Mirror Mirror

After being benched for a while, I was able to return to the dojo this week to get caught up on my karate material. It was awesome -- I have learned all the material for my first brown belt. So it's just a matter of p-a-t-i-e-n-t-l-y waiting and working until I have mastered it enough to be invited to test. And after three levels of brown belt, the next rank is the coveted black belt.

At this point I am now starting to learn some things in mirror image, which is a really neat stretch for a left-brained person who has to switch gears and start using more of (what's left of) my right brain. In fact, one of the requirements for black belt is to not only have mastered all of the material, but also to be able to execute everything against a right-handed or left-handed opponent. So I will ultimately be re-learning everything in mirror image. Talk about giving the brain some exercise! I think it's great -- I try to envision the healthy glial cells in my right brain getting stronger and taking down any bad cells that try to wake up and spread.

I am re-living another moment in a (sort of) mirror image, too. The link below was recently posted online, so I get to re-live my recent Families Supporting Adoption (FSA) conference address (from early August). Except this time I'm watching my address from the audience perspective instead of standing nervously behind the microphone.

The first two speakers on this broadcast are well-known and wonderful, and I had the intimidating job of following them and trying not to suffer too much by comparison. I gave my remarks at about minute 56 1/2 of this broadcast and drew much of my material from my "Sunday Sermon" blog post from June.

http://stream.lds.org/LDSFS/FSA_2008_08_01_FamiliesSupportAdoption__eng_.wmv

This is the other part of me that keeps me strong against anything that threatens to destroy.

I can turn off Jurassic Park now

With two good reports under my belt, I braced for a third moment of suspense. An initial biopsy showed a precancerous endometrium, so I underwent minor surgery last week for a more comprehensive look and testing.

The slow boat pathology report was finally given to me today. It was negative, which was good news once again. Since it conflicts with the initial biopsy, I just have more monitoring to look forward to. But as my doctor was telling me not to worry, I reminded him that I've had worse. Being put on another "live and look" plan isn't that big of a deal.

The holidays are fast approaching. It's nice to think that perhaps I can enjoy the rest of the year taking a break from being a professional patient!

Negative News

Remember -- cancer turns your life upside-down, so words like "progress" and "positive" can mean bad things, and "negative" can mean a good thing.

Today I got negative news, which was a very good thing. My needle biopsy was "completely benign."

So I only have one raptor in the kitchen, and it's been asleep for over two years, despite all my shouting for joy.

As my friend said, "Praise God, from whom all blessings flow..."

SUPER!

The first thing Dr. Fink said about my brain MRI today was that it was "SUPER-imposable" on the previous scans. Still holding stable eight months after my last treatment, and two years after my last evidence of tumor progression.

This is SUPER news! I go another three months before my next scan.

I left Dr. Fink's office and headed for my next adventure, where I donned my SUPERwoman cape and submitted to a needle biopsy. I am now tightly wrapped in a huge Ace bandage, feeling like Scarlett O'Hara or an Elizabethan princess -- both in my inability to take a deep breath, and also in my need to be waited on hand and foot, since I am restricted from most activities for the next 24 hours. (Had to reschedule tonight's karate class.) I should get a call in the next day or two with the results.

But, hey -- it was still a SUPER day!

...and...THIRTY-FOUR!

Yesterday was my husband's birthday, and we celebrated all weekend, including today at our traditional Sunday dinner with all of our in-town family.

I also realized that today marks thirty-four months of survival. I'm two months away from "long-term survivor" status. It's been two years since tumor progression interrupted my first year of treatment, and if all goes well with this Tuesday's MRI, I'll have been stable ever since. It's a miracle.

Actually, no -- that's not right. It's not a miracle, as in just an isolated event. The past thirty-four months have been steady string of many daily miracles, thanks to many kind friends and loved ones who have been vigilant in prayer on my behalf, and thanks to a loving Heavenly Father who hears and answers those prayers.

The saga continues...

I promise that I'm not doing this for ratings, but this latest adventure is to be continued.

I went in for my "recall" mammogram today, and the results of that led to an ultrasound study, and the results of that led to a referral for a needle biopsy sometime next week. The radiologist tried to be reassuring, and I hope she's right. She thinks it's a benign situation, but wants to be sure.

My next challenge is to schedule the needle biopsy sometime between Tuesday's brain MRI and Wednesday's jury duty summons. It'll be an interesting week. I'm very grateful for the many prayers that have been carrying me through this twist in my story.

And speaking of prayers, my aunt's PET scan concluded that her cancer has not spread, so we are enjoying a big celebration on her behalf, and using yet another opportunity to express our love to family and friends.

No steroids this time

Last night I gave my daughter a pep talk about getting enough sleep. Em is a night owl and an early riser and a nap avoider.

We don't share DNA, but she has nonetheless managed to carry the family insomniac torch into another generation. I got it from my mom, who got it from her mom, who probably got it from her mom. Great-Grandma Mabel's parents immigrated to Chicago from Sweden, so my theory is that we sometimes go to bed late at night in the central US time zone and wake up early in the morning in the central European time zone.

Since my daughter is three-going-on-sixteen I decided to appeal to her vanity by educating her about the merits of beauty sleep yesterday evening. It worked. She went to bed on time with no appeals for more water/snacks/stories/hugs, and as of 4:30 am she is still asleep, thank goodness.

I, on the other hand, didn't follow my own counsel. I stayed up reading until 11:30 and was wide awake four hours later. After trying to fight it for a while, I decided to remind my body that if it won't sleep, it has to get out of bed and work. I made the long commute from my bedroom to my adjoining office and sat down at the computer to do some writing.

It's reminiscent of my early A.D. days, when I was on post-op steroids and doing this on a daily basis -- except back then I managed to write several magazine articles and a book. This time I'm not on steroids -- just too much on (what's left of) my mind. So I'm not as productive, and all I can churn out right now is a brief blog post.

The funny part will be reading this later in the day to see how many silly typos I made while BUI (Blogging Under Insomnia).

The Other Raptor

The movie Jurassic Park was so scary. I remember when it first came out, and my husband and I stood in line at the movie theater with lots of parents and their small children, as though this were some kind of Barney event. As the movie progressed, there was a parade of these same parents, dragging their terrified children out of the theater. We scratched our heads and shrugged, as we were childless at the time and feeling rather smug in our ability to armchair-quarterback parenthood.

There's this one scene that has come to (what's left of) my mind lately. It's the one where the kids are trapped in the kitchen with a fierce and clever raptor who is hunting them, and they are playing this highly suspenseful cat-and-mouse game. It got to the point where I could barely stand it any longer, when another raptor came in the room. At that point, I thought this was over -- how could these kids possibly survive two raptors?

But they did.

I was telling this story to my Aunt Pat, who is having a PET scan done today to further examine some spots on her liver and lung, which may be nothing -- or which may be her cancer spreading. (She is a colorectal cancer survivor.) We'll know the results tomorrow, and hopefully she doesn't have any more raptors entering her kitchen. But even if she does, the game isn't over. It becomes another battle, and it's better to face the raptor head-on instead of having it take over without warning.

In an eerie coincidence, I got a letter in the mail today, informing me that my recent mammogram warrants further examination. I go in tomorrow, and hopefully I won't have any more raptors entering my kitchen. (I know that many recalled cases end up being nothing.) But I thought it was interesting to have talked to my aunt about the possibility of taking on another raptor and surviving. Maybe it was a way of preparing myself for the possibility.

Or maybe tomorrow will just bring us both a big sigh of relief.

(OR maybe this is how I will finally get book #2 finished...)

"Normal People" Stuff

It was actually kind of fun this week, being well enough in my head to be worrying about "normal people stuff."

Like my knee. It's still not happy with me after last week's karate classes and belt test. I had more x-rays and an MRI on Tuesday, and I get to visit the orthopedic surgeon tomorrow for my verdict and sentencing. Meanwhile, I keep trying various combinations of rest, ice packs, InterX, brace, Advil, and -- when push comes to shove --crutches. And each wince of pain is a reminder that -- hey -- how many GBM survivors get to complain about knee strain from trying out scissor kicks nearly three years after diagnosis?

(By the way, it was really funny having my knee go in the MRI tube instead of my head!)

I also had my first mammogram on Tuesday, now that my "normal people" doctor is satisfied that I am not dead and therefore I am subject to routine screenings. They had to pull my chart out of the archive warehouse.

(By the way -- did you know that when you get a mammogram you get to wear a really cool cape? I think if more women knew that, they'd quit procrastinating. And now I think I have my Halloween costume figured out.)

It was just really cool to spend most of the day in doctor's offices and radiology centers, knowing that for the first time in nearly three years, none of this had anything to do with what usually has me in doctor's offices and radiology centers.